#Autism: Heartbreaking regression

Please be aware that I’m venting in this post and use some colorful language in the process.  Sorry Mom…

I had our brief IEP meeting with Gavin’s school today.  Man….the hits just keep coming.  Part of Gavin’s MFE was to repeat his intelligence testing.  This is important for several reasons but for us,  right now,  it gives us an idea of where he is now,  compared to where he was.

Unfortunately,  Gavin’s score has dropped across the board. 

I’m not looking at the paper work right now but one category he went from a 109 previously,  to a current score of 94. So while he has dropped across the board,  some aren’t as bad as others.

The major concern right now was his score on the Composite Memory Index.  Previously he scored 116, which I believe is above average.  Currently he scored a 74. While I’m kinda freaking out right now, it’s not unexpected.  We known that Gavin is cognitively regressing for some time now. 

We just didn’t know how bad.

What this does is tell us that we aren’t imagining anything.  It’s really hard to actually know this for sure now and to literally see how much he has lost. 

Right now I’m screaming fuck you Autism…in my head.  Regression is a bitch and it’s heartbreaking to watch this happen. Unless you have experienced this first hand,  it’s impossible to understand.  The closest thing would be Alzheimer’s and that’s actually a pretty good analogy.

My fears are becoming a reality.  We are continuing to lose more and more of Gavin. The truly scary part is that we don’t know when or if this regression will ever stop.  We don’t know how far this will go.  We have already been told that he could eventually need a wheelchair and even worse,  assistance to breath.

This is just crappy.  No..it’s shitty,  fucking shitty.

I don’t even know what to think right now and Lizze is still at the hospital with Gavin.  Sometimes I really hate our lives.  I so desperately wish I could make all of this better for my family. 

**Thanks for reading**

       -Lost and Tired

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@tvjames

Read this yesterday while sitting in a meeting and almost lost it. Thanks for the honesty in your posts. Every one of them reminds me to pray for you and your family. A lot is being asked of you and you do it with grace and integrity and love. Persevere!

Perplexingminds

I am so sorry to hear. I can only pray that you and your family stay strong during this difficult time. I know no amount of words can fix what is going on, but know that you have external support even though we cannot always be there physically.

Much love and positive thoughts being sent your way.

Lost_and_Tired

That you. Also, thank you for the awesome post 🙂

Perplexingminds

you are most welcome, your blog is absolutely amazing and I can't thank you enough for it!

ashley

It's amazing how much of a blessing our children are but the autism nightmare continually haunts us too. There might not be much to say to ease this heart break, but I'm sorry and thank you for your honesty.

Lost_and_Tired

Thanks you

Maria

Sorry to hear this…. does not sound like garden variety autism though if they are predicting wheelchairs and breathing assistance in the future. Every time we do a MFE I fight against having any IQ assessments done because he usually has such discrepant results and its impossible to get a good read on actual IQ as a result. I rely on acheivement tests instead. School hates me as a result. On a positive note sometimes kids on the spectrum regress just before they make a leap in learning… I am praying this is the case here.

Lost_and_Tired

Your correct. Not a garden variety Autism at all. It\’s not common for kids to regress into Autism. Gavin’s switch flipped when he was almost 4 years old. He developed typically until then.

He has never really stopped regressing since. The Cleveland Clinic says he\’s also dealing with an \”exotic degenerative neurological disease\”. That basically means they have not seen anything like this before or at least have no idea what it is.

He has lost movement in his tongue and all his reflexes in his lower extremities.

I totally agree about the IQ testing but in this case we needed to have an idea of where we are now, compared to where he was then.

The test results are basically confirming what we have been seeing for the past few years. Thank you for your thoughts. I really appreciate it 🙂

PATSY NAPE

Heartbreaking. God I truly wish it would all disappear. No damm Autism or other diseases that effect our loves ones. Slowly taking them away from us. Helpless. Crying now.

Lost_and_Tired

Amen to that.

Hi Rob,
ive been keeping up with your posts, and this one made me cry.
Im so sorry for this. Regression is indeed heartbreaking and frustrating. it feels like our kids are being stolen from us right before our eyes.
You are brave, and know that many of us, myself included are praying for Gavin and your family.
God, i wish there was a magic wand to take this crap away!
hugs to you,
Kari

Thank you very much. Not many people understand what it\’s like to watch your child regress like this.

Thank you for your kind and supportive words. I really appreciate it. 🙂

Roni

Hey man,

I know i can tell you that the test might not be any indication. heck, most teens & pre-teens might seem dazed & confused and that's without the added ingredient of Autism.
but I guess this is not one thing you want to hear now.
But know this: You are not alone, and you have a lot of people praying and hoping/wishing the best for you and your family.

if you wish to talk or vent, you have my e-mail & I can give you my number for contact also.

Lost_and_Tired

Thanks. The problem is that I know the test is accurate. Whether is 100% with the numbers is another story. The results confirm what we have been seeing for many years.

The only thing we don\’t know for sure is what is causing this.
I really appreciate your support. Thank you

Denise S

hugs going out to you regression SUCKS but also keep in mind it may not be as bad as it seems testing kiddos on the spectrum can go great 1 minute then you try and hand them the same test another time it is totally different! Keeping you all in our prayers

Lost_and_Tired

Thank you… 🙂

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