Tuesday, June 2, 2009

The R word


It is a word you never want to hear. Especially, if you have a child on the spectrum.

We have been very lucky the past three years. Well, it has not all been luck. We have worked our behinds off in helping our son and in return he has responded by doing really well. He has worked harder than both Jay and I combined. We have seen progress that many, many kids on the spectrum don't achieve. We have been making gains for three years and we know just how amazing that is.

A few months ago (three to be exact), something changed.

It has been confirmed to me today that Carson's sensory processing is not what it was six months ago. This is not good news. This is in all reality the R word.

I knew that Carson was having a tough time regulating and his spiking episodes were more frequent. This means that Carson has been pretty unhappy and difficult to handle. School has been affected. Home life has been affected. This has occurred even with twice weekly OT and PT sessions. This occurred even with sensory activities at home as well.

We have been racking our brains to try to determine why/how this happened. I have written a great deal about sensory processing before. It is so very important for daily living and functioning in society. It is VERY important for success in school.

We are working with all the right professionals on what to do. All our summer plans are being rewritten. More research will be done, changes will be made and Carson will have to work that much harder but I know we/he can get it back.

I still have faith and hope and believe that this disorder is treatable. I know that some don't ever regain what was lost. Some kids regress further. That scares me more than I care to admit.

We love him and accept him just the way he is but I will not give up on him. Jay and I have and will always do whatever we can to give him the greatest opportunity for success. As long as he is happy, we are happy.

The toughest part is -right now, he is not happy.


Anonymous said...

I guess we have to ask God for extra help...Life has so many ups and downs but I refuse to give up...You are such amazing parents.

Journey To Eden said...

So sorry. Please let us know of anything we can to do help. We love you all!