It’s Been Nice Workin with You

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It’s amazing what a little insight can do. Little Man has been receiving “speech therapy” through the state, for six months. In that 6 months, he has learned to point to the picture of himself that says “I want”, put a picture of one of his toys next to it, then point to them in turn. This is seen as him saying “I want ball.” He has not learned anything else. Not “I feel, need, hear, see”, or any other sentence imaginable. It has literally been 6 months of him looking at the card, grabbing the card, putting the card down, pointing at the card, me saying the sentence for him, and me getting whatever it is for him. Now let us compare that to 17 days of ABA with his therapist. He can sign 30 words, and sign the sentence “more food please.” He can tell me when he is tired, he can tell me when he is hungry or thirsty, and he can sign his colors and a handful of animals. At the store, he pointed to a fruit pouch cap and signed “red.” He was telling me that the cap was red. I smiled and told him “yes.” He wasn’t looking away, or at a card, but directly into my eyes. It wasn’t just a statement, it was him wanting me to know something. He couldn’t do that with the few PECS he had.

Why couldn’t he do that with PECS? Because the therapist only taught me how to teach him to point at “I want.” I had no idea how to teach him about “I feel” or how to show what a picture looks like for “I’m hungry.” She said she would make me new cards, but didn’t. In fact, she had cancelled 3 out of 4 appointments one month and then 2 out of 3 the next. That means my son’s only means of communication and my only means of learning PECS, was never around. So when she finally showed up one day, and I told about all the wonderful progress he was making with signs. She couldn’t have cared less. Her reasoning? “His preschool teachers won’t be speaking in sign language, but they will be using PECS.”  I understand that not everyone can speak sign language, I happen to only be able to speak in the words I learn from the ABA therapist and the sites online. But communication is communication. She should have been happy that he was finally letting me into his world and he was trying to share the things in it. But she was mad that signs had provided him the means where her serious lack of commitment with us in PECS, had failed.  She said she wouldn’t be coming to his appointments in the morning anymore because that’s when the ABA therapist was here.

When he had his six month evaluation ( a week later), I told her how the ABA therapist was working with him on mouth and breathing exercises  and I was wondering why she had never done it. She said she could work with him on it if I wanted her to. I was dumbfounded. YES!!!! The whole point of speech is to learn how to talk and she hadn’t done a single thing to help him do it. That’s her job! When I told her I would rather have him sign then do PECS, she said, “Well, if you choose to do PECS instead of signs, I’m only going to come once a month” (instead of once a week). I was pissed. My son was finally learning how to communicate. He was finally learning how to use his mouth to speak, and it was all from a young ABA therapist who was SHOCKED that he had never done any of the mouth movements before. What had the other therapist been doing for the past 6 MONTHS?! If 17 days of ABA could produce this much progress, imagine what 6 months will do. So I looked at the therapist and said “It’s been nice workin with ya.” She frowned, glared and stomped out.

People tell you that you have to be your child’s advocate when your child has special needs. No you don’t. An advocate is there for you and tries to help. A mother with a special needs child has to stand up to “professionals,” research the latest data, protect from unwanted comments and advice, work diligently every single minute to make sure there is progress at the end of the day…the list goes on. We’re more like dictators. We have to demand that people get up off their lazy butts to help (especially with doctors and therapists who have soooo much work to do (sarcasm here)), we have to make sure everyone does what they are suppose to do, we have to over see every aspect of the child’s life, we have to guarantee their safety (both physically and mentally), we have to do everything, literally everything, to ensure that our child is taken care of the way they need to be taken care of. Sometimes we have to burn bridges. Sometimes we have to piss of “professionals.” Sometimes we have to alienate ignorant family members and/or friends. There’s so much that goes into it, that I can’t even begin to list it. But one thing is for certain; standing up for your child is the ONLY way to make sure they are getting the best services.

I like to think this transition is liken to that of a snake losing its old skin. We were dependent upon a person and system that obviously didn’t care for my son or his special needs. But now we have a therapist who cares, the knowledge to move forward, and the progress to show that it works. Will we regret using signs when the school says no one speaks in sign language? NO! Because I am with him 24/7. If he is going to learn to communicate, in whatever form that he chooses, it has to start at home, where he spends all of his time. If he ever decides to start speaking with vocal sounds, then I will graciously help him with those. But until then, there is ZERO harm in signing to him. Letting him talk with his hands is allowing him the ability to see that you can communicate to other people, that you can let them into your world. It shows him that he isn’t alone. And that, is worth any “inconvenience” anyone else has.

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