It has been a while since I have last written, I was locked out of my account due to having no idea what my password was! I did however feel it was important to write about our next chapter since so many of you have been so supportive and loving to our family...so here it goes.
As many of you know Julia now lives with her grandmother and grandfather (Gramma and Papa). She is doing well as expected. Julia's new school is amazing so far! They have patiently listened to so many of Julia's professionals, to myself, to Su, and have come up with such creative ideas to help Julia's transition! I can not wait to see her class room next week! Julia loves living with her grandparents, playing with Riggs, seeing her family and having some much needed one on one time. I have cherished being able to email, skype, call, and visit with Julia without having her reactive behavior wedge in between our time together. Ella and Caleb love being able to email and visit with Julia and feel safe and secure and genuinely enjoying their time with her. The peace in our home has been clearly evident. These are all positive parts of this transition.
Unfortunately, not every part is positive. With everyone involved, some of our smiles are true, some are just masking tears. Making the decision to transition Julia out of our home too every last bit of courage Ben and I had. I have learned it is not something you can understand until you live through it. Our reasons behind it were not an easy reality. Countless meetings, phones calls, emails between everyone involved took such an emotional toll on us daily. Without going into details, our options of what to do were bleak, long term residency was the first option. For those who don't know what this is, it is a residential place for children who have proved to be a danger to themselves or others to the point of serious concern. These options are not put out there to children with typical behavioral issues, or because parents are not doing the right thing, and not before every other avenue has been tried. Don't get me wrong there are some amazing residential programs out there, and after getting being a part of a community of parents with similar lifestyles, I think there are instances when they are needed. That being said, It was not what was best for my Julia. Su had called me during this time and once again offered to take on Julia. They have offered in the past, but we said no thank you. Jim and Su have been a constant part of our lives for the past 4 years, and the past 7 for Julia. Which is good considering the conversation between Su and myself was more of me just sobbing into the phone that saying anything coherent!
Two days later we were sitting in an office at Julia's CBAT placement. Su, Myself, her clinician, and Elaine (Julia's therapist for the past 4 years, on the phone). We went over details of the severity of the situation, how we could best make this work for Julia and all the paperwork it would require. Then we brought in Jules. I had promised Julia we would come up with a plan on how to keep her safe and that we would still be her family. Julia was excited to see gramma had come to the meeting. We went over the idea with Julia, she loved the idea! She asked questions, she listened, and looked at us with those deep brown eyes...then she was quiet. (For those of you who know Julia REALLY well, quiet is not a common trait she has, so it is taken with seriousness). She looked sad, so I asked her if she wanted a hug, she said yes...she came over, climbed up on my lap and cried, I cried along with her. That feeling of guilt that I had failed her has not lessened a month later, I don't expect it will anytime soon. As we sat there, I promised her I wasn't going anywhere, I was still mom, dad was still dad, she had a brother and sister that loved her very much. I explained we loved her enough to do the hardest thing ever, to live somewhere else because it is what was best for her. I told her I don't expect her to believe me, that it would take time for her to see we were still just there for her for each step of her life. She said goodbye to us and went back to her classroom.
As I drove home the 5 hours it took me to get back, I sat in silence thinking over the past 4 1/2 years. Where we had started, where we had gone, and how far we had come. I spent a good amount of time crying, which didn't help the visibility with the white out conditions I was already driving in. I came across so many memories of triumph and failure, so many times I didn't think the 5 of us were going to make it, and other times I was sure we could have conquered the world that day. The high and lows were incredible, but all I kept coming back to what....what did I do wrong, what could I have done differently, how could I have done more. In the weeks that followed the answers were not any more comforting.
Christmas came and went, due to an unforeseen illness I spent Christmas and New Year's in sober thought and reflection on everything that was going on, everything that went on, and everything that was going to happen. Needless to say emotionally I was a wreck. Everyday brought new revelations, new sadness, new regret. Ella and Caleb in their own way showed me how much of their lives I missed trying to help Jules. I had spent 95% of my time on Julia's appointments, keeping her safe, advocating for her etc....which left 5% of my time for Ella, Caleb, Ben, Myself...and anyone one else still wanted me around. Next was packing up all of her things to bring to New Hampshire. I will just say that is a pain I am not sure I could endure again.
There are still parts of Julia all around the house, which I am slowly finding and packing up. The best I can relate it to is having a parent in your home that you then put into a nursing home. It isn't the end of the world, just the end of the world that you know. Not one day has passed that I don't tear up, that I don't feel like I failed her. I hate that she feels abandon by us, that we couldn't help her find peace, that her "issues" were too big for us. That reality is a dark place to live.
Where does that leave us? With hope. I was raised to believe no matter how dark something can appear, it makes the first flood of light all the more brilliant. I can not change all the mistakes I made, I can't give Ella, Caleb, and Ben back the time I should have over the past 4 years, I can't regain the sanity I surrendered. I have realized however I have only failed them if I give up. Julia's teacher told me Julia mentions her mom, and siblings all the time. In court Jim referred to Ella and Caleb as Julia's siblings. Although there are those out there that don't see it... we are family, Julia sees it, those who love her and know what is best see it...and for that I know we did not fail her. We gave her the family she needs, and will continue to need for the rest of her life. We did what we set out to do. There will always be things I could have done differently, but I didn't. I did what what I thought was best based on all the information I had, and based on my love for my children and my husband. I am a human, an imperfect human...or rather a perfect human, because I think perhaps a perfect human is one that falters and triumphs, accomplishes and fails....but never raises their bar of expectations on themselves beyond what they can achieve.
Through this hope we will build our next chapter. We have many changes coming up, ones we are in the middle of, ones we can't see yet, ones that are going to test us, and ones that are going to be beyond anything we deserve. As we go through this chapter, as we have the past few...we do it with our family of 5 in mind. We do it with the scaffolding of support and love that has gotten us this far, with our faith, our love, and our strength as a unit.
Many of you have asked how you can help. Pray for all of us, all those in Julia's life. Not one of those people has an easy job. Love us all for what we can offer, and realize that we are all doing what is best. Understand that during this transition there will be bumps in the road, and there will be huge strides forward. Laugh with us, cry with us, love with us, and know that from the bottom of our hearts we can not thank you all enough for carrying us through this life we have been blessed to have.
Monday, January 27, 2014
Wednesday, April 10, 2013
what on earth is going on?!
Many of you are asking how we are doing. First let me say that we appreciate all the prayers and support! They mean so much to myself, Ben, and the kids. We are so grateful to have such amazing friends and family behind us.
So how are we doing? Well, I guess that depends on your view of life. We are doing ok.
As many of you know, Julia has been at the Italian Home for almost two weeks. This is the same place she was last December. As I am sure many of you have done before, calling 911 for a child is a terrifying ordeal. When you have to call a crisis team in to evaluate a child in your home because they have become so unsafe that you need back up the emotions bounce from being terrified to being completely heart broken. To have your fears confirmed, and your child sits on your lap and calmly explain to professionals what is going on is a feeling that is incomparable to anything else I have encountered in my parenting career.
Everyday has been riddled with phone calls, meetings, visits, paperwork answering questions and trying desperately to blend into life when we can. Three children are very affected by all of this. My three children. Julia has been playing, going on field trips, she made a birdhouse, watching movies, dancing, doing therapy sessions, and talking through some pain. Ella and Caleb have been going to school, playing, relaxing, and having some peace in their home.
One of the hardest things during this time is the clear change in how peaceful and easy everything gets when it comes to functioning through the day. There is no screaming, little tension, no refusal to do things...no missing out on things because Julia can't handle it. I don't say this to be mean. I say this because we realize it, it is part of our life, and inside it is just as hard knowing how easy it is. It is heart breaking to see the difference. What some people do not realize, is that we are not alone. There are so many families out there like us. Julia has an adorable 7 year old room mate right now. Her family is getting a break. I have no doubt that each child in the ITC has a family at home struggling with the same realization, that day to day life is a breeze when you aren't living in constant turmoil.
Next comes what they have seen/found while Jules has been staying. That is where it gets tricky. I have been an open book about everything involving our family for years. I don't want anyone to think we hide anything, or are not proud of who we are. But my children are my world, and I will protect them above all else. No one wants their life plastered on a billboard, or the internet, or part of the daily hen house of moms chirping as they compare notes on what they know of someone. The same is true for my kids. They have a hard enough road. After much thought, I have decided that what is going on really doesn't need a public address. Those who need to know what is going on, are those who are part of the immediate care of my family of 5, yes, we all need care :). But other than that our world is going to become a little more private.
So as my last address to Julia's state, what they have found is horribly saddening, involves a lot of intense work, and most of our fears have come true. It means that we are a family with a big job ahead of us. We have three children who need to navigate this world in a way best for them, and for society. We have a plan, which involves big changes, small changes, a little fear but a lot of hope and faith.
As many of you are aware, we have put our house up for sale. Some of you know details, some of you know a few things, many of you are totally blown away by this. Please know we have been given an amazing opportunity to become an even stronger family of 5 than we ever could have imagined. Selling our house isn't easy, right now with showings and home inspections it is one more hump to get over.
