It is strange to put joy and apraxia in the same sentence in the title of this post. One would think that there could be no joy in the fact that your daughter cannot talk very well and that she has to work so hard to communicate. With all the struggles that come with apraxia there are some moments of total joy.
Seeing and hearing her slowly but surely master new sounds is a joy. Spending time together practicing sounds while playing a game and enjoying a good laugh together is a joy. Being totally surprised when she says a new word or sound like “quack” is a joy. There are joys, joys that need to be celebrated. I certainly would wish that my daughter would not have to go through this, but at least we can have some joy.
Apraxia does come with its share of frustrations as well. In the beginning many of the frustrations were from problems communicating with her, but as time has gone by those frustrations become less. It is unfortunate that the biggest frustrations become with the institutions and people that are suppose to help your daughter learn to talk.
Speech language therapists I am sure all mean well, but they are not all created equal. School speech therapists that refuse to use PROMPT even though you you know your daughter responds best to it is frustrating. Private speech therapists who quit out of no where and blame us for substituting private speech therapy for daily practice is extremely frustrating. School systems that do not want teachers to attend apraxia conferences because it is not a priority for the school board makes you want to scream.
Thankfully many of those frustrations are in the past. We have an excellent private speech therapist that our daughter works well with. The new school speech therapist will use PROMPT to help our daughter. In the meantime I celebrate that my daughter has somehow “found her quack” along with “yes” and a list of other new sounds. She will talk and someday maybe, just maybe we can celebrate no more speech therapy.
For those that are wondering about the quack reference, at a recent kindergarten meeting the teacher read “The Duck that Lost It’s Quack”. My daughter surprised me by saying quack along with all the other kids. Ever since then she has been quacking, and trying out a number of other q words. Just in case you were wondering.
I have not posted much about Erica’s progress with speech therapy. It takes her a lot of work to learn how to say new sounds and words. She is becoming much more understandable over the last little while. Just the other day though she started to say her name. My wife and I were quite shocked because we have not really worked on getting her to say her name. I do not usually share videos that I take of the kids but I wanted to make an exception this time because it is such a treat for me to hear my daughter say her name.
You might notice that she says “Erita” in stead of “Erica”. She is just starting to learn how to create the back K and G sounds.
While I am by no means an expert in Apraxia, I have certainly been learning a great deal since my daughter was diagnosed with it. Here are some of the things I have learned.
People have no clue what Apraxia is. I can understand that, I did not either until my daughter was diagnosed with it. The problem is, after you explain it to them, they still do not get it and say stupid things like, well she will grow out of it, or she will get better. Next time someone tells you their child has Apraxia, don’t try to make them feel better by saying things like that. Their child will not get better, they will not grow out of it and it will be a long hard road for them and their child. Their child will need a lot of speech therapy for many years, and even then there is no telling whether or not the child they love will be able to speak reasonably normal.
That some rules do not make sense. For example, my daughter was under the care of a speech therapist with the local health district, when she started school she could no longer be seen by the speech therapist that is part of the health district. In this case that is alright because my daughter is in a special school where she gets speech therapy twice a week for 20 minutes each time. The average amount of time a student gets in the public school system is 15 minutes a week with another student. My daughter is lucky, but when she moves into the regular school system that will not be enough time. The rules of the school and health district state that my daughter cannot be seen by a speech therapist in the health care system if she is part of the school system. Children with Apraxia need much more speech therapy than the school system can provide, their rules are not helping children, they are harming.
Private speech therapy is expensive. While my daughter is getting more speech therapy in her school than most, we have decided to hire a private speech therapist. While she is expensive in the few sessions my daughter has had they have been good. Progress is slow but my daughter has shown a willingness to work with the new speech therapist and hopefully she can help my daughter learn how to talk faster.
The Government can help. I know it shocked me as well to learn that the Federal Government can actually help kids with Apraxia. While the rules of the local health and school do not make sense and private speech therapy is expensive, the Federal Government offers the Disability Tax Credit. Children with Apraxia qualify for this tax credit and all you need is your speech therapist to fill out the form and then you send it in. The money we are getting from the Federal Government Disabilty Tax Credit is what is paying for the majority of the private speech therapy. All the help I can get for my daughter the better.
It is challenging having a child with Apraxia. I wait for the day that my daughter can tell me how she is feeling or say “I love you Daddy”. While she can communicate in many ways and is smart we live in a world where verbal communication is important and I just hope that my daughter will be able to be a part of it.