I was flipping through the channels tonight, and now that we have cable, PBS has become a distant memory of poorer days, but I felt like I should stop and just check it out. So I stopped, and was surprised to see a program about a chromosomal mutation called fragile X that presents in children like Autism does. I felt like this was for me, and that I need to get Nathan tested. I actually was just asking his therapist yesterday if we should get genetic testing done, because I had read somewhere that it is beneficial, to which she looked at me like I was a overanxious, paranoid mother, and wondered what it would change. I think knowing is 99.9% of the battle. I think that if I had a definitive answer on why he is the way he is, then we would all look at it differently, and be able to help him better. Plus, it is genetic, so we could make sure that if, say, Matthew had it, we could get him help earlier (I'm not saying I think he does, but just an example).
Nathan was diagnosed a while ago with PDD (which is on the autism spectrum) and ADHD, so is very hyper and busy and difficult to manage, but is about the sweetest little boy you'll ever meet. I think that we are being led down this path, and I'm very hopeful to see whats around the bend. Any prayers that are sent our way will be greatly appreciated and gladly reciprocated.
10 comments:
Hey there katie!! It has been FAR too long since I've seen you- or chatted with you!! I'm so happy that you posted :) I miss you guys still tremendously. We will definitely send prayers your way! is your email the yomomma one?
So happy to see your new post in my reader! Wow, I really hope you can get some info and testing. It would be so good to know once and for all. Keep us posted! How is everyone else doing? I guess I should be a better friend and write or call sometimes. I do think about you and miss you!
Hang in there woman!
Prayers already coming your way
and know that we can talk whenever!!!!
Love you guys:)
We're thinking of you and praying for you and your family! Thankyou for the update! I miss your posts!
I hope you figure things out. Ken's sister has a boy that is going through testing too. I hope you find some answers that will help you better care for Nathan.
Oh, Katie. We will definitely pray for you. I feel like I truly need my own prayer list at home. There are so many things, and each are just as important as the other. We will wait anxiously to hear how it works out. Love you!!!
Katie!! How are you doing? I am so glad to see a blog post! How was your summer? I hope you and your cute family are doing well! I am in Utah now so if you are ever out here...call me!
Katie, did you know Sister Lund? I'm sure you did. Anyway she has 2-3 grandkids with Fragile X. You should call her up, she is very willing to talk about it, and she would love to hear from you!
Hope everything else is going well.
Hi Katie,
You don't know me, but I went to high school with Steve and Steph in Boise (my maiden name was Nicole McQuain -- hi Steve!).
Anyway, I saw your blog linked to another friend's and somehow stumbled onto this post. I have a 5 year old son who was recently diagnosed with Asperger's and just wanted to tell you that I hope you get an answer soon. Waiting for a correct diagnosis was really difficult, and it seems like things were easier to deal with once I knew what was really going on. Keaton was originally diagnosed with PDD-NOS but about 18 months later I had him re-evaluated by a developmental pediatrician who confirmed my suspicion of Asperger's almost immediately.
He is also the sweetest boy in the world, but he is a challenge in more than a few ways!
I'll be interested to see what diagnosis you get, and will keep your family in my prayers!
Take care and good luck,
Nicole
I'm just going to post my reply to your reply here because what IS the protocol anyway???
First of all, who said anything about my sanity being intact or regular showers? It's still a challenge for me pretty much every day when I have to send my sweet little boy out the door to a school that has no clue what to do with him. It's been an exhausting process just trying to get his teachers to understand that many of his behaviors are beyond his control and that they can't punish him because "he hums while he colors". Seriously.
But if I am counting correctly, I have one less child than you (and my "baby" is 3) and my husband finished his residency 3 1/2 years ago, so I have a full time spouse again. Those things (especially the husband part) help me come close to functioning on most days, but there are still plenty of times I think I can't get through another report of "bad behavior" at school, or even worse, at church. That one stings big time.
Anyway, Keaton was almost 5 before they got his diagnosis right because some of his symptoms are pretty mild. It drove me nuts to get the PDD-NOS dx though, because I just knew there was more to it than that, and there was.
If you ever want to talk about it or ask questions or vent and don't feel like doing it on the internet, feel free to email me:
terry (dot) nicole (at) gmail (dot) com.
I've written about Keaton specifically a few times on my blog too, so feel free to dig around those posts for more about him if you want.
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