So what can you do? We have been asked this a lot. Number one is keep those prayers going! Without faith we would have thrown in the towel a while ago. What Ella and Caleb need most is to be allowed to be kids. They have missed a great deal or the carefree life that comes with being a kid, part of the new plan is getting them to a place where they can do this. They don't want to talk about life, they don't want to learn something new, they just want to play, get muddy and laugh. If you want to help with Ella and Caleb, get ready to be a kid! For Jules, know that we were on the right track, and that reality is very hard. When you do see her, there is a very good chance she may not be comfortable talking. If she is just standing there, that's ok, if she wants to talk she will:). You don't have to try to engage her, she is happy just to be near people but not feel pressured to give an answer. She has a lot going on right now. The safest thing for Jules, is to learn to be Jules... and I am going to leave it at that. For me... OH MAN, there are so may things! After much thought and consideration I have realized what the hardest thing for me is.... not justifying my world. A good chunk of why I am so forthcoming with personal info is because in my heart I believed "if they could just see what we see, understand what is actually going on, THEN they would stop making it worse, or not believing." What I have realized is, that is doesn't matter. What I need to do is what is best for her, and what is best for her is for her world to be private and for her mother not to lose her mind soap boxing all the time... so here is it "don't ask me how things are going, or what's new, or how the kids are" Because you and I both know I will tell you! Ask me how Caleb's game went, did Julia draw anything lately, How is Ella's karate coming along... but for the love of God don't ask me how things are going! :) What about Ben? oh that poor poor man. Pray that he survives us all :P He needs a happy home to come home too. He needs to be able to go out with his friends and know that there isn't a ticking bomb at home because of it. Help the kids and I and you will be helping Ben.
Lastly, we are moving. Yes, yes we are. I realize there is a for sale sign in front of the house. I deal with elephants in the room all the time, but I would prefer not to go into detail on this one. All you need to know is that we are leaving our house, as a family of 5 (with a few extra helpers) and we are going to take some time to be a family. Honestly, there is a lot up in the air. We are all very excited for this new adventure and we love the support we are getting from all of you. That being said... for the next chapter, you are just going to have to wait to read the book :)
So how are we doing? Well, I guess that depends on your view of life. We are doing ok.
As many of you know, Julia has been at the Italian Home for almost two weeks. This is the same place she was last December. As I am sure many of you have done before, calling 911 for a child is a terrifying ordeal. When you have to call a crisis team in to evaluate a child in your home because they have become so unsafe that you need back up the emotions bounce from being terrified to being completely heart broken. To have your fears confirmed, and your child sits on your lap and calmly explain to professionals what is going on is a feeling that is incomparable to anything else I have encountered in my parenting career.
Everyday has been riddled with phone calls, meetings, visits, paperwork answering questions and trying desperately to blend into life when we can. Three children are very affected by all of this. My three children. Julia has been playing, going on field trips, she made a birdhouse, watching movies, dancing, doing therapy sessions, and talking through some pain. Ella and Caleb have been going to school, playing, relaxing, and having some peace in their home.
One of the hardest things during this time is the clear change in how peaceful and easy everything gets when it comes to functioning through the day. There is no screaming, little tension, no refusal to do things...no missing out on things because Julia can't handle it. I don't say this to be mean. I say this because we realize it, it is part of our life, and inside it is just as hard knowing how easy it is. It is heart breaking to see the difference. What some people do not realize, is that we are not alone. There are so many families out there like us. Julia has an adorable 7 year old room mate right now. Her family is getting a break. I have no doubt that each child in the ITC has a family at home struggling with the same realization, that day to day life is a breeze when you aren't living in constant turmoil.
Next comes what they have seen/found while Jules has been staying. That is where it gets tricky. I have been an open book about everything involving our family for years. I don't want anyone to think we hide anything, or are not proud of who we are. But my children are my world, and I will protect them above all else. No one wants their life plastered on a billboard, or the internet, or part of the daily hen house of moms chirping as they compare notes on what they know of someone. The same is true for my kids. They have a hard enough road. After much thought, I have decided that what is going on really doesn't need a public address. Those who need to know what is going on, are those who are part of the immediate care of my family of 5, yes, we all need care :). But other than that our world is going to become a little more private.
So as my last address to Julia's state, what they have found is horribly saddening, involves a lot of intense work, and most of our fears have come true. It means that we are a family with a big job ahead of us. We have three children who need to navigate this world in a way best for them, and for society. We have a plan, which involves big changes, small changes, a little fear but a lot of hope and faith.
As many of you are aware, we have put our house up for sale. Some of you know details, some of you know a few things, many of you are totally blown away by this. Please know we have been given an amazing opportunity to become an even stronger family of 5 than we ever could have imagined. Selling our house isn't easy, right now with showings and home inspections it is one more hump to get over.
So what can you do? We have been asked this a lot. Number one is keep those prayers going! Without faith we would have thrown in the towel a while ago. What Ella and Caleb need most is to be allowed to be kids. They have missed a great deal or the carefree life that comes with being a kid, part of the new plan is getting them to a place where they can do this. They don't want to talk about life, they don't want to learn something new, they just want to play, get muddy and laugh. If you want to help with Ella and Caleb, get ready to be a kid! For Jules, know that we were on the right track, and that reality is very hard. When you do see her, there is a very good chance she may not be comfortable talking. If she is just standing there, that's ok, if she wants to talk she will:). You don't have to try to engage her, she is happy just to be near people but not feel pressured to give an answer. She has a lot going on right now. The safest thing for Jules, is to learn to be Jules... and I am going to leave it at that. For me... OH MAN, there are so may things! After much thought and consideration I have realized what the hardest thing for me is.... not justifying my world. A good chunk of why I am so forthcoming with personal info is because in my heart I believed "if they could just see what we see, understand what is actually going on, THEN they would stop making it worse, or not believing." What I have realized is, that is doesn't matter. What I need to do is what is best for her, and what is best for her is for her world to be private and for her mother not to lose her mind soap boxing all the time... so here is it "don't ask me how things are going, or what's new, or how the kids are" Because you and I both know I will tell you! Ask me how Caleb's game went, did Julia draw anything lately, How is Ella's karate coming along... but for the love of God don't ask me how things are going! :) What about Ben? oh that poor poor man. Pray that he survives us all :P He needs a happy home to come home too. He needs to be able to go out with his friends and know that there isn't a ticking bomb at home because of it. Help the kids and I and you will be helping Ben.
Lastly, we are moving. Yes, yes we are. I realize there is a for sale sign in front of the house. I deal with elephants in the room all the time, but I would prefer not to go into detail on this one. All you need to know is that we are leaving our house, as a family of 5 (with a few extra helpers) and we are going to take some time to be a family. Honestly, there is a lot up in the air. We are all very excited for this new adventure and we love the support we are getting from all of you. That being said... for the next chapter, you are just going to have to wait to read the book :)
Wednesday, January 30, 2013
A growing family
A new year, many of us look back and reflect on the previous year. We started off last year under two different roofs. Julia was placed in a CBAT level of care the day following Christmas. It was an awful way to kick off 2012. We pushed on however, pushed on through school struggles, health concerns, finances, family issues, and the death of our little furry family member Merlin. Over all, not a year filled with rainbows and sunshine.
We are blessed however. If life were all rainbows and sunshine, we wouldn't appreciate them at all. As 2013 begins, we are beginning it with a growing family. What could be more of a blessing? Families are made in all sorts of ways. Some people choose the classic way of growing a family, births, boy meets girl... fall in love marriage. Our family.... not so much. But Family is God given, and God has blessed us. This past year we have been blessed with a Gramma, a Papa, a cousin, a few aunts and uncles, and a new sister in law. It was a big year of additions for us! Now, if you had to draw us on a family tree... we might not look so together, but that doesn't make us less of a family.
Sure, we knew each other before. But I think the beauty of a family, is the bond that holds them all together. We would not have made it without family around us. There were little things and big things, hard things and fun things, talks, tears, and prayers. The world could crumble right now, and I have so much faith that we would make it because of our family... you know, The Roberts, Converse, Billcliff family.... so as we start the new year, my first blog is a Thank you. Thank you to our family, who carried us through the storms, and made us stop to see the rainbows.
Sunday, December 16, 2012
be the help they need
In the few days following the horrific shooting in Newtown, CT there have been so many questions, opinions, and accusations. What happened was unacceptable, no one will argue that, but what is the root of the issue here? I can only speak about what I know, it hits close to home. I believe guns, in the wrong hands, are dangerous. An ignored mental health issue is deadly.
I read an article by a mother today entitled "I am Adam Lanza's mother," and it is a powerful story. She wrote from the heart of a mother dealing with a child who has a mental illness. There were several things she wrote that would so similar our family.
One of the first things that struck me is similar is that she wrote "I live with a son who is mentally ill. I love my son. But he terrifies me". To come to the realization that you fear a child is a hard place to be. They are just a child after all, and chances are they fear themselves just as much as you do. I also feel it is important to point out that she loves him beyond being terrified.
The second thing I picked up on was that her family has a plan for when things go wrong. Most families have fire drills, with very little expectation that they will ever use them. Emergency plans due to mental illness in the home are made because the need has already presented its self. Creating a plan to keep Ella and Caleb safe when Julia has an episode was not an easy task. Physically removing themselves is easy. Understanding at age 6 and 7 that when their sister becomes violent, self harming, screaming, and completely out of control that she is just as scared as they are is the hardest part of the safety plan. In the article the siblings of the mentally ill child without prompting knew to go to the car and lock the door. I am sure that the mother in this will agree, it is heart breaking to have a plan where your children have to shield themselves. For them to do it without a second thought is a hard reality as well.
