Erik Quinn: The Heart of a Family: One Year IFSP

Tuesday, March 06, 2007

One Year IFSP

My wish for you is that this life becomes all that you want it to,
Your dreams stay big and your worries stay small,
You never need to carry more then you can hold
And while you're out there getting where you're getting to
I hope you know somebody loves you and wants the same things too

-- "My Wish" Rascal Flatts

Erik and I just got back from an extended morning/afternoon at our early intervention facility. We went to our respective groups this morning and then had two hours to kill before we went back for our one year IFSP meeting. I drove over to my folks' house nearby and watched The Daily Show and the Colbert Report while Erik played with his toys and brought me books to read. We were both relaxed. The anxiety I felt before our prior evaluations failed to quicken my pulse and cause my stomach to flip like a fish out of water this time.

Brian met us back at the school for the IFSP at 12:15. There was a panel of four people to greet us. They were sitting in an ominously dark classroom with a humming laptop computer. The meeting seemed much more formal this time. I smiled when I saw Bev's bright red "Team Erik" bracelet peeking out from underneath her sleeve. Once we began our discussion, I commented that the goals they set for Erik each time he was evaluated over the last year seemed ridiculously lofty to me at the time but that this evaluation felt very different. In the past it seemed unlikely Erik would come close to reaching any of their seemingly advanced goals, but he has proven me wrong time and time again, mastering new skills and meeting almost every goal as he grows. Today we again set goals, including pretend play, using pronouns, climbing on playground equipment without assistance, using both hands to complete tasks, using three words together, asking questions, and dressing/undressing himself to prepare for toilet training. Erik has already clearly begun to progress towards most of these goals, although his disability makes some typical activities challenging. However, he has demonstrated that he is beginning to physically and mentally compensate in areas he has difficulty with, such as feeling stairs with his toes/feet when he cannot visually determine their edges. In other words, he is beginning to adapt to the world beautifully using his strengths to triumph over his weaknesses. It's an amazing process to watch unfold. I couldn't be more proud of our son.

Because I do not witness what happens in his classes each week, it was wonderful hearing what the other staff had to say about Erik. He is obviously a beloved part of the program. He knows each of the numerous children and therapists in his classes by name and greets them each week, something no other child there is able to do at age 2. His turned in left toe was not evident in class today, but his physical therapist told me she is beginning to determine it is a problem that originates in his hip and pelvis that results from anxiety manifested as muscle tension. He will continue to wear his orthotics for most of the day for the time being to keep his feet flat. They asked us what he loves in order to help coax him to learn, something they all agreed is generally not a problem for Erik. We told them that he loves his family, music, and the outdoors. He is easily distracted and anxious, which is the biggest obstacle in his learning, and we will work on that in different types of busy environments over the next year. This has already greatly improved.

We now look forward to taking a big step. By September, he will likely be the youngest child in his preschool class but will have an extra year there before he enters kindergarten as one of the oldest children, something I see as a definite plus as he begins his formal education. We will probably decide to enroll him in the preschool class at the same EI facility he is accustomed to two days a week for two hours at a time, and he will ride the school bus home. I am hoping there will be typical children in his class.

It's hard to believe that just one year ago we wheeled our quiet, drooling 17-month-old in for an evaluation. He was unable to walk or follow instructions. He did not play with toys appropriately. He barely responded to his name. In fact, he did a whole lot of nothing, although he was very pleasant about it. He really had little opinion on anything at all and had never said "no." Not once.

In contrast, today was an emotional day knowing how far we have all come and how much brighter the future looks. One year ago, I thought my life was over. I thought the darkness would never lift. I did not know how we would begin to survive what had happened. My son would either die or live his life in an institution. Today I can take a look back and easily see that those profound, seemingly mortal wounds have become shiny, pale scars I will always carry with me. I actually forget about them now unless the light hits them just right.

I can see that there is a lot of life left to live. I am excited to see where this beautiful boy takes me next.

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Blogger Kerry said... I am thrilled that this went so well and that you are so happy. I so hope in one year I can say all the things you did today about my own son. You have both worked so hard and I am so amazed once again by you.:)

Love you- K

4:28 PM  
Blogger PASLAY'S FROM IDAHO said...





5:56 PM  
Blogger Nicole said...

Thank you so much for sharing that wonderful report. Erik has made HUGE gains and is such a symbol to me of what Emerson can possibly do. Thank you for giving that to me. We are still in the drooly, not doing too much stage and you give me such hope. Congratulations on a great year!! Well done.

6:48 PM  
Anonymous Anonymous said...

This entry should be given to each family just receiving a WS diagnosis! Very encouraging!!


7:37 PM  
Blogger Lisa R said...

Wow great repot and picture. They would be lost there without Erik :) I TIVO the Daily show everyday LOL and Ben and Jerrys has a new flavor referring to the Colbart report LOL haha....It may be good we do not live to close, we could be trouble HAHA

3:44 AM  
Anonymous Gua said...

I so clearly remember our trip over the mountain to Sophie's Run last year. I kept thinking that there was no way I'd ever feel true joy again, that I would always have the sense of foreboding and sadness of that awful night when we got the call about Erik's diagnosis.
If only we could have known! And Monday, two days before his IFSP, we watched him climb the stairs to the little slide at our neighborhood park... all by himself, he sat down and off he went down the slide. Goal reached, and it wasn't yet a goal!
Hooray for us all-- for you and Brian, for the wonderful Williams family we're a part of, for the bloggers who have been so supportive and empathetic, and most of all, to our amazing Erik. I look forward to the new year.. something I thought I never would be able to say again. God bless us all!

Love, Mom

5:59 AM  
Blogger Miss 1999 said...

How absolutely WONDERFUL! This post really warmed my heart. I have tears in my eyes, just hearing about how far he's come, and knowing he has so much ahead of him. I believe he's really going to make even more progress this year!

God Bless! *hugs*

8:37 PM  
Anonymous Aspen said...

Sounds like you had an amazing meeting! Get that out of the way and now you can really enjoy your time with Erik without having to stress about the goals he has or hasn't achieved. (Well for a little while at least.)

Seeing him makes me miss my precious Daven even more.


9:31 PM  
Blogger Teresa & Shawn said...

That's wonderful about Erik's evaluation. I tell you, I am amazed at how much Erik can do! In your other post, you mentioned Erik hitting the two's. We've entered that with Clare as well. As frustrating as it can be, it makes me so happy to see her acting like a normal child!!

3:05 AM  

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