I've written most of our family an update on Brady's appointment but will also share here too...sorry if it is a bit redundant for some of you. :) Zac and I met this morning with the dr. and went over Brady's test results...lots of graphs and charts that compare his *skills* with other kids his age. His verbal skills (as far a what he understands conversationally and his vocabulary) were pretty much through the roof. Then when it came to math skills or anything that required any type of attention span was extremely poor. His coordination wasn't good...he couldn't complete tasks like standing on one leg or walking with one foot in front of the other....he couldn't really wipe his nose by himself...stuff like that. Also his social skills and the chart that shows his levels of *frustration* and anxiety were also through the roof...a normal kids would be in the 80 to 100 range and Brady was past 120. So, all that to say that Brady has been officially diagnosed with Asbergers Syndrome, he also tested very high for ADHD (kind of goes with Asbergers) and he will also need speech therapy as he studders VERY badly when he gets excited at all. My mind has been whirling all day...I knew this would be the outcome but there's just something about talking to a professional and looking at charts and graphs and all that jazz - it was just so real. Basically Brady has no type of sensor on social skills, he has no self control. He immediately does what comes to mind and Zac and I have had to closely moniter every move he makes for years now...it is exhausting. We were advised to continue some type of therapy for our family as having a child with Aspergers puts a huge strain on your family dynamics. Things have been this way for awhile...simple things like going to a restaurant or over to someone's house for dinner have basically been out of the question for us for years. The mall, church, VBS, play dates...anything....has presented a huge challenge. So...now that we have a diagnosis we are hopeful that we can now find someone to help us with tools - Brady doesn't respond to discipline or correction like an average child would....he doesn't have empathy for others....he is obsessive when his life changes in any way. Right now with the baby coming, well...the Dr. said that we can just expect him to be very obsessive and volatile.He senses that something is happening and it's upsetting to him. Dr. McGee said that he knows of no good programs in this area for children with Asbergers and that no schools in Hamilton County cater to this type of disability. I'm realizing more and more that I'm not going to be able to teach him at home...I will if we stay here...but this is one of the reasons why we long to move to an area where there will be more resources for our Brady Bunches. We have an overflowing amount of love for him and want to be the best parents we can be...at the same time there is a part of us that feels defeated and totally exhausted with the daily task of just living with him. I know that sounds harsh...but it is our reality and it's best to face the emotions instead of trying to ignore them or cover them up. I wish I was handling this whole situation with a little more grace and dignity but right now it just hurts. It's hard realizing that expectations you have for your life...good expectations...aren't necessarily the ones that God has for you.
Apr 14, 2011
Diagnosis
I've written most of our family an update on Brady's appointment but will also share here too...sorry if it is a bit redundant for some of you. :) Zac and I met this morning with the dr. and went over Brady's test results...lots of graphs and charts that compare his *skills* with other kids his age. His verbal skills (as far a what he understands conversationally and his vocabulary) were pretty much through the roof. Then when it came to math skills or anything that required any type of attention span was extremely poor. His coordination wasn't good...he couldn't complete tasks like standing on one leg or walking with one foot in front of the other....he couldn't really wipe his nose by himself...stuff like that. Also his social skills and the chart that shows his levels of *frustration* and anxiety were also through the roof...a normal kids would be in the 80 to 100 range and Brady was past 120. So, all that to say that Brady has been officially diagnosed with Asbergers Syndrome, he also tested very high for ADHD (kind of goes with Asbergers) and he will also need speech therapy as he studders VERY badly when he gets excited at all. My mind has been whirling all day...I knew this would be the outcome but there's just something about talking to a professional and looking at charts and graphs and all that jazz - it was just so real. Basically Brady has no type of sensor on social skills, he has no self control. He immediately does what comes to mind and Zac and I have had to closely moniter every move he makes for years now...it is exhausting. We were advised to continue some type of therapy for our family as having a child with Aspergers puts a huge strain on your family dynamics. Things have been this way for awhile...simple things like going to a restaurant or over to someone's house for dinner have basically been out of the question for us for years. The mall, church, VBS, play dates...anything....has presented a huge challenge. So...now that we have a diagnosis we are hopeful that we can now find someone to help us with tools - Brady doesn't respond to discipline or correction like an average child would....he doesn't have empathy for others....he is obsessive when his life changes in any way. Right now with the baby coming, well...the Dr. said that we can just expect him to be very obsessive and volatile.He senses that something is happening and it's upsetting to him. Dr. McGee said that he knows of no good programs in this area for children with Asbergers and that no schools in Hamilton County cater to this type of disability. I'm realizing more and more that I'm not going to be able to teach him at home...I will if we stay here...but this is one of the reasons why we long to move to an area where there will be more resources for our Brady Bunches. We have an overflowing amount of love for him and want to be the best parents we can be...at the same time there is a part of us that feels defeated and totally exhausted with the daily task of just living with him. I know that sounds harsh...but it is our reality and it's best to face the emotions instead of trying to ignore them or cover them up. I wish I was handling this whole situation with a little more grace and dignity but right now it just hurts. It's hard realizing that expectations you have for your life...good expectations...aren't necessarily the ones that God has for you.