The next part that I would like address is where the son apologizes, asks to get what was taken away back, and then when it doesn't happen he threatens more violence. This is a daily struggle in our home. Apologies come as a plea to reverse a punishment. When the apology doesn't "work" the repercussions are worse than the original issue.
The other part is where she wrote that "his face turned cold and his eyes well full of calculated rage". Part of a mental illness is how fast a switch can be flipped. Things can be ok, and then... they are not. With our situation it is the same way, things can be great and then with no warning to Julia or us, the rage is there. With our family, and our little one, the rage isn't over until she has completely run out of gas. This could mean 20 minutes or 2 hours. When it is over, her eyes always change back. But I want to make it very clear that knowing your child's face, characteristics, and personality is crucial in dealing with their mental illness correctly. Over the past three years I have learned how to monitor Jules well being, but her eyes are always how I can tell whether we are about to engage in a typical 6 year old meltdown, or a dangerous meltdown of a child affected by her illness.
The next part I would like to address is the paperwork the mother filled out once her son was at the facility. She did it with tear filled eyes. Let me tell you, twice now we have had to fill out that same paperwork, with the same tears. Let me explain something about children based mental health facilities, the beds are always hard to get, and your child does not get clearance to get in with out a reason. It is not a place to send your child so you can have a few days off.
Speaking solely from our experience, a "crisis" team comes out and talks with your child and with you. It takes several hours, then a recommendation is made by this team. We have had mobile crisis out three times. The first time they suggested Julia be moved to a CBAT level of care we said no. The latter times we had no choice. One of the hardest things for me, as a parent during the mobile crisis visits was listening to Julia speak from her heart and says such dark, scary things. Things no 4-6 year old should even know about, much less express. In the back of my mind most days I live with the thought that maybe I am just over reacting, maybe she really is fine and I am just seeing things that aren't there. Maybe the people who say she is cute and she seems fine, the ones that think she is too young to have such a severe illness, maybe they are all right... it use to be a constant ticker in my brain. But then, when you have to spend day after day going to visit your daughter on a child's mental health floor. After meetings, phone calls, and weeks of observation to sit there and listen to professional after professional tell you, that your fears are not only valid, but might be sugar coated....it is something no parent wants to be right about.
Lastly, I want to address what she wrote about how to get help. It broke my heart because of what she wrote on what she wanted to get out of her sons treatment. "i need help". Then the reply being that help is there but only when something goes wrong.Something went wrong with Adam Lanza, it's time to stop things before they go wrong. Unfortunately mental health solutions are not black and white. They don't come with one rule book. Every child dealing with a mental illness is different, every parent faces different struggles. Last year was a very hard year for us, mostly because of the lack of support the school system gave. I am not going to point fingers or soap box about what needs to be done in school systems. Parents are the most powerful advocate for a child. You have a voice, work with your school systems, educate together. Parents and teachers are the scaffolding for tomorrows future, the future needs to be one that knows how to handle mental illness, not ignore it.
A child suffering from a peanut allergy does not have a reaction until the nut is in that child's environment. The same rings true for a child dealing with a mental illness. The reaction does not present itself until the trigger enters that child's environment, regardless of what that trigger is. The effect maybe be minimal, parallel to a minor reaction to an allergy... perhaps just a rash. But the effect may also be great, in the same way a nut allergy can be deadly....so can a mental illness in a child. Especially one that goes unaddressed.
Most schools have peanut free classrooms, tables, etc. Every parent respects the severity of that allergy, and work together to send there child to school with no peanuts. It is time we started treating mental illnesses with the same respect. It's time we start working together to make our world respect the severity of mental illness. We don't walk up with a peanut to test the truth behind a parents claim on a peanut allergy. If a parent is brave enough to express concern about their child's mental health, be the help they need.
I read an article by a mother today entitled "I am Adam Lanza's mother," and it is a powerful story. She wrote from the heart of a mother dealing with a child who has a mental illness. There were several things she wrote that would so similar our family.
One of the first things that struck me is similar is that she wrote "I live with a son who is mentally ill. I love my son. But he terrifies me". To come to the realization that you fear a child is a hard place to be. They are just a child after all, and chances are they fear themselves just as much as you do. I also feel it is important to point out that she loves him beyond being terrified.
The second thing I picked up on was that her family has a plan for when things go wrong. Most families have fire drills, with very little expectation that they will ever use them. Emergency plans due to mental illness in the home are made because the need has already presented its self. Creating a plan to keep Ella and Caleb safe when Julia has an episode was not an easy task. Physically removing themselves is easy. Understanding at age 6 and 7 that when their sister becomes violent, self harming, screaming, and completely out of control that she is just as scared as they are is the hardest part of the safety plan. In the article the siblings of the mentally ill child without prompting knew to go to the car and lock the door. I am sure that the mother in this will agree, it is heart breaking to have a plan where your children have to shield themselves. For them to do it without a second thought is a hard reality as well.
The next part that I would like address is where the son apologizes, asks to get what was taken away back, and then when it doesn't happen he threatens more violence. This is a daily struggle in our home. Apologies come as a plea to reverse a punishment. When the apology doesn't "work" the repercussions are worse than the original issue.
The other part is where she wrote that "his face turned cold and his eyes well full of calculated rage". Part of a mental illness is how fast a switch can be flipped. Things can be ok, and then... they are not. With our situation it is the same way, things can be great and then with no warning to Julia or us, the rage is there. With our family, and our little one, the rage isn't over until she has completely run out of gas. This could mean 20 minutes or 2 hours. When it is over, her eyes always change back. But I want to make it very clear that knowing your child's face, characteristics, and personality is crucial in dealing with their mental illness correctly. Over the past three years I have learned how to monitor Jules well being, but her eyes are always how I can tell whether we are about to engage in a typical 6 year old meltdown, or a dangerous meltdown of a child affected by her illness.
The next part I would like to address is the paperwork the mother filled out once her son was at the facility. She did it with tear filled eyes. Let me tell you, twice now we have had to fill out that same paperwork, with the same tears. Let me explain something about children based mental health facilities, the beds are always hard to get, and your child does not get clearance to get in with out a reason. It is not a place to send your child so you can have a few days off.
Speaking solely from our experience, a "crisis" team comes out and talks with your child and with you. It takes several hours, then a recommendation is made by this team. We have had mobile crisis out three times. The first time they suggested Julia be moved to a CBAT level of care we said no. The latter times we had no choice. One of the hardest things for me, as a parent during the mobile crisis visits was listening to Julia speak from her heart and says such dark, scary things. Things no 4-6 year old should even know about, much less express. In the back of my mind most days I live with the thought that maybe I am just over reacting, maybe she really is fine and I am just seeing things that aren't there. Maybe the people who say she is cute and she seems fine, the ones that think she is too young to have such a severe illness, maybe they are all right... it use to be a constant ticker in my brain. But then, when you have to spend day after day going to visit your daughter on a child's mental health floor. After meetings, phone calls, and weeks of observation to sit there and listen to professional after professional tell you, that your fears are not only valid, but might be sugar coated....it is something no parent wants to be right about.
Lastly, I want to address what she wrote about how to get help. It broke my heart because of what she wrote on what she wanted to get out of her sons treatment. "i need help". Then the reply being that help is there but only when something goes wrong.Something went wrong with Adam Lanza, it's time to stop things before they go wrong. Unfortunately mental health solutions are not black and white. They don't come with one rule book. Every child dealing with a mental illness is different, every parent faces different struggles. Last year was a very hard year for us, mostly because of the lack of support the school system gave. I am not going to point fingers or soap box about what needs to be done in school systems. Parents are the most powerful advocate for a child. You have a voice, work with your school systems, educate together. Parents and teachers are the scaffolding for tomorrows future, the future needs to be one that knows how to handle mental illness, not ignore it.
A child suffering from a peanut allergy does not have a reaction until the nut is in that child's environment. The same rings true for a child dealing with a mental illness. The reaction does not present itself until the trigger enters that child's environment, regardless of what that trigger is. The effect maybe be minimal, parallel to a minor reaction to an allergy... perhaps just a rash. But the effect may also be great, in the same way a nut allergy can be deadly....so can a mental illness in a child. Especially one that goes unaddressed.
Most schools have peanut free classrooms, tables, etc. Every parent respects the severity of that allergy, and work together to send there child to school with no peanuts. It is time we started treating mental illnesses with the same respect. It's time we start working together to make our world respect the severity of mental illness. We don't walk up with a peanut to test the truth behind a parents claim on a peanut allergy. If a parent is brave enough to express concern about their child's mental health, be the help they need.
Thursday, November 1, 2012
Life As We Know It
Here we are, three years into our lives with Jules. Do we have it all figured out? certainly not! I will say that as a team we have become much more adapt to the world outside the box. It doesn't make life easy, or easier to explain to other people. Knowing that we are the world outside the box does make it easier to know that we don't have to convince those inside the box to understand. This makes it not only easier for us, but other's as well.
