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" :)
Wednesday, December 7, 2011
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.
Sunday, May 8, 2011
Today is a walking day
Several of you have heard me say this lately. Everyone has days where no matter how hard they try they cant seem to get out of their own way. These are walking days. Since Julia has no brakes some of her more clumsy moments become dangerous. Every kid needs to fall in order to know how not to fall, and i am ok with bumps and bruises to an extent.
Julia has days that no matter how hard she tries she can't keep herself from falling, bumping into things, breaking things, walking into things etc. Part of Julia's complexity is that no matter how focused she is and how hard she tries if there is too much movement she is going to end up on the ground.
Keeping her walking for the day at least decreases the force of impact when something goes wrong. It can sometimes reset her brain to have a calmer day, with minimal injury. Unfortunately Julia does not learn from her accidents, through no fault of her own, her brain just struggles to save the information of how not to do it next time. No mother likes to see her child fall, or get hurt. But every child needs to learn. One of my other charming children failed to believe me that if you bounce on a tree branch that is weak it will snap. As sad as it was to see her little banged up nose, I know she learned that tree branches can break now.
Julia can fall on the same root in the woods every day for weeks and still not prepare herself better for the next time she passes over the root. So I have to be her preparation. She still needs to live life and figure everything out on her own, it is just on a smaller capacity than most children her age.
Running days do show up, and they are great when they happen but for now I have to make sure my little butterfly's wings don't get to tattered during flight.
Julia has days that no matter how hard she tries she can't keep herself from falling, bumping into things, breaking things, walking into things etc. Part of Julia's complexity is that no matter how focused she is and how hard she tries if there is too much movement she is going to end up on the ground.
Keeping her walking for the day at least decreases the force of impact when something goes wrong. It can sometimes reset her brain to have a calmer day, with minimal injury. Unfortunately Julia does not learn from her accidents, through no fault of her own, her brain just struggles to save the information of how not to do it next time. No mother likes to see her child fall, or get hurt. But every child needs to learn. One of my other charming children failed to believe me that if you bounce on a tree branch that is weak it will snap. As sad as it was to see her little banged up nose, I know she learned that tree branches can break now.
Julia can fall on the same root in the woods every day for weeks and still not prepare herself better for the next time she passes over the root. So I have to be her preparation. She still needs to live life and figure everything out on her own, it is just on a smaller capacity than most children her age.
Running days do show up, and they are great when they happen but for now I have to make sure my little butterfly's wings don't get to tattered during flight.
Saturday, April 16, 2011
Seed, roots, stem, bud, flower
This is what I have been hearing about for weeks! Julia's class has been learning how to make the world a more beautiful place.
They have painted, drawn, colored and even planted flowers of every sort (even ones i did not know existed!). I had the privilege of going to Julia's open house at school with her this past week. It was wonderful to see the confidence and passion behind everything she had made in her classroom. She has an amazing memory about Van Gogh, Picasso, what all the flowers were named, the steps in growing a plant, the observations of growing her lily pad, explaining her lily pad journal, and showing us the special flower she had planted and was caring for.
In many ways this is how we approach Julia. For a simple explanation we got Julia as a seed. If you don't have solid roots your stem will not be able to hold itself or its flower. We have now, just in the past few months, gotten some roots going for Julia. Most 4 year olds have their strong stem by now. We are not quite there yet, but the roots are so very important. They are unseen by those just looking for the flower. Yet without the roots the flower once bloomed would topple over under the pressures of it's environmental elements. Julia's roots are fragile right now, they are not ready to be tested by life elements, and so she still requires the strong support of those around her, more so than most children of her age. In the same way however Julia has begun see the value of roots and the patience it takes to know the steps it takes to make a flower. So to we have begun to see the value of her roots beginning to take hold of the bedrock that will make her stand strong in life.
Today we planted Julia's flowers in our planter outside our door, so everyone who comes to our door knows we are starting to grow, we are fragile but with care and nurturing we plan to become something amazing :)
They have painted, drawn, colored and even planted flowers of every sort (even ones i did not know existed!). I had the privilege of going to Julia's open house at school with her this past week. It was wonderful to see the confidence and passion behind everything she had made in her classroom. She has an amazing memory about Van Gogh, Picasso, what all the flowers were named, the steps in growing a plant, the observations of growing her lily pad, explaining her lily pad journal, and showing us the special flower she had planted and was caring for.
