Erik Quinn: The Heart of a Family: Here We Go Again

Monday, February 12, 2007

Here We Go Again

Our individualized family service plan (IFSP) is scheduled for Tuesday, February 20th. We meet with therapists who have been taking extensive notes on Erik's physical and mental abilities for the past six months. There will be a panel consisting of an early intervention specialist, a physical therapist, an occupational therapist, and a speech pathologist.

After Erik's last IFSP, I feel a little less like vomiting in the nearest trash can than I did last time, but the thought of this meeting still makes me feel uneasy. There's nothing quite like having your child under a microscope and receiving a score as if we participated in some sort of twisted Olympic event.

I can't believe it has been almost one year since our first evaluation at the early intervention facility. It seems like yesterday. I had no idea what it all meant, and it seemed the therapists were talking in a foreign language. To be quite honest, I didn't pay much attention to it all, as I felt like all of it was merely temporary and wouldn't apply to us. Towards the end when one therapist stated, "We hope you won't be devastated by what we are about to tell you," I remained deeply rooted in denial and kept smiling, assuring her we were perfectly fine with anything they had to say. I failed to predict that everything in our world would come crashing down on us a mere one month later upon receiving Erik's diagnosis.

The following is taken directly from Erik's primary IFSP report dated 02/23/06. He was 16 months old at the time.

Nancy reports that Erik was late in his developmental milestones. He babbled with sounds as a baby but has not said his first word. He is a healthy child with no reported ear infections. Erik does not like thick consistency foods and gags and chokes when fed. He passed his newborn hearing screening on the fourth attempt at six weeks. Mom reports that he is very sensitive to sound. There are no concerns with his vision.

Erik came into the evaluation with his mother via stroller. She wheeled him into the room as he was watching the wheels on the stroller. She then took him out of the stroller and placed him in hands and knees on the ground. He immediately crawled over to the carpeted areas, and cars were placed in front of him. He picked one up and began to spin the wheels. When the examiner came over with some toys, he showed interest but began by putting all new toys into his mouth. When his father entered the room and sat at the table, Erik was asked, "Where's daddy?" and after several repetitions of this, he looked over at his dad. he would take many of the toys and spin them either on the ground or with his hand. He rolled various toys on the ground as well (bell).

Erik does display characteristics similar to children with autistic spectrum disorder. However, further evaluation is not suggested at this time. Erik's scores were more indicative of a child having cognitive difficulties.

They apparently didn't see what was coming, either.

There have been a lot of changes since then. The W bomb dropped almost a year ago, and the dust is settling into managaeble drifts. Erik is walking and talking like a champ now. A year ago he was still acting like a drooling infant when other kids his age had been walking and talking for months. A couple of months after this report was produced, Erik began to walk and made great progress in his developmental milestones, which provided me a lot of hope. I desperately needed hope at that time, and he came through for me in a big way.

Because I'm a little nervous, I looked over the next IFSP report from just six months ago. It seems I don't have much to fear.

Our goals included playing with toys appropriately (check), increased independence in eating with a utensil (piece of cake), interacting more with peers and tolerating noisier, busier environments (hoo-RAH), standing and walking with flat feet/walking with one hand held (yup), fitting objects into defined spaces/using pincer grasp/placing rings on a tower/scribbling (checkedy check check), following one-step directions without gestural cues (affirmative), pointing to named objects (of course), calling people by name (roger that), and asking for what he wants (heck, yeah).

I hate watching my kid struggle. There are gigantic obstacles he is facing physically and mentally. We now have some really great days and some really crappy ones. However, more importantly, he is consistently and genuinely Erik through them all -- loving, sensitive, and hilarious. He always has been, even that day we sat in front of a two-way mirror, unknowingly taking the first step of a very long journey together as a family.

His scores were abysmal, but his personality was still quite apparent, even on the printed report we received in the mail days later.

Erik is adaptable, social, happy, and overall good natured, imitative, independent, and interested in other people. He has a wonderful sense of humor.

Yup. That's my boy.

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Blogger Kati said...

Nancy, you don't have to fear of the IFSP, what you wrote down sounds really-really good!!! I hope Szabi can do these things when he'll be in Erik's age :)))))
Wonderful pics of the hippotherapy, I think I try it with Szabi at spring or summer.

Love, Kati

4:45 AM  
Anonymous Guah said...

That's my girl.

Love, Mom

6:37 AM  
Blogger Kerry said...

It sounds like you are on target for this meeting... he has mastered the latest goals. Yippee! :)

That's very interesting to see what his report was a year ago and then a few months later he moved along quite well. He does so well now that I am always thinking Brady will never be where Erik is at Erik's age. I KNOW, it does not matter, blah blah blah... but I still recognize it. We have Brady's meeting on the 24th and I am interested to see what Brady has mastered.

I can't wait to hear what Erik's goals will be the next go-around. His voice recording sounds just like my two year old non-WS nephew, I keep meaning to tell you.
Maybe he'll start learning some fancy tricks on that horse, ;)?

Love you!

6:38 AM  
Blogger Kim, Grandma to Ava,ws said...

Thanks, Nancy. Your post gives me hope for Ava. You told me once to be patient, that Ava will "wake up" soon and start making progress. I am holding on to that advice. You obviously know what you are talking about, 'cause look at Erik go! However, I think his sense of humor has nothing to do with WS...he gets it from his mom:)

Love, Kim

7:38 AM  
Blogger Aspen said...

That's amazing Nancy! Erik has made HUGE progress in only six months. I do have to admit I am a bit jealous. I haven't seen actual progress in almost 8 months. Sigh...

8:36 AM  
Blogger Every minute counts.... said...

I went back through and read some of the older enteries and wanted to tell you, I too love the song "Stand" and have cried many a time in my car. I think I car there more than anywhere else. That seems to be my breakdown spot! Another of our favs is "My wish" we played it the entire time Abi was in the hospital. She loves that song and sings it beautifully.

Is it okay to add your link to our blog?


10:30 AM  
Blogger Nancy said...

Kati -- I highly recommend it if it's available to you. Our kids seem to have a way with animals.

Mom -- I love you, too. Thanks for yesterday!

Kerry -- It's old and moldy, but all I can say is hang in there. The IFSPs seem to bring to light the positives we don't see as well as the negatives, although I will never like going to them.

Kim -- Ava is so small, and you will likely be amazed at the jumps she will make in development in the next year or so. When they decide they are ready, they really take off.

Aspen -- I love you, girl! Hang in there...progress will come when Daven is ready. I'm waiting on Erik to ask me something someday...anything! (besides "More cookie, please")

Noel -- You may add me to your blog! I am so honored! My mom taught me how to scream in the car with the windows rolled up when I am stressed. It doesn't go over well with Erik in the car, but I have been known to let 'er rip when I'm alone. I'm surprised the air bags don't deploy.

11:32 AM  
Blogger Nicole said...

Nancy, Erik is doing so great!! How amazing that he has knocked off all his old goals. Way to go!! I love reading all about the older kids and seeing what is in store for us. I can't wait. We are definitely still in the drooly not doing too much of anything stage!! Thanks for giving us hope. Love you.

11:45 AM  
Anonymous Anonymous said...

Erik is adaptable, social, happy, and overall good natured, imitative, independent, and interested in other people. He has a wonderful sense of humor.

That's the best part - who cares about the walking, talking, eating with a fork???

(Okay, I do care or else I wouldn't complain so much about Clare, the slug, but you know what I mean!!)


8:45 AM  

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