Julia suffers from PTSD, which in turn means that Ben, myself, Ella and Caleb also suffer from PTSD. We share the pain together. It is a very important part of our family. Explaining to a 6 and 7 year old that they need to bear the burden of a sibling that showed up in their life later in life than most siblings was not easy. Sometimes Ella and Caleb get it, sometimes they want their normal life back (who can blame them?!). I have come to realize that the children God blessed me with here on earth are some of the toughest people actually made. Many adults I know would crumble at what my kids put up with every day. Every day Julia has to put on her "super suit" and pretend life is OK and make it through until 3:14 when the school bell rings. Ella and Caleb have to make it through the cruel reality that people they don't remember made horrible choices that flipped their world upside down. Every day is filled with struggles the "average" family doesn't have to deal with. Halloween is a trigger, sub woofers are a trigger, masks are a trigger, too much dancing is a trigger, swimming is a trigger...etc. It is hit or miss every day, all the time. It is exhausting for all of us, but we work as a team. Through the screaming, tears, laughter, and learning...
No one promised an easy life. And I will admit, as I lay on my very uncomfortable couch bed in my living room, with no hope of a bedroom I can throw a pretty good temper tantrum , all due to the path I chose. I then seek further down though, leaning against a bunk bed, in the middle of the night making sure every one is snug, tucked in and warm and OK... I know... It's where I should be... right now, not matter what.
Julia suffers from PTSD, which in turn means that Ben, myself, Ella and Caleb also suffer from PTSD. We share the pain together. It is a very important part of our family. Explaining to a 6 and 7 year old that they need to bear the burden of a sibling that showed up in their life later in life than most siblings was not easy. Sometimes Ella and Caleb get it, sometimes they want their normal life back (who can blame them?!). I have come to realize that the children God blessed me with here on earth are some of the toughest people actually made. Many adults I know would crumble at what my kids put up with every day. Every day Julia has to put on her "super suit" and pretend life is OK and make it through until 3:14 when the school bell rings. Ella and Caleb have to make it through the cruel reality that people they don't remember made horrible choices that flipped their world upside down. Every day is filled with struggles the "average" family doesn't have to deal with. Halloween is a trigger, sub woofers are a trigger, masks are a trigger, too much dancing is a trigger, swimming is a trigger...etc. It is hit or miss every day, all the time. It is exhausting for all of us, but we work as a team. Through the screaming, tears, laughter, and learning...
No one promised an easy life. And I will admit, as I lay on my very uncomfortable couch bed in my living room, with no hope of a bedroom I can throw a pretty good temper tantrum , all due to the path I chose. I then seek further down though, leaning against a bunk bed, in the middle of the night making sure every one is snug, tucked in and warm and OK... I know... It's where I should be... right now, not matter what.
Tuesday, August 7, 2012
3 years
Three years ago I took everything that I thought was secure and normal and tossed it out the window. Three years ago I learned that someone else's bad decisions (who I didn't even speak to at the time) would forever impact my life, my children, my family, my friends... well everything! Looking back now, three years seems like forever ago. At the time, the kids were 2,3,4!! they are now 5,6,7!
So what has 3 years brought? It is a hard question to ask myself. I look at my kids now, in comparison to three years ago and I see the strongest bunch of children around. Ones that fight for whats right, love no matter what, accept others how they show up and not how they wish they would be, but they have also all learned that the life doesn't have a map. That there is no guaranteeing it is going to work out how they saw it going. That is a very deep concept for a bunch of kids to accept.
I am blessed to have the children I do. Julia, for obvious reasons makes me proud, she is a survivor and refuses to give up. 110% of my time over the past 3 years has been spent on behalf of Julia. Fives meetings a week for a year was no walk in the park, on top of the monotonous job of having a child who is developmentally delayed to the point where there are weeks we need to remind her when to use the bathroom, remind her to swallow food, how to get dressed, when to walk, literally to breathe. As many of you know, we don't do babysitters unless we have to, thank goodness for family! But even then the repercussions of Julia being in the care of someone else usually leads to more time and effort to get her back to where she needs to be. So where does that leave Ella and Caleb? Standing strong, waiting patiently while the majority of everyone in their life gives most of their attention to Julia. I could not have asked for better children. To be constantly put on the back burner and still have smiles on their faces, love for their sister, understanding for when Ben and I have to focus once again on Julia... they truly are amazing beings.
What else has the past 3 years brought? It has brought a better understanding of other people. First, I have a much greater respect for parents with children with special needs. There is no way to explain it really, other than it is just a different way of life. Everything is different, meals, errands, brushing teeth, even sleeping! No child is exactly the same, but a child with special needs bring an entirely new aspect to the table. One that in many cases never changes even into adult hood. There are also joys that come along that parents of typical kids will not experience. I never would have understood this four years ago. What's the big deal... you went to the store... people do it everyday with three kids. I was there, 'how hard could it be?' ... that was my thought. I remember after many many meetings and even a trip to the store with Julia's family partner we finally took a successful trip to the store!! (let me just add in now, success is measured a little differently too). I remember walking out of the store heading to the van with a grin like I had just won power ball. The best part was, looking behind me were 3 kids... all with the same size grin.
Lastly, and the hardest for me to deal with is being proud of how far we have come ( That struggle is for another day and another post :)). When we began this journey there was many hurt feelings, hard choices, mistakes, struggles, and tears...so many tears. I remember making an appointment with Julia's pediatrician balling my eyes out that my family was now destroyed and I couldn't make it better. First of all, let me say, the most important thing he said to be was 'I believe you'. To have some one believe what our home life is like and now just say "but she is just so cute, I am sure she will be fine" was like someone throwing us a life raft. So off we went, evaluations, 10 visits to Boston within 10 weeks, then a team of professionals (hence the 5 meetings a week). It was intense to say the least, what kids like to sit through any meetings, much less several a week! But now, as we are left with only a few meetings here and there now I can honestly say I am proud of us. Do we have it all figured out? no! but honestly... show me someone who does. I am proud I stuck with it, proud of the supports that stuck around, proud to say I don't know it all but we take each step as a family and we are better for it.
So in conclusion, three years has brought us a feeling of permanency. It isn't a feeling that you can force, it is no one everyone needs to learn, because to be honest you can't really get that feeling of permanence until you have lost that feeling. It's the little things that turn into the big things, and I have learned what I thought were the big things, really in comparison were the little things. I have three little things that are the biggest things in my life, and I am blessed to have spent the past 3 years with them... because I am sure the next three years are going to fly by too!
So what has 3 years brought? It is a hard question to ask myself. I look at my kids now, in comparison to three years ago and I see the strongest bunch of children around. Ones that fight for whats right, love no matter what, accept others how they show up and not how they wish they would be, but they have also all learned that the life doesn't have a map. That there is no guaranteeing it is going to work out how they saw it going. That is a very deep concept for a bunch of kids to accept.
I am blessed to have the children I do. Julia, for obvious reasons makes me proud, she is a survivor and refuses to give up. 110% of my time over the past 3 years has been spent on behalf of Julia. Fives meetings a week for a year was no walk in the park, on top of the monotonous job of having a child who is developmentally delayed to the point where there are weeks we need to remind her when to use the bathroom, remind her to swallow food, how to get dressed, when to walk, literally to breathe. As many of you know, we don't do babysitters unless we have to, thank goodness for family! But even then the repercussions of Julia being in the care of someone else usually leads to more time and effort to get her back to where she needs to be. So where does that leave Ella and Caleb? Standing strong, waiting patiently while the majority of everyone in their life gives most of their attention to Julia. I could not have asked for better children. To be constantly put on the back burner and still have smiles on their faces, love for their sister, understanding for when Ben and I have to focus once again on Julia... they truly are amazing beings.
What else has the past 3 years brought? It has brought a better understanding of other people. First, I have a much greater respect for parents with children with special needs. There is no way to explain it really, other than it is just a different way of life. Everything is different, meals, errands, brushing teeth, even sleeping! No child is exactly the same, but a child with special needs bring an entirely new aspect to the table. One that in many cases never changes even into adult hood. There are also joys that come along that parents of typical kids will not experience. I never would have understood this four years ago. What's the big deal... you went to the store... people do it everyday with three kids. I was there, 'how hard could it be?' ... that was my thought. I remember after many many meetings and even a trip to the store with Julia's family partner we finally took a successful trip to the store!! (let me just add in now, success is measured a little differently too). I remember walking out of the store heading to the van with a grin like I had just won power ball. The best part was, looking behind me were 3 kids... all with the same size grin.
Lastly, and the hardest for me to deal with is being proud of how far we have come ( That struggle is for another day and another post :)). When we began this journey there was many hurt feelings, hard choices, mistakes, struggles, and tears...so many tears. I remember making an appointment with Julia's pediatrician balling my eyes out that my family was now destroyed and I couldn't make it better. First of all, let me say, the most important thing he said to be was 'I believe you'. To have some one believe what our home life is like and now just say "but she is just so cute, I am sure she will be fine" was like someone throwing us a life raft. So off we went, evaluations, 10 visits to Boston within 10 weeks, then a team of professionals (hence the 5 meetings a week). It was intense to say the least, what kids like to sit through any meetings, much less several a week! But now, as we are left with only a few meetings here and there now I can honestly say I am proud of us. Do we have it all figured out? no! but honestly... show me someone who does. I am proud I stuck with it, proud of the supports that stuck around, proud to say I don't know it all but we take each step as a family and we are better for it.