In many ways this is how we approach Julia. For a simple explanation we got Julia as a seed. If you don't have solid roots your stem will not be able to hold itself or its flower. We have now, just in the past few months, gotten some roots going for Julia. Most 4 year olds have their strong stem by now. We are not quite there yet, but the roots are so very important. They are unseen by those just looking for the flower. Yet without the roots the flower once bloomed would topple over under the pressures of it's environmental elements. Julia's roots are fragile right now, they are not ready to be tested by life elements, and so she still requires the strong support of those around her, more so than most children of her age. In the same way however Julia has begun see the value of roots and the patience it takes to know the steps it takes to make a flower. So to we have begun to see the value of her roots beginning to take hold of the bedrock that will make her stand strong in life.
Today we planted Julia's flowers in our planter outside our door, so everyone who comes to our door knows we are starting to grow, we are fragile but with care and nurturing we plan to become something amazing :)
Saturday, March 26, 2011
Teaching Attachment
Teaching attachment is just as easy at teaching trust. You can't. It is something you have to feel for yourself before you know you have it. Most of us have attachment at a very young age, from birth really. But what if you don't, what if you don't understand what it means to be attached to someone? Attachment can not be forced and it certainly can not be fake. Attachment works both ways. For many parents attachment and bond starts to happen with a first ultrasound or a first kick of a baby. Some feel it the first time they hold their baby after waiting ten long months. Children then know attachment from day one and have it as an instinct. But what if you are missing that time?
Over the past 18 months we have had the amazing yet heartbreaking chance to see Julia sort our her attachment. It is interesting to see the turning points and what makes attachment real for her. Over time we have learned tips and techniques on how to deal with babysitters, doctors, new family, strangers, friends etc. A child with out stranger danger needs coaching on how to judge where attachment should be and when there should be none.
We have come so far, and I say WE with very strong meaning. I love Julia as a child of God, as I always have. I had the privilege for the first time, a few weeks ago, to see her walk around the corner at school and smile just because I saw her. It was like the first time a biological mother holds her child. I know it seems strange that it took 18 months to feel that, but most mothers have at least 10 months to prepare. Julia has now taken to asking me where I am going, when I will be back etc... even if my trip is to go pee for roughly 7 seconds in the bathroom. Together Julia and I have made such huge strides in our attachment over the past several weeks. Although we still have a long way to go, the foundation is now laid. I believe in celebrating when it is time. Julia has started her road to attachment, and I am glad to be part of it.
Monday, March 14, 2011
Building Confidence
One of the biggest things Ben and I have to deal with with our day to day care for Julia is deciding what is important, what is not important and what is in the middle. It has been trial and error for the most part, which is pretty frustrating for everyone. What it comes down to is understanding the meaning behind most actions.
Julia is exploring life right now. It is very cool to see what she finds amazing, what she doesn't (tomatoes :P). One of my most memorable adventures with Julia to date was the trip up Blue Hills. She has no idea she is so small, and you could tell with the determined smile she had on her face right to the top!
What Ben and I keep in mind with everything Julia does is "Is it safe" which is what we instill in her. We tell her with everything she wants to try to make sure she is staying safe. Part of our struggle is that she can't do all things a 4 year old could do, because developmentally she just isn't there. It is hard holding her back from some things, but it is for her safety and confidence we do it.
Confidence is so important to a child in the developmental years. I believe it is the foundation of their lives to know they can accomplish what they set out to do. In the same way you wouldn't let your new to walking 12 month old trying to ride a 2 wheel bike with some 5 year olds, so we have to make sure Julia is being set up for success and safety with everything she does. With all the different stages of development she is in currently, each one comes with obstacles, and new goals. Julia is just the girl for the job and I have full confidence she continue to do something great with each situation given to her, irregardless of her limitations.
When I was younger my dad use to play a song ... in some ways I feel like it is Julia's theme song...
Julia is exploring life right now. It is very cool to see what she finds amazing, what she doesn't (tomatoes :P). One of my most memorable adventures with Julia to date was the trip up Blue Hills. She has no idea she is so small, and you could tell with the determined smile she had on her face right to the top!
What Ben and I keep in mind with everything Julia does is "Is it safe" which is what we instill in her. We tell her with everything she wants to try to make sure she is staying safe. Part of our struggle is that she can't do all things a 4 year old could do, because developmentally she just isn't there. It is hard holding her back from some things, but it is for her safety and confidence we do it.
Confidence is so important to a child in the developmental years. I believe it is the foundation of their lives to know they can accomplish what they set out to do. In the same way you wouldn't let your new to walking 12 month old trying to ride a 2 wheel bike with some 5 year olds, so we have to make sure Julia is being set up for success and safety with everything she does. With all the different stages of development she is in currently, each one comes with obstacles, and new goals. Julia is just the girl for the job and I have full confidence she continue to do something great with each situation given to her, irregardless of her limitations.
