Imagine you had tape over your mouth for a day. Think about how you could tell people what you need or want without words. That is how Ailyn lives her life daily. She has many signs, some made up, some approximations. I understand more than anyone else since I am with her all day. But, this is becoming a huge issue for Ailyn.
If you know Ailyn, you know she "gets it". You know that she understands everything you are saying to her. She has a way of making people understand what she wants/needs. But, gets frustrated that she can't speak words. She has words and those words are pretty clear.
Ailyn gets speech 4x a week. I sit through one of her therapies. She does very well and tries very hard. She has progressed. But, something is off. I think it's more than a speech delay. She has never been diagnosed with anything and I think it's time to look further into it. I have always thought she has speech apraxia.
Speech apraxia- Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words.
So where do we go from here?? I have NO clue! I talked with a father at the hospital yesterday. I mentioned how well his daughter talked. She has CP too, and you can tell she has a delay and tries hard to talk. He told me about apraxia. The little girl is in private speech lessons called "prompt". NOT covered with insurance (of course). He gave me the name of a grant I can get for therapy. So I have somewhere to start. I was told the hospital we go to does not have the training for apraxia. Awesome..... so that may be why she hasn't been diagnosed.
Ailyn will throw everything in sight if she wants to say something and can't. If you are nearby, you will get something thrown at your head. It's hard to reprimand her for being so frustrated. I get why she is throwing stuff or hitting us. But, we can't tolerate it. So it's very hard to get through our days. I am sad for her. I can't imagine not being able to say what I want. I want to fix it for her.
If you can help direct me in any way that would be awesome. Or how I can help her at home. Thanks in advance!!!