So in conclusion, three years has brought us a feeling of permanency. It isn't a feeling that you can force, it is no one everyone needs to learn, because to be honest you can't really get that feeling of permanence until you have lost that feeling. It's the little things that turn into the big things, and I have learned what I thought were the big things, really in comparison were the little things. I have three little things that are the biggest things in my life, and I am blessed to have spent the past 3 years with them... because I am sure the next three years are going to fly by too!
Friday, June 29, 2012
new paint
It's funny, when you find out your are going to be a parent all these thoughts go through your head. What kind of parent will I be? What will I do differently than my parents did, what will I do the same? Then you become a parent and all you can think of is 'When will I ever sleep again!'. As kids grow up your fears, frustrations, accomplishments and challenges change. You go from teaching them how to walk to how to stop walking and check for traffic, putting food in your mouth to not stuffing your face. Each stage has some level of expectation to aim for. Stages also come with challenges and trials, some predictable ones and some that you just didn't see coming. Potty training, for example, is a common trial that almost every parent has so go through... it sucks, but eventually the outcome is no more dirty diapers. It's a stage.
Stages with a child with special needs is a little different. The expectations are a little different, if there are any, the time line is also different. Sometimes it is very frustrating to see other children bopping along milestones and growth charts while yours struggles with seemingly easy situations. Children of trauma see the world differently than those who have yet to face life's real trials. Unless you can accept the idea that you don't see what they see and just help them navigate their reality it is impossible to understand.
Today, after months of unintentionally putting it off (or so I thought) I decided to repair the girls walls in their room. The walls are only two years old, but they are riddled with holes and scratches. These came from the pain and anger of a very small girl, a girl who if she could have would have chosen any other way to explain how she feels. In the moment there was a child who could care less about the safety of herself or others, there was anger she couldn't understand. As I painted today, I was accompanied by that same little girl. She sat quietly at first, then slowly and with thought said " I am sorry I did that, I will try not to do it again". I hear I am sorry all the time from my 3 kids. This time it stopped me in my tracks. I told her I know she didn't mean it and that this paint was taking the hurt away.
In all my parenting prepping years, never did I think one of the more powerful conversations I would have would be about painting a wall. We have many set backs and many milestones. You never know when they are going to come, or how you will react when it does happen. I thank God today, that I painted the wall and the little child next to me is a survivor.
Stages with a child with special needs is a little different. The expectations are a little different, if there are any, the time line is also different. Sometimes it is very frustrating to see other children bopping along milestones and growth charts while yours struggles with seemingly easy situations. Children of trauma see the world differently than those who have yet to face life's real trials. Unless you can accept the idea that you don't see what they see and just help them navigate their reality it is impossible to understand.
Today, after months of unintentionally putting it off (or so I thought) I decided to repair the girls walls in their room. The walls are only two years old, but they are riddled with holes and scratches. These came from the pain and anger of a very small girl, a girl who if she could have would have chosen any other way to explain how she feels. In the moment there was a child who could care less about the safety of herself or others, there was anger she couldn't understand. As I painted today, I was accompanied by that same little girl. She sat quietly at first, then slowly and with thought said " I am sorry I did that, I will try not to do it again". I hear I am sorry all the time from my 3 kids. This time it stopped me in my tracks. I told her I know she didn't mean it and that this paint was taking the hurt away.
In all my parenting prepping years, never did I think one of the more powerful conversations I would have would be about painting a wall. We have many set backs and many milestones. You never know when they are going to come, or how you will react when it does happen. I thank God today, that I painted the wall and the little child next to me is a survivor.
Thursday, June 14, 2012
Summer Vacation!
It's about time! As many of you know this year has not been pleasant with the school system. Summer vacation is a welcomed time in this family. Meetings, Department of Education, School committee, Advocated hundreds of emails, phone calls, letters and conversations... none of which were fun. Who knew being a proactive parent could be such a bad thing when it came to a school. Over the summer the Superintendent of schools will be looking through all their special education classes and finding the right fit for Julia. although nothing is resolved yet we do feel our voice, and the voices of others have started to be heard. I did however assure the Superintendent that I would not be satisfied until all the voices were heard, that appeasing me isn't good enough now, that there is a problem that needs to be fix. So what came of this year? Julia ended up being a blessing to many kids, some of who she will never meet, because she had a need and the need wasn't met mama bear and papa bear stepped in. We stood our ground, said what we needed and went to those that could help. Fighting for what you child needs in a school system is never fun, but at least now the parents in our school will be heard in the upcoming school year... something new thanks to Julia :)
That being said BRING ON SUMMER VACATION!
That being said BRING ON SUMMER VACATION!
Thursday, March 22, 2012
what the kin?
Julia is adopted.....we hear it a lot.... that is how rumors get spread people! just kidding, but really she is not adopted, nor will she ever be. ( it is a little like calling a Chinese person Japanese.)
We are what is known as a kinship family. Julia was family before, she is family now. A kinship family is a family connected by blood in someway. Julia is part of our family, she always will be. We met Julia the day she was born, August 16,2006 she was our niece. One October 28,2009 we became her guardians by the state on New Hampshire. On April 19, 2011 the state of Massachusetts awarded us as Julia's guardians. Legally, we are Julia's guardians.
On February 19,2011 we became "mom and dad" to Julia. Does that mean we adopted her? nope. She has a biological mother and father, she always will, she will always have the last name Billcliff. It makes her who she is, she is Julia Kathleen Billcliff. She will never be Julia Roberts (She is way cooler than her anyway).
13% of the county we live in is part of a kinship family. 78% of those families are grandparents raising grandchildren. Life doesn't come with a manual, it doesn't come in a pretty little package. It comes from experience and the willingness to learn about those around you. The folks at 3 Fales Ave are a kinship, and we are proud of that two different last names is ok... it just means more family and support :)
We are what is known as a kinship family. Julia was family before, she is family now. A kinship family is a family connected by blood in someway. Julia is part of our family, she always will be. We met Julia the day she was born, August 16,2006 she was our niece. One October 28,2009 we became her guardians by the state on New Hampshire. On April 19, 2011 the state of Massachusetts awarded us as Julia's guardians. Legally, we are Julia's guardians.
On February 19,2011 we became "mom and dad" to Julia. Does that mean we adopted her? nope. She has a biological mother and father, she always will, she will always have the last name Billcliff. It makes her who she is, she is Julia Kathleen Billcliff. She will never be Julia Roberts (She is way cooler than her anyway).
13% of the county we live in is part of a kinship family. 78% of those families are grandparents raising grandchildren. Life doesn't come with a manual, it doesn't come in a pretty little package. It comes from experience and the willingness to learn about those around you. The folks at 3 Fales Ave are a kinship, and we are proud of that two different last names is ok... it just means more family and support :)
Monday, February 27, 2012
sunglasses it is then!
Over Christmas break and into the start of the new year Julia spent some time at a CBAT level of care in Boston. It wasn't an easy decision, it never is, but it came down to safety. For weeks Julia was observed by, met with, and interacted with several professionals to try to get to the root of some of Julia's dissociation tantrums. In the end, there was significant progress! Some medication changes, new coping skills and tools, and more tests lined up. We got to work closely with the members of Julia's team at the facility, along with our current team. It is such a blessing to have so many people to help out!
So what have we been up to since Julia is home? She has a coping tent in her room she can go into if she is feeling confused or frustrated, filled with blankets, stuffed animals, stress balls, cubes, coloring, and pictures. I can't say enough good things about this tent! Who wouldn't want a tent to escape into when the world got to much!
Julia also brought home a bear to pass around each night to someone for doing something special, as a tool to teach that everyone is important in the family, even if they don't have several needs. For an example, over February vacation Julia got the bear one night for unlocking the door to the girls room....since Caleb so nicely waited until Ben, Ella, myself and him were in it to lock it from the outside. Thank goodness Jules was there to get us out! Heroes come in all sizes for all reasons :)
She has a new understanding of what is a correct response to anger and confusion, and what is a dangerous one. Kim, one of the therapists that comes each week has been working diligently on understanding different feelings and emotions. We even took a field trip to the library last week with Kim and Barbara to read a story! (who said therapy can't be fun!)
One of the other things that Julia brought home was information from those who worked with her. I don't know anyone that enjoys waiting for results of tests, for themselves or for someone they love. It is a new world for me when it comes to Mental disorders and how to treat them, what to do in every situation and what not to do. So the anxiety of waiting to see what weeks of getting in my daughters brain to find out what she thinks was not a walk in the park. What if I was the problem? What if she doesn't really feel safe at home? what if whatever they find is something I can't help Julia with? What could this poor kid possibly have going on in side of her?
The discharge paperwork was insightful, helpful, encouraging and yet still so heartbreaking at the same time. We are doing what we should be doing, which is great... but why didn't it help? Well my friends, because as it was put to us "we have a very long road ahead of us". By long road, they mean life long... just in case there was any confusion there. Julia did great in her placement, showed who she was, what she felt, and where she was coming from to the best of her ability. The best part about where she was is that they understood the way she was communicating, and not just how she appeared to be.
