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!