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6 comments:
OUr little boy (almost 4) recently dx with HFA/Aspergers too so know exactly where you are at
Your words" We have an overflowing amount of love for him and want to be the best parents we can be...at the same time there is a part of us that feels defeated and totally exhausted with the daily task of just living with him." could have come straight out of my mouth.
Hang in there. Love him. Look after yourself first and foremost as cant do it without patience and energy (both lacking most of most days around here). Get support. Say yes to all offers of help (eg someone to make a meal or take the kids for a while to give you a break etc).
Its an endurance race and there are good days and not so good days - but EVERY day is a brand new day.
Focus on strengths and progress (however small). There will be set backs here and there but there will also be good days and good moments and progress.
Keep us posted. And feel free to email or comment on my blog if want to ask a questions (not that I have all the answers but may have read something possibly or can make a suggestion of where to find the info etc) or if you ever just need to vent
hillme71@gmail.com or www.blogofmichele.blogspot.com
I have found it is really only other parents of kids on the spectrum that really get it - and even then many of us are on different journeys with severity of child or treatment options chosen or whatever but still it is great support
I joined a facebook group called Aspergers Connect which has been invaluable and a local ASD support group that meets once a month (only been once) and have learnt so much from other ASD parents (and Google!!!)
Hang in there. Just take it a day at a time.
Michele
I will be praying for you guys and for your little man. I know this has to be hard on you all esp with him being the oldest and you getting ready to bring a new one into the household. But, we both know how BIG God is....he sees you and Zac being obedient and good parents. He will "continue" to provide for your family. I am very proud of you both, you make a wonderful team and your family is so blessed. I think of you all often. Always praying for your whole clan. Can't wait to see baby Finn. :) >>>any day now...woo hoo!!
Alyssa, been reading your posts and thinking so much about you and your family right now. I know I don't fully understand what you are going through but I do know that your emotions and exhaustion and days of feeling like this is all just too much are completely valid. I don't know why God has asked you and Zac to go through this with Brady but I do know that Brady couldn't have better parents when it comes to helping him through life. I really do pray that you can move and find some good help for him and that one day he will be doing so amazingly well you can mainstream him etc...I also will pray that you can find a behaviorist who can come alongside you and show you how to deal and cope etc...You guys are amazing and I know that life is totally insane right now with the new baby coming and the pain you are in. I'll be praying for a move, for this birth, for Brady and for you to be able to see the light at the end of the tunnel as you mourn what expectaions you had in life and embrace the ones that God has given you. You are stronger than you realize and an amazing mother and woman of God.
Hey girl, I just want to let you know that I am praying for you. I can only imagine the kind of loss that you are feeling. Please know that it is ok for you have all the feelings that you are having. You need to go through the grieving process. I will be praying that you guys are able to get to a place that has amazing resources for Brady. My sister is just beginning the process of diagnosis for one of her twins. So I have a small glimpse of what you are dealing with. Don't get me wrong I am not trying to say that I know exactly how you feel but I want you to know that I realize it is a big deal. Hope baby Finn comes out soon and without complications. Love ya.
p.s. this was Sarah not Shawn. lol
Some resources that may be helpful are books by Temple Grandin, including "Thinking in Pictures", "The Way I See It".... also the movie Temple Grandin made in 2010. Be encouraged and know there is help and inspiration as a mom, and a wonderful future for your son. God bless.
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