So what's with the sunglasses? ( I know you were wondering :P) Julia has issue with staring, pretty much all the time non-stop. This can be problematic when where you are staring isn't where you are walking, or eating, or playing etc. One of our bigger issues is at the dinner table. Julia stares at everyone to see what they are doing, it can be messy at times, both when she misses her mouth because of it and how upset the other two get when she is staring. So now, if you come to dinner at our humble abode, you will be dining with a happy girl in gem trimmed sunglasses. A girl who no longer feels bad about constantly staring, a girl who no longer gets spoken to several times during the meal. Instead you will be dining with a little girl, in pretty glasses, a smile on her face... still staring.... it's what she does, but with the confidence to keep on trucking :)
Did it come from a professional? no. Is it rude to eat with sunglasses on? perhaps. Do people ask about them when they see her in them? you bet! Is she proud of who she is... sunglasses and all? absolutely! So is her big brother and big sister. Life isn't about trying your best to fit the mold. Life is about living, loving, and learning. Julia is learning to love living. The struggles aren't going to go away, there will be ups and downs. No one is going to have all the answers for her, she will choose her path. Some days that path may bring her inside her tent confused frustrated and upset. Some days that path may be full of clarity and smiles... either path she chooses, the 4 of us will be with her, proud of who she is, sunglasses and all :)
So what have we been up to since Julia is home? She has a coping tent in her room she can go into if she is feeling confused or frustrated, filled with blankets, stuffed animals, stress balls, cubes, coloring, and pictures. I can't say enough good things about this tent! Who wouldn't want a tent to escape into when the world got to much!
Julia also brought home a bear to pass around each night to someone for doing something special, as a tool to teach that everyone is important in the family, even if they don't have several needs. For an example, over February vacation Julia got the bear one night for unlocking the door to the girls room....since Caleb so nicely waited until Ben, Ella, myself and him were in it to lock it from the outside. Thank goodness Jules was there to get us out! Heroes come in all sizes for all reasons :)
She has a new understanding of what is a correct response to anger and confusion, and what is a dangerous one. Kim, one of the therapists that comes each week has been working diligently on understanding different feelings and emotions. We even took a field trip to the library last week with Kim and Barbara to read a story! (who said therapy can't be fun!)
One of the other things that Julia brought home was information from those who worked with her. I don't know anyone that enjoys waiting for results of tests, for themselves or for someone they love. It is a new world for me when it comes to Mental disorders and how to treat them, what to do in every situation and what not to do. So the anxiety of waiting to see what weeks of getting in my daughters brain to find out what she thinks was not a walk in the park. What if I was the problem? What if she doesn't really feel safe at home? what if whatever they find is something I can't help Julia with? What could this poor kid possibly have going on in side of her?
The discharge paperwork was insightful, helpful, encouraging and yet still so heartbreaking at the same time. We are doing what we should be doing, which is great... but why didn't it help? Well my friends, because as it was put to us "we have a very long road ahead of us". By long road, they mean life long... just in case there was any confusion there. Julia did great in her placement, showed who she was, what she felt, and where she was coming from to the best of her ability. The best part about where she was is that they understood the way she was communicating, and not just how she appeared to be.
So what's with the sunglasses? ( I know you were wondering :P) Julia has issue with staring, pretty much all the time non-stop. This can be problematic when where you are staring isn't where you are walking, or eating, or playing etc. One of our bigger issues is at the dinner table. Julia stares at everyone to see what they are doing, it can be messy at times, both when she misses her mouth because of it and how upset the other two get when she is staring. So now, if you come to dinner at our humble abode, you will be dining with a happy girl in gem trimmed sunglasses. A girl who no longer feels bad about constantly staring, a girl who no longer gets spoken to several times during the meal. Instead you will be dining with a little girl, in pretty glasses, a smile on her face... still staring.... it's what she does, but with the confidence to keep on trucking :)
Did it come from a professional? no. Is it rude to eat with sunglasses on? perhaps. Do people ask about them when they see her in them? you bet! Is she proud of who she is... sunglasses and all? absolutely! So is her big brother and big sister. Life isn't about trying your best to fit the mold. Life is about living, loving, and learning. Julia is learning to love living. The struggles aren't going to go away, there will be ups and downs. No one is going to have all the answers for her, she will choose her path. Some days that path may bring her inside her tent confused frustrated and upset. Some days that path may be full of clarity and smiles... either path she chooses, the 4 of us will be with her, proud of who she is, sunglasses and all :)
Wednesday, January 4, 2012
beyond what your eyes can see
Unfortunately through the past few years we have seen a common thread among people we encounter with Julia. And it usually plays out the same. We often get questions, followed by advice, ending with "well you would never know it" or "I have never seen it".
It is funny how people view a mental disorder differently than a physical one. If someone is diabetic do you doubt them based on the fact that you have not seen them go into diabetic shock? An epileptic who you have not seen seizure? Perhaps for the many migraine sufferers out there, it doesn't show... but that does not make the pain any less. So why don't these people go around showing signs of their medical conditions throughout their day? Most people try to stay on top of there medical condition through heading the adviceof experts, medicine, avoiding public if the symptoms seem to be increasing, or trying to keep it together long enough to get through a public encounter...
It is no different with a mental disorder. Julia's day is full of coping, soothing, confidence building tools from experts so that when she does go out in society she can hold it together. Some times it works, sometimes it doesn't. The days she does hold it together a toll is taken on her already fragile state. Once she is in the safety of her home Jules usually lets down her guard, which makes it hard sometimes, but understanding is the first step to helping.
Learning to see beyond what my eyes could see in Julia has helped me understand her heart, her ambition, and who she is in ways I would have missed if I stuck to my own ignorance.
It is funny how people view a mental disorder differently than a physical one. If someone is diabetic do you doubt them based on the fact that you have not seen them go into diabetic shock? An epileptic who you have not seen seizure? Perhaps for the many migraine sufferers out there, it doesn't show... but that does not make the pain any less. So why don't these people go around showing signs of their medical conditions throughout their day? Most people try to stay on top of there medical condition through heading the adviceof experts, medicine, avoiding public if the symptoms seem to be increasing, or trying to keep it together long enough to get through a public encounter...
It is no different with a mental disorder. Julia's day is full of coping, soothing, confidence building tools from experts so that when she does go out in society she can hold it together. Some times it works, sometimes it doesn't. The days she does hold it together a toll is taken on her already fragile state. Once she is in the safety of her home Jules usually lets down her guard, which makes it hard sometimes, but understanding is the first step to helping.
Learning to see beyond what my eyes could see in Julia has helped me understand her heart, her ambition, and who she is in ways I would have missed if I stuck to my own ignorance.
Wednesday, December 7, 2011
what do you do?
We all learn differently. We have different interests, passions, dislikes, skills and struggles. If we all learned the same there wouldn't be half the new discoveries we have today. So it is that each child learns differently.
So what do you do with a child who has so many different levels of development? What we have learned is to start from the beginning and work forward. Julia has an amazing academic intellect, she has an amazing passion for the arts, which makes sense with her being such a great visual learner.
Over the past month or so we have once again tweaked our parenting approach ( I think we may have it figured out by the time we retire!). We had to look at Julia, who she was, where she has come from, where she wants to be and how we can help her get to a positive place. Through the help of our team and some other exterior supports we have worked very hard once again to make the scaffolding for Julia's daily interactions. It isn't easy! As most of you know i am a HUGE creature of habit and I never like to admit defeat. So changing things is never an easy task in my world!
So where are we at now? We have made some progress and we have regressed. Most of our tactics mimic the parenting a one year old right now. It has taken a lot to go back to toddler world, but it has also brought a new peace of not micro managing (don't worry, i am still micromanaging the cats). With this peace however has brought up for Julia truly where she is developmentally.
My mom read a story one time about where to guide a student. A student got a A, a B, and a D, so which subject do you make him/her work at? My natural instinct would be the D... pull up that grade! Who wouldn't want to make the D better? The answer is A. The A is what they are good at, what they are passionate about, what the feel in their heart... that is what you encourage then! Julia loves the arts, so that is where we are at. We have a 5 year old with strong struggles, but she has a passion for art. So we plug away everyday at the struggles, but we encourage the passions; coloring, movement, stories, music etc.
She is Julia, made by God. We are doing are best to help her cope and give her the tools to thrive, with the end goal of being understood by her peer group. Jules family partner and I were talking yesterday and I think we might be onto something... "no one in life is totally stable, it is all in how you use your resources" :)
So what do you do with a child who has so many different levels of development? What we have learned is to start from the beginning and work forward. Julia has an amazing academic intellect, she has an amazing passion for the arts, which makes sense with her being such a great visual learner.
Over the past month or so we have once again tweaked our parenting approach ( I think we may have it figured out by the time we retire!). We had to look at Julia, who she was, where she has come from, where she wants to be and how we can help her get to a positive place. Through the help of our team and some other exterior supports we have worked very hard once again to make the scaffolding for Julia's daily interactions. It isn't easy! As most of you know i am a HUGE creature of habit and I never like to admit defeat. So changing things is never an easy task in my world!
