The severity of behavior issues among individuals with CHARGE was a major topic at this weekend's conference. Many are diagnosed with Autism, OCD, Tourettes, and the list goes on and on. Yikes, yikes, yikes...to put it mildly. This was a very scary subject for the parents of young children. Few of us realized how significant of a problem this is for those with CHARGE.
So on top of all of the medical, physical, sensory and cognitive issues, we have behavior issues to look forward to? Come on, what isn't involved in this darn syndrome??? It is truly, truly overwhelming.
I think the behavior aspect scares me more than anything else. There are never concrete answers (i.e. a surgery) to "fix" the problem, and society is very judgemental of children and adults who don't act "appropriately." Additionally, I am frustrated because I don't feel I currently have the resources to do all that I should be doing to try and overcome some barriers in his communication development. I don't want to miss an opportunity for Maxwell. (Yes, I know we are doing tons, but there is so much more.)
So tonight Oprah just happened to be doing a feature on "Autism Awareness." It is truly amazing what these individuals and their families endure on a daily basis. And it blows my mind to think that could be our reality in the future.
I am trying to not stress or get too discouraged, but the conference was definitely a wake up call that our future will certainly have major challenges. We may get past most of the medical issues...but so much more remains ahead of us.
8 comments:
I'm sorry Amy :(. I know when Alex was Max's age I did not want to know too much of my future & stayed away from too much information that scared me. Now, we are dealing with a lot of behavior stuff. It's heart breaking and exhausting but at the same time I just love this little boy so much I'd do anything for him.
My advice as a BTDT mom is to sign, use icons, any sort of communication humanly possible with Max. I wish we had because it wasn't until Alex got so frustrated because of his lack of communication that the behaviors appeared.
(((HUGS)))
yeah theres allways bridges ahead of us and points wich we will stumble but hey thats chargeland love u heaps
Hi Amy and Max,
Hope Little Buddy is doing better today. I saw Oprah. Kuddos to her for starting to dive into these scary and hard to understand subjects. Now we need to get a bug in her ear about CHARGE. Let's get you and Max or someone on Oprah. We need to make others aware! So?
Blessing for a good weekend,
Shannon in Austin
Yes it is scarey thinking about the future but when we have little ones like this its all we can do is think about it. Then I tell myself time to slow down and take it one day at a time.
Hang in there hun,
Crystal and Eva
Amy- I also watched Oprah yesterday, I thought it was so great that they did a show like this hopefully they will do more. Anyways I know how behavior stuff is my kiddos don't have charge but sure do have other issues and behavior things. I think one of the hardest is being judged by other people who don't even know the issues. It is such a hard battle but I am glad you got lots of info on it at the conference, maybe you could share some of the information you got about behavior issues with me. I also just wanted to let you know I think you are doing a super job and Max is so lucky to have such a great mom. Samantha
Amy, I know the behavior stuff is scary. I think about that often too. But, try not to get ahead of yourself too much. Our little guys have an advantage being so young yet. I feel like we have a lot of people on our side helping parents like us learn about behavior issues in CHARGE, which is something that parents 20, 10 or even 5 years ago didn't have. And I saw a lot of older CHARGErs at the conference who really impressed me and I just hope that Luke can be as well-adjusted as they are. All you can do is your best and then hope and pray for the brightest future possible.
Shelly
We went through a severe behaviour stage that began around age 4 with Kennedy. It was the hardest thing we dealt with when it came to CHARGE. With meds, lots of inventive ideas, and behavioural techniques though, she has overcome that as well. Moriah makes an excellent point about the communication - I think that is 90% of the key. If I can help at all with anything in the future, let me know...
Amy-
I hope Max is feeling better soon. I hadn't read his blog in awhile because we were out of town. So sorry to hear of the hospital stay, Tommy doesn't like his hospital stays either. I pray for your continued strength, patience and energy. Any future issues wether behavioral or physical will be faced on those days as we live our life based hour to hour and sometimes minute by minute. Many thoughts heading your way! -Sandi and Tommy
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