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Monday, January 6, 2014

Helping Nick talk: Change is hard

Pediatrician: How is Nick doing with his talking?
Me: He has about two dozen words most of which only I can understand.
Pediatrician: At his age, he should be understood by people AT LEAST half of the time. You should call Early Intervention.

At that was it. Nick's referral. I knew it was coming but I so desperately wanted to keep putting it off. Even though in my previous work I had helped other parents through the early intervention process and I personally had done it with Tommy, I kept procrastinating. I was sure he'd get better on his own or with my continued assistance. But you know what I realized? He won't, because other than him getting older, no other variable would change. His delays, although small, could snowball into a larger and more serious problem unless we introduced new ideas into his environment now.

In short, we are both going to have to change. And change can be hard.

With trepidation, I welcomed the therapists from early intervention into our house today. Through their evaluation process, they determined that he knows his shapes, can match colors, and pick an object out of a group of items when asked to do so. He can kick a ball and jump getting both feet off the ground. He can put little tiny objects into a little tiny opening of a bottle. He uses a fork to feed himself and drinks from an open cup.

But he didn't use an intelligible word the entire time they were here except for "BYE!", which was basically his way of saying "get the hell out of my house". The occupational therapist thinks he has low oral muscle tone which could explain not only his lack of verbal communication, but also his frequent drooling and desire to chew on items. They already warned me that they want me to take away his pacifier, even though he only uses it for sleep. The therapist says ever time he uses it, his mouth "resets" itself.

I explained to them that he never really liked his binkie as an infant. He never slept and I never slept. Once I weaned him from his bottle at 12 months old, he went straight for his pacifier and started sleeping wonderfully. I asked them if they knew what it felt like to not sleep more than 4-5 hours at a time at night for ONE YEAR? Or to expect to get simple chores done or time for yourself during the day only to be interrupted by an baby who naps for no longer than 45 minutes? Although sympathetic, they did not waiver. Change is hard.

In addition to low oral muscle tone, Nick needs STRONG encouragement to attend to and cooperate with activities he is not interested in doing at the moment. I thought all toddlers behaved like this but come to find out that with both my boys, they are more strong willed than most. And as a result, I have probably accommodated Nick's wishes too often as means of avoiding a meltdown from him or given him something too quickly without demanding a verbal request from him. I said to the therapists... its funny that as a parent of an infant, you are always trying so hard to assess and attend to your baby's needs as quickly as possible. But once they become a toddler, you are expected to reverse your behavior to encourage independence and allow them to satisfy their needs on their own or ask for assistance. Although sympathetic, they did not wavier. Change is hard.

I know that Nicholas' speech delay and behavioral issues are small and with minimal assistance and intervention, will most likely be resolved. But I am envious of parents of typically developing children because this. is. hard. And for those of you who have children with more challenging delays and disabilities, I salute you. You have to change your whole life to do what is best for your child. Because ignoring it is not an option.

I will have no other resolutions this year but to make the changes I need to to help Nick talk.

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