Sunday, August 9, 2009

The Payoff--Snugglebug Walks!!!

On Tuesday, we had our regular visit from our physical therapist through Early Child Intervention. She comes to our house twice a month to work with Snugglebug's gross motor skills and sometimes his fine motor skills. For the most part, we work on walking. She teaches me how to teach him. She is like a coach who wants to see Snugglebug succeed almost as much as I do.

Tuesday, Snugglebug took an extra long nap. After sleeping for almost 2 1/2 hours, I actually had to wake him for his PT appointment. After rubbing the sleep out of his eyes and drinking some water from his sippy cup, he was ready to go. It didn't take much coaxing to get him to get him to show off the last week's accomplishment! I set him in front of a chair, and once he had his balance he walked the five or six steps from the chair to me. He grabbed on to me, I turned him around, and he walked back to the chair. He did this once, then twice, then three times!

But, on the fourth lap, he bypassed me, turned the corner, walked around the sofa, and another ten or twelve steps before reaching his favorite push cart.

The therapist and I leaped to our feet at the same time! We each pointed at Snugglebug as if the other had missed the great feat! And we stood in shocked silence so as not to disturb the concentration now going into walking. His steps were shaky, but he was determined. Once stabilized by his cart, a round of applause rang out from both of us. We cheered for his determination, his accomplishment. And I cheered for ours!

Finally, the big payoff! After 8 therapy sessions in four months, he had gone from not even being able to crawl to walking by himself across the room! I rejoiced! I couldn't stop smiling or hopping up and down!

Finally, the big payoff! After 12 months of crying (me that is) everyday, 6 months of hardwork, and 26 doctor's appointments, lab appointments, and therapy evaluations, we had reached the big payoff! He was walking!

Six months ago, I had watched a two-year old playing with a train set and wondered if my son would ever be able to walk around a table and push a train. Six months ago, I had no clue what was wrong. I just knew something was wrong. On that day, I blinked back the tears, as the fears raced through my mind. We have come so far in six months. God has definitely heard our prayers and answered them!

I am reminded of a "conversation" my pastor and I had via Facebook. He commented that it looked like it was going to rain. I replied and said probably not since the radar showed the clouds moving away from us. He replied that he, being an optimist, believed in prayer even for rain clouds. Yes, I wrote, I forgot that prayer works for rain clouds, too. It didn't rain that day, but it did rain a week later.

Sometimes, God doesn't answer our prayers that day. Sometimes it takes time. What we see is only the starting point for God. It is not the ending point. The payoff for God is the amount our faith has grown through the challenge. I think my faith has grown by leaps and bounds over the last 18 months.

Monday, August 3, 2009

Let Us Now Speak Russian!

Imagine a doctor, other than your pediatrician, telling you that even though you are English speaking, living in an English speaking country, and are surrounded by English speakers that your child's native language is Russian. Of course, the first thought going through your mind as a parent will be, "that's impossible." But the doctor reiterates that if you want your child to speak, you must teach your child Russian. Sounds impossible and ridiculous, doesn't it? But that is exactly what has been going through our minds, mine and my husbands.

While my son is hearing, with only a small hearing impairment, which is correctable with pe tubes, he most likely will need sign language to communicate. See the duplication of 7q11.23 effects the part of the brain that forms speech. And even though Snugglebug can understand everything I say, the words just aren't there for him to communicate. The frustration is obvious on both ends, his and mine. The desire to communicate his needs is frustrating and my desire to understand him is heart wrenching.

So, each day, a dozen or more times, I refer to a sign language manual my sister gave me and an online sign language dictionary. (An aside: My sister is a sign language interpreter, and I believe God gave her that gift so she could bless me in helping me to communicate with my son. God works in awesome ways!) I look up words that we use over and over again such as bird, dog, cat, pear, apple, etc. It would be fine if I only had to remember four or five words in sign language, but an entire dictionary! It's daunting. Two hours later, I have forgotten the sign I looked up earlier and have to check it again. Because not only do you want your child to speak Russian, you want your child to speak it properly, and not like a backwoods hillbilly that no one can understand.

So, I race to look up the word for bird once again and by the time I find it, the hummingbird has left the feeder and Snugglebug is on to something else. I look up that word, too. As I sign the words to Snugglebug, I pray that eventually his speech abilities will kick in. Some studies have shown that adults with the same genetic syndrome have little or no speech problems. The question would be: Are they on the least end of the spectrum or the worst end? Did they "grow out of" their speech problems or were they less in the beginning?

Nevertheless, learning and teaching an entirely new language is daunting. Snugglebug is 17 months, and we have decided we need professional help learning sign language and teaching it to Snugglebug. So, it is time to enlist a speech therapist. The problem is that our pediatrician disagrees, or I should say her staff refused to allow me to pass on my request. The nurse turned me down flat and said I would have to make an appointment if I wanted a script for speech. I guess she is afraid I will give him speech when he doesn't need it and make him immune to speech down the road. Or perhaps the nurse was worried about me marketing the scipt on the street. I hear scripts for speech evaluations go for high dollar! And there is no doubting that some people get a thrill from the spoken word. I would hate to see a speech therapy session fall into their hands or mouths. Or perhaps, she interpreted my request to be a desire to have the youngest person ever in Toastmasters.

Whatever the nurse's reason, and I tried to reason with her, she insisted we needed an appointment before we could even consider speech therapy. Honestly, you would think I had told her I wanted to teach him Russian!