So where are we at now? We have made some progress and we have regressed. Most of our tactics mimic the parenting a one year old right now. It has taken a lot to go back to toddler world, but it has also brought a new peace of not micro managing (don't worry, i am still micromanaging the cats). With this peace however has brought up for Julia truly where she is developmentally.
My mom read a story one time about where to guide a student. A student got a A, a B, and a D, so which subject do you make him/her work at? My natural instinct would be the D... pull up that grade! Who wouldn't want to make the D better? The answer is A. The A is what they are good at, what they are passionate about, what the feel in their heart... that is what you encourage then! Julia loves the arts, so that is where we are at. We have a 5 year old with strong struggles, but she has a passion for art. So we plug away everyday at the struggles, but we encourage the passions; coloring, movement, stories, music etc.
She is Julia, made by God. We are doing are best to help her cope and give her the tools to thrive, with the end goal of being understood by her peer group. Jules family partner and I were talking yesterday and I think we might be onto something... "no one in life is totally stable, it is all in how you use your resources" :)
Saturday, October 29, 2011
sometimes it's best to say no
One of the things we are often faced with is where to draw the line for what Julia can handle and what she can't handle. With the start of school has come invitations, functions, play date requests etc. No one can say yes to everything, but how do you know when it is going to be a good experience or a bad one? Some of it is trial and error, some of it is knowing Julia. At this point in our journey Ben and I can safely say we know Julia the best. We know what helps a good day continue, what makes a bad day get worse, what cheers up, what brings down. We also know some things to look out for in her mannerisms. With Post Traumatic Stress Disorder comes a slew of different scenarios each day. Everything can be going great and then as if a switch was flipped the rest of the day is a disaster. Maybe it was a smell, a feeling, something she saw, a memory that jumped back in for a moment, a combination of the two or just her delayed social/emotional behavior trying to process everything that is going on every day. When we have one of these days with Jules the best thing to do is bring her back to reality, even if it means saying no to something fun. Is she then being punished for her earlier trauma is doing to her? No, in fact it is simply protecting her. Stimulating a child who has PTSD on an off day is like poking a bear, it only ends badly. We made several attempts to just go with it and still bring her to functions regardless of what her state of mind was. Why not? No one likes to miss out on fun! But after enough failed attempts we learned it is better for everyone if we teach her to know her limits. Empowering her to know her limits will help build a foundation for her throughout life to keep herself safe, even if it means missing out on some fun.
Wednesday, October 19, 2011
Is it even worth it?! (yes!!!)
As many of you know Ben and I are going away for a few days. As we prep the kids with their stay to grammy and grampy's (thank you so much!!) we are faced with yet another result of Julia's earlier years. Julia gets mad when we go away. With good reason she often has little faith that when we leave we are going to return, and words mean nothing to her. So Julia's way to show her fear and anger for this is to make the days leading up to going away as hard as she can for us. Yelling, screaming, hitting, and just all around defiance fills our days. We do what we can to just move on and deal with what we need to and not everything little thing. It is one of the more exhausting things we deal with at this point. We can leave for a night, a day, even when Ella is at children's for a few days we are met with such defiance. The return is much the same, it takes days for her to get herself back to a calm state from the simple reason that we came back. Packing for something is hard in itself, getting kids ready also a challenge. I have an amazing respect for parents with children who have special needs who brave going on vacation. the before and after often seem to cloud and overpower the R and R in the middle. That being said, off we go, to take a break, breathe and get some energy back to brave the return :)
Thursday, September 29, 2011
meetings meetings meeting
so many meetings! Those of you who have the privilege of interacting with us during the week know that we are in and out of meetings all the time. So i thought i would just recap what all the meetings are for. We have several people on the team right now, and each one plays a very specific role in helping our family move forward.
We have a case manager who I meet with on a weekly basis. Her role is to help brainstorm what our needs are, how they can be met and what goals we have already met.
We have an In Home Therapist who we also meet with at least on a weekly basis. Her role varies according to what we need most. Sometimes she meets with just me and we talk about my daily stresses, how I can better my relationship with Julia, how to interact with the public, how to handle things that come our way, that is her life coach role. She is also in charge of helping all 5 of us communicate as a family. Even without a complicated dynamic most families have a hard time communicating within themselves. Our IHT is in many ways like a translator for all of us to the rest of the family. She also is a fountain of knowledge for research and techniques. In many ways like "tricks of the trade" for dealing with a child with special needs.
We have a family planner who I meet with weekly. Her role is to make us look like a functioning family (good luck to her!). She helps with looking at a particular struggle we may be having and finding solutions. She has been out on errands with us, interacted with us, brainstormed solutions, rehashed old ideas, new ideas, i even get to do crafts with her!!
We have a trauma therapist who Julia meets with weekly. Her job is to help Julia work through her past. Sometimes I attend her meetings, sometimes just Julia does. We have all been to a meeting. Sometimes Ella and Caleb are in the meetings. It really depends on the week and what is needed. Julia has been giving some tools to help control her anger from this therapist, and we have gotten some amazing incite into the mind of a traumatized child.
We have added a new member to the team this week, for weekly visits. Her role is to interact with the kids. She is going to be doing this one on one, or with two, or with all three of them. It all depends on the need that week. She will be helping out with interaction, rules, tools etc. She will be doing it for the children as the IHT helps me to help the kids.
That is our professional team in a nut shell. As you can see that leaves me with a minimum of 5 meetings a week. They are a very knowledgeable group who has made it possible for our family to make steps forward, and when we regress the strength and guidance to push harder to get to our goals. To be honest I think every family with children should be given a team of experts to help them through life. We have learned so much, and are always tweaking what we do so that we are doing what is best for our family.
We have a case manager who I meet with on a weekly basis. Her role is to help brainstorm what our needs are, how they can be met and what goals we have already met.
We have an In Home Therapist who we also meet with at least on a weekly basis. Her role varies according to what we need most. Sometimes she meets with just me and we talk about my daily stresses, how I can better my relationship with Julia, how to interact with the public, how to handle things that come our way, that is her life coach role. She is also in charge of helping all 5 of us communicate as a family. Even without a complicated dynamic most families have a hard time communicating within themselves. Our IHT is in many ways like a translator for all of us to the rest of the family. She also is a fountain of knowledge for research and techniques. In many ways like "tricks of the trade" for dealing with a child with special needs.
We have a family planner who I meet with weekly. Her role is to make us look like a functioning family (good luck to her!). She helps with looking at a particular struggle we may be having and finding solutions. She has been out on errands with us, interacted with us, brainstormed solutions, rehashed old ideas, new ideas, i even get to do crafts with her!!
We have a trauma therapist who Julia meets with weekly. Her job is to help Julia work through her past. Sometimes I attend her meetings, sometimes just Julia does. We have all been to a meeting. Sometimes Ella and Caleb are in the meetings. It really depends on the week and what is needed. Julia has been giving some tools to help control her anger from this therapist, and we have gotten some amazing incite into the mind of a traumatized child.
We have added a new member to the team this week, for weekly visits. Her role is to interact with the kids. She is going to be doing this one on one, or with two, or with all three of them. It all depends on the need that week. She will be helping out with interaction, rules, tools etc. She will be doing it for the children as the IHT helps me to help the kids.
That is our professional team in a nut shell. As you can see that leaves me with a minimum of 5 meetings a week. They are a very knowledgeable group who has made it possible for our family to make steps forward, and when we regress the strength and guidance to push harder to get to our goals. To be honest I think every family with children should be given a team of experts to help them through life. We have learned so much, and are always tweaking what we do so that we are doing what is best for our family.
Thursday, August 18, 2011
Prayer Requests
We are often asked how people can pray for us, so I thought it would make sense to answer it here :)
1. Endurance. When faced with a child who suffers with a disorder or a disability of any sort it takes it's tole on the entire family. Some days it is hard to see the light at the end of the tunnel, simply put because some days there is no light.
2. Patience. Three children isn't easy street. I have many friends who understand that first hand. Having one child with a disorder, one child with some significant health concerns, and one poor healthy little boy with no squeak in his wheel presents it's own delicate dynamic on how life works.
3.Understanding. I think it goes without saying that our life isn't quite the norm. so what? Ben and I have had to make some very hard choices in the past two years. have they all been right?..... absolutely not! don't tell anyone, but we are human too!! that being said we have had the blessing to have a very qualified, caring and educated team of professionals working with us since last November on how to help our family work. I can not say enough about them! They work with our values and faith and every week through several meetings come up with a plan. Some tactics are to help Julia, some are to help Ella and Caleb, some are to help the family and some are to help Ben and myself. One of the biggest obstacles Ben and I run into are people who think they know how to better handle a situation. It is hard sometimes to have the guts to just stick to our guns because we know what we are doing is what needs to be done for our family. It is going to sound silly, but I have a very hard time standing up for myself. So the prayer request there is understanding for those looking in, that they see Ben and I have given it go God and he is guiding us along. Not for understanding as to why we do what we do, just to understand that what we are doing and how we do it is what is best for our family. Roberts, family of 5.