When I was younger my dad use to play a song ... in some ways I feel like it is Julia's theme song...
Eight years old with a floursack cape Tied all around his neck He climbed up on the garage He's figurin' what the heck Well, he screwed up his courage up so tight That the whole thing come unwound He got a runnin' start and bless his heart He's headed for the ground Well (yes) he's one of those who knows that life Is just a leap of faith Spread your arms and hold your breath And always trust your cape
Now he's all grown up with a floursack cape Tied all around his dreams And he's full of spit and vinegar And he's bustin' at the seams Well, he licked his finger and he checked the wind It's gonna be do or die He wasn't scared of nothin' boys He was pretty sure he could fly
Well (yes) he's one of those who knows that life Is just a leap of faith Spread your arms and hold your breath And always trust your cape Now he's old and gray with a floursack cape Tied all around his head He's still jumpin' off the garage And will be till he's dead All these years the people said He was actin' like a kid He did not know he could not fly So he did
Well (yes) he's one of those who knows that life Is just a leap of faith Spread your arms and hold your breath And always trust your cape Well (yes) he's one of those who knows that life Is just a leap of faith Spread your arms and hold your breath And always trust your cape
Friday, March 11, 2011
Catching up
The journey so far has been quite a whirl wind of things we never expected. To start off I was quite sure I was set with two children, after being pregnant in 2003,2004,2005 and 2006 I was all set with the being pregnant game. So I had my tubes tied. But God is funny. So in July of 2009 Julia entered our home. Looking back over the past few years we have now shared, 2 of her birthdays, 2 Christmases, 2 years of school, several court hearings, doctors visits, and countless hours discussing what the best plan would be it has been an amazing transformation. Bringing Julia into our home was a delicate process, mostly because we already had our two children, who now had to share not only their toys and their home, but also their parents. It instantly became complicated splitting the time into three instead of two.
Julia came to us malnourished, unclean, and lacking what every child requires in most every aspect. We didn't have time to dwell on heart break or the past so we submerged her in what it was like to be a kid. She flourished right away with toys , books, peer friendship, love, attention, appropriate doctors visits etc. As time went on it quickly became exhausting trying to keep up with everything Jules had missed as well as give adequate attention to Ella and Caleb. Things started popping up with Julia that we knew we could not handle alone, but were not really sure were to go. Luckily my children have an amazing pediatrician, who referred us to a psych at Children's Hospital Boston. After several heart breaking appointments week after week we finally started to get some answers. Julia suffers from Post Traumatic Stress Disorder and Reactive Attachment Disorder at the very least. We were next referred to the Intensive Care Coordination of Bristol County. These people are nothing short of angels on earth. They are people, who take the time each week to come into our home and help us help not only Julia, but every member of our home. Every week a Case manager comes in to get an update on how things are going, a Family Planner comes each week to help with outings, errand planning, game plans, what works, what doesn't and what next weeks plan should be, and finally an In Home Therapist who each week comes in and observes our family interactions discuss with us in detail Julia's well being. Every month we have a care plan meeting involving not only Ben and myself but also the members of our Trauma team and my best friend, who has been an integral part of Julia's care and wellbeing since she came into our home. We come up with goals, struggles, triumphs and concerns to see how as a team we can help Julia and our family flourish.
On top of the three meetings each week, we now have three children in three different schools and three different times. Julia was accepted into the SPED program in North Attleboro on account of her need for peer socialization and development. She has been in the program since January and has done an amazing job adjusting. I had the privilege of watching her play on the playground with her friends a few days ago and it brought joy to my heart to see her smile her Julia smile while sliding down a slide with a friend. Every week she brings home her projects and stories of what she has accomplished in her class. Her teacher Mrs. M is a gifted teacher for amazing and gifted children .
All that being said, not every day is a breeze, in fact most are exhausting. As most of you know having young children is exhausting in itself, and having three only intensifies that. Having a child with disabilities is an entirely different ball game. Julia has not only the heart and passion of a 4 year old, but the experience of an 18 year old, and some behavior development of a 12 month old. Because her trauma was "pre-verbal" it adds a complexity that is complicated at best. Everyday adds a new challenge not only for us and Julia, but also for Ella, Caleb. Things that had long since been a memory to me have been brought back, and things I didn't think I would have to deal with until teenager years have been forced upon us. For the respect of Julia and those who were part of her past I will be candid to not go into detail on specifics but know that she is affected by what her earlier years brought to her life, in ways that most of us could not imagine.
Through Julia's Intensive Care team and Ben and myself we have come up with a specific behavioral and safety plan for Julia, taking everything into account that we have learned over the past year and a half. We ask that you respect our decision to follow that plan. Julia has come so far in a year and a half and we have faith she will continue to flourish through the love and support of her friends and family.
