We got the results, somewhat of the genetic study today. They said they feel Chris is more "autistic-like" which is what the developmental pediatrician said when he was first diagnosed with PDD_NOS. He gave the dx only because there was a bunch of little things that were in all the categories but the therapies he wanted Chris to have were the same so it was easier to get the therapy than to explain "autistic like" to someone. He does, however, have one of the worst expressive delays they have every seen. We need to look at a communication board for him. If we don't get him help they think he'll not be able to communicate with others. This I'm ok with.
They felt Matthew has something and they still can't figure it out. They called him the quarky kid with the expressive language delay. They said that he doesn't meet enough of the criteria to give him a dx of autism.
Jon is why I was blindsided. I feel like the worst mother right now to ignore the signs and not see things. He has autism. He meets the criteria for a PDD_NOS diagnosis. He doesn't make good eye contact; we thought it was ADHD. He likes to play by himself. I told people it was him wanting privacy in a house filled with kids. He doesn't like to socialize. Again, I thought it was him being a quiet kid. He has narrow focus in activities. I could go on and on but I can't without crying more. The diagnosis is coming from one of the best doctors in the US; one who is trained in ADOS and ADI and trains others to use the tools.
My heart hurts. I am confused. This isn't fucking fair! I look at my sweet boy and my heart crumbles for him. What does this mean for him and his future?
I need a good loud cry but here I am all by myself with my babies in a hotel in Salem. I am trying to stay strong for them.
6 comments:
Oh honey. Cry it out. And stop blaming yourself. We want to see the best in our kids. I explained so much away with my middle son... and then kicked myself for it later. But, really, we can't go back and do anything different, so just go forward.
I am sending you hugs and hope you are getting some from your sweet boys. I found you through "Things I can't say." I don't know the pain you are going through but as a mom and former special ed teacher I can guess. Kiss and love on your boys. They were given to you because you are strong and will be the mom they need.
Jennifer
I totally agree with Shell. Cry it out and then move forward for him. I also explained away a lot of things for D too. Like Shell said, we want to see the best. So many prayers for you. HUGS!
Sending you lots of love.I have really enjoyed reading your blog about your study.As I said before we are going in Sep and I think we are going to be hearing some things we don't want to hear.In the end I think it will be great cause then we can start getting them the support and love they need.We are struggling here with insurance too.I am trying to get grants to help us.I was given a website called www.ask.com or .org
I hope this will help you.We were denied Medicaid,SSI,Special Kids needs.You name it I tried.Our study group in Houston has offered to write a letter to our insurance maybe you might ask Boston to do the same thing.
I am so sorry I am so late getting to this. I am sitting here stunned and bawling for you. I know how much it stings, how much it hurts, but now that you know? Jon will BLOOM. HE WILL BLOOM because you know EXACTLY what to do for him. How can any of them NOT succeed with such a powerful advocate, tremendous mother?
And? If anyone of those assholes from yours or his families have anything nasty to say to you about all this? I am so kicking their asses when we get together in the near future. That is a promise.
DO NOT let them get you down. Seriously. Just move in here with me. I can move GC to the guest bedroom and for our boys every night will be a party. ;)
Much love to you. Thank you for being my friend through it all.
XOXOXOXOXOXOXOXO
Kerrigan, I told them that I was very greatful for what they were able to do. I already knew he had "something" but we thought it was apraxia. The entire team was amazing up in Boston. We've been going to a developmental pediatrician with him since January.
The geneticist wrote a letter for us to use for our appeal. Right now I need to get get our state senator to help with the insurance and looks like this week I'm going to medicaid. I think for now we will qualify for the medical card. IF I had a job we wouldn't. Right now George is the only one working.
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