4.Space. Everyone needs their own right? As most of your know, all three children live in one room. we have 850 sq ft of room in our home. Let me say that I am thankful for the 850sq ft. For those of you who have been following Ben and I from 1999, you know what we started with and where we have gotten. Coming from credit card deb, totaled cars, and student loans, to marriage in 2002, a pregnancy in 2003 which tested our faith in March of 2004, Ella in 2005, Caleb in 2006 we have come a long way in our short lives together. Our home gives us shelter, safety, love, friendships, fellowship and opportunity. If need be, we will live in that space forever. That being said, I have been staring at some rough drafts of an expansion on our house thanks to a very sweet couple who I can not say enough about, so I will just leave it as they are more inspirational than they know, and also are a welcome smile when faced with the reality of sitting in children's hospital with the unknown ahead of them ;). We are ready for what God has in store for us, if he has more "store"age for us that would be nice too :)
Using resources
As many of you know Julia spent the past few weeks at in inpatient campus for children. The goal was to observe her and try to help her manage some of her more pressing issues.
Julia was officially discharged today. The past few weeks have been long, between meetings and decisions and keeping everything as normal as possible. So what was the point of her stay? Julia struggles greatly everyday with a few disorders. Ben and I are parents, we love, we care, we protect, but also we know when we need help too. Part of being a parent is knowing your limits and using your resources. Through the guidance of our team and a lot of prayer we followed the suggestion to have Julia stay at a place for children who need a little extra.
What was the result? Julia got some much needed help with her sleep so fingers crossed that continues at home. There were no real surprises, more of validating what we knew. In some ways it is nice to know we are doing the right thing, in other ways it would have been nice if we were wrong... we will just say we have our work cut out for us. Beyond the information we also have a few new resources in place to help us along our journey, which should bring some reprieve to everyone in the family in the long term and short term.
So on we push, family of 5 doing what we need to to best provide for each other. It isn't an easy road, but we will do it together and come out on the other end.
Julia was officially discharged today. The past few weeks have been long, between meetings and decisions and keeping everything as normal as possible. So what was the point of her stay? Julia struggles greatly everyday with a few disorders. Ben and I are parents, we love, we care, we protect, but also we know when we need help too. Part of being a parent is knowing your limits and using your resources. Through the guidance of our team and a lot of prayer we followed the suggestion to have Julia stay at a place for children who need a little extra.
What was the result? Julia got some much needed help with her sleep so fingers crossed that continues at home. There were no real surprises, more of validating what we knew. In some ways it is nice to know we are doing the right thing, in other ways it would have been nice if we were wrong... we will just say we have our work cut out for us. Beyond the information we also have a few new resources in place to help us along our journey, which should bring some reprieve to everyone in the family in the long term and short term.
So on we push, family of 5 doing what we need to to best provide for each other. It isn't an easy road, but we will do it together and come out on the other end.
Wednesday, July 13, 2011
Inner Beauty
http://www.huffingtonpost.com/lisa-bloom/how-to-talk-to-little-gir_b_882510.html?ref=fb&src=sp
I am sharing this link for a great reason. Julia has an amazing core. She is smart, she can sing, dance, story tell, laugh, create, imagine and listen. All of these amazing qualities have nothing to do with how cute she is, and they don't need to. She is beautiful because of how God created her. We as a family are choosing to follow the lead of this article. We ask that as you interact with her you follow suit. If you need ideas feel free to ask! If you know you are going see her have a sentence ready so you don't get stage fright :)
Why is it so important for us to address this? Julia has learned some traits in her earlier years that are defense or survival related. One of those traits are getting what she wants due to her captivating appearance and charm. It is very clear to her team and to us that she has perfected this skill and is quite successful in using it. Inner beauty last a life time, it is built upon, shared with others, respected and crucial to having self respect and confidence.
With everything we are working on with Julia, the end goal is to give her life tools, regardless of what stage she is in. Her foundation is going to be built on knowing she is respected for what she is made of, not how cute she can look posing for a camera.
How do I learn just who I am?
I learn from you who I am.
Within your eyes I see
reflected me.
Within your voice I hear
how you see me
You are the mirror that I look into
and mold the image of myself.
I sense the way you hold me,
and from your touch
I feel my form, my shape.
And if I like what I see in
your eyes,
your voice,
your touch--
My heart responds and reaches out.
Then in its reaching, grows and grows,
until I see myself
as separate.
That sparate self--in turn--
can love you back.
Because you taught me
who I am,
and I am loved.
I am sharing this link for a great reason. Julia has an amazing core. She is smart, she can sing, dance, story tell, laugh, create, imagine and listen. All of these amazing qualities have nothing to do with how cute she is, and they don't need to. She is beautiful because of how God created her. We as a family are choosing to follow the lead of this article. We ask that as you interact with her you follow suit. If you need ideas feel free to ask! If you know you are going see her have a sentence ready so you don't get stage fright :)
Why is it so important for us to address this? Julia has learned some traits in her earlier years that are defense or survival related. One of those traits are getting what she wants due to her captivating appearance and charm. It is very clear to her team and to us that she has perfected this skill and is quite successful in using it. Inner beauty last a life time, it is built upon, shared with others, respected and crucial to having self respect and confidence.
With everything we are working on with Julia, the end goal is to give her life tools, regardless of what stage she is in. Her foundation is going to be built on knowing she is respected for what she is made of, not how cute she can look posing for a camera.
How do I learn just who I am?
I learn from you who I am.
Within your eyes I see
reflected me.
Within your voice I hear
how you see me
You are the mirror that I look into
and mold the image of myself.
I sense the way you hold me,
and from your touch
I feel my form, my shape.
And if I like what I see in
your eyes,
your voice,
your touch--
My heart responds and reaches out.
Then in its reaching, grows and grows,
until I see myself
as separate.
That sparate self--in turn--
can love you back.
Because you taught me
who I am,
and I am loved.
Tuesday, June 7, 2011
the poison defence
A monarch butterfly although stunningly beautiful is also poisonous. It is not born poisonous, but to defend its self from predictors it eats poisonous plants.
My little butterfly also uses forms of defense. She has learned survival tactics from her earlier years and uses then when she gets confused, remembers a part of her past or doesn't get her way. Throughout the next several months we will be coaching this little butterfly how to use positive actions to express herself instead of those she is currently using.
She was not born with poison, and I know she is strong enough to learn to live in love instead! We will make it to the other side of this, and we have huge faith that this butterfly's metamorphosis will not only be inspiring to anyone involved but also bless our family in ways we never would have imagined without her!
My little butterfly also uses forms of defense. She has learned survival tactics from her earlier years and uses then when she gets confused, remembers a part of her past or doesn't get her way. Throughout the next several months we will be coaching this little butterfly how to use positive actions to express herself instead of those she is currently using.
She was not born with poison, and I know she is strong enough to learn to live in love instead! We will make it to the other side of this, and we have huge faith that this butterfly's metamorphosis will not only be inspiring to anyone involved but also bless our family in ways we never would have imagined without her!
Thursday, June 2, 2011
reality is not fun
Moving past something that happened isn't always easy, even for adults. Everyone deals with things differently. For a child who has been endured significant trauma it is that much harder because they don't have the tools to get through it.
For Julia most of her past has been blocked, she starts her memory when she moved in with us with a few fleeting memories before then. She has significant trouble placing people and events because her time line doesnt go that far back in her mind. Through an amazing amount of effort, time, trial and error Julia now feels that our home is her safety. To say this is a huge accomplishment would be such an understatement! She has come so far in her attachment to us and now strongly feels a part of our family, as she should!
Due to Julia's new feeling of safety, she has started to try to figure out her past, because she knows we will keep her safe from it no matter what. This has brought on new situations and challenges. After much thought and debate over how to best help Julia and also our family we have started Julia's Trauma Therapy. It is going to be a long hard road. Unblocking what she has very consciously hidden away in her memory is going to be a hard reality for her, and us. In the end she will have an understanding of what she went through, and the tools to get through the parts that linger with her throughout her life.
The program she is in deals with children with significant trauma. You need to qualify for the program, it is heartbreaking for us that Julia does qualify, but we have faith that she will do great and keep that amazing Julia smile in the end.
We ask you all to keep us in your prayers as we progress through this next step in our lives. We plan to have a great summer, lots of fun, lots of growth and learning and know God and our support team will get us through this, as we have gotten through everything else.
For Julia most of her past has been blocked, she starts her memory when she moved in with us with a few fleeting memories before then. She has significant trouble placing people and events because her time line doesnt go that far back in her mind. Through an amazing amount of effort, time, trial and error Julia now feels that our home is her safety. To say this is a huge accomplishment would be such an understatement! She has come so far in her attachment to us and now strongly feels a part of our family, as she should!
Due to Julia's new feeling of safety, she has started to try to figure out her past, because she knows we will keep her safe from it no matter what. This has brought on new situations and challenges. After much thought and debate over how to best help Julia and also our family we have started Julia's Trauma Therapy. It is going to be a long hard road. Unblocking what she has very consciously hidden away in her memory is going to be a hard reality for her, and us. In the end she will have an understanding of what she went through, and the tools to get through the parts that linger with her throughout her life.
The program she is in deals with children with significant trauma. You need to qualify for the program, it is heartbreaking for us that Julia does qualify, but we have faith that she will do great and keep that amazing Julia smile in the end.
We ask you all to keep us in your prayers as we progress through this next step in our lives. We plan to have a great summer, lots of fun, lots of growth and learning and know God and our support team will get us through this, as we have gotten through everything else.
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