As for family and friends we can not say enough. Those of you who have been there for us have been nothing short of a miracle. With no obligation other than taking care of one of God's children, we will never be able to express our gratitude to you for being a part of this journey with us. Know you hold a special place in our hearts.
I think Julia put it best this past Christmas, when I suggested we put her on top of our tree as our Angel, she politely declined... her reply was "I can't go on top of the tree, because I am part of the family I stay down here".
Julia came to us malnourished, unclean, and lacking what every child requires in most every aspect. We didn't have time to dwell on heart break or the past so we submerged her in what it was like to be a kid. She flourished right away with toys , books, peer friendship, love, attention, appropriate doctors visits etc. As time went on it quickly became exhausting trying to keep up with everything Jules had missed as well as give adequate attention to Ella and Caleb. Things started popping up with Julia that we knew we could not handle alone, but were not really sure were to go. Luckily my children have an amazing pediatrician, who referred us to a psych at Children's Hospital Boston. After several heart breaking appointments week after week we finally started to get some answers. Julia suffers from Post Traumatic Stress Disorder and Reactive Attachment Disorder at the very least. We were next referred to the Intensive Care Coordination of Bristol County. These people are nothing short of angels on earth. They are people, who take the time each week to come into our home and help us help not only Julia, but every member of our home. Every week a Case manager comes in to get an update on how things are going, a Family Planner comes each week to help with outings, errand planning, game plans, what works, what doesn't and what next weeks plan should be, and finally an In Home Therapist who each week comes in and observes our family interactions discuss with us in detail Julia's well being. Every month we have a care plan meeting involving not only Ben and myself but also the members of our Trauma team and my best friend, who has been an integral part of Julia's care and wellbeing since she came into our home. We come up with goals, struggles, triumphs and concerns to see how as a team we can help Julia and our family flourish.
On top of the three meetings each week, we now have three children in three different schools and three different times. Julia was accepted into the SPED program in North Attleboro on account of her need for peer socialization and development. She has been in the program since January and has done an amazing job adjusting. I had the privilege of watching her play on the playground with her friends a few days ago and it brought joy to my heart to see her smile her Julia smile while sliding down a slide with a friend. Every week she brings home her projects and stories of what she has accomplished in her class. Her teacher Mrs. M is a gifted teacher for amazing and gifted children .
All that being said, not every day is a breeze, in fact most are exhausting. As most of you know having young children is exhausting in itself, and having three only intensifies that. Having a child with disabilities is an entirely different ball game. Julia has not only the heart and passion of a 4 year old, but the experience of an 18 year old, and some behavior development of a 12 month old. Because her trauma was "pre-verbal" it adds a complexity that is complicated at best. Everyday adds a new challenge not only for us and Julia, but also for Ella, Caleb. Things that had long since been a memory to me have been brought back, and things I didn't think I would have to deal with until teenager years have been forced upon us. For the respect of Julia and those who were part of her past I will be candid to not go into detail on specifics but know that she is affected by what her earlier years brought to her life, in ways that most of us could not imagine.
Through Julia's Intensive Care team and Ben and myself we have come up with a specific behavioral and safety plan for Julia, taking everything into account that we have learned over the past year and a half. We ask that you respect our decision to follow that plan. Julia has come so far in a year and a half and we have faith she will continue to flourish through the love and support of her friends and family.
As for family and friends we can not say enough. Those of you who have been there for us have been nothing short of a miracle. With no obligation other than taking care of one of God's children, we will never be able to express our gratitude to you for being a part of this journey with us. Know you hold a special place in our hearts.
I think Julia put it best this past Christmas, when I suggested we put her on top of our tree as our Angel, she politely declined... her reply was "I can't go on top of the tree, because I am part of the family I stay down here".
Welcome
If you have come to this site it is because you have been touched somehow by Julia's Journey through life. Ben and I have decided that the best way to answer all your questions and keep those interested in the loop would be through a blog. We try to keep you all as informed as possible, but with two other children and life in general it has become overwhelming to keep up. I will be giving some back story soon, and once that is complete I will be updating this blog to share Julia's amazing accomplishments. We will also be sharing the struggles that Julia encounters in her day to day life. She came into our life as quickly as a butterfly comes through your yard, in the same way a butterfly can be hurt if it's wings have been touched too much, so Julia has been affected by the hurt to her beautiful wings. She is however an amazing creature from God and has never stopped trying to fly up to the prettiest flower she can find. So we welcome you to watch as this little butterfly makes her amazing journey.
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