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.
Sunday, December 16, 2012
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.
Subscribe to:
Posts (Atom)