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Halley's Page
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Kids Talk Back!

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Online Diary of Pro-Efa study / Mailbag

Hi!
This is Halley and her daddy! Halley is 4 and 1/2 years old, and has apraxia. She has been in speech therapy for the past two years, and the progress has been slow. She is now up to about 60-75 words, and is starting to put two words together. She is a very funny girl, always laughing and playing jokes on people. She is incredibly smart and has a real knack for puzzles, usually ones even mom can't figure out.
It all started when she was about 18 months old, my husband commented on her not talking, and like most parents, I said oh she will, all kids talk on their own pace. Well by the time she was 2, she could say 5 words, and well my husband and I were the only ones who could understand her. I took her into her 2 year checkup and discussed this with her pediatrician, who referred me to the "Babies Can't Wait" program. I called them, they came to my house and did an evaluation on her, finding that everything was normal or above normal, except her gross motor skills and her speech skills. She was then barely at a 1 year old level for speech. They then assigned me a speech therapist who started speech twice a week in my home. The very first speech session, was painfully slow, and so it has gone since then.
In the next year we noticed behavior issues, and sleep problems. I found information on apraxia, on the internet, and was sure that Halley had it, the signs and symptoms were there. I brought this up to her therapist, who did not know much about it, and said that it was just to early to tell. I took her in to see her pediatrician, for her sleep problems. She really did not sleep very heavy, and not very long, she was up til midnight or 1 am, and come 7 am she is up and ready to go, very active I might add. He then told me that all children sleep differently, and not to worry, some kids just need less sleep. A few months later the behavior was driving me insane, and by now she is over 3, and still not potty trained, and just would not do it. He then told me that her behavior was normal for a 3 year old.
At 3.6 she finally started using the potty, yet she still to this day has accidents at night, which at this point, I am not worried about.
She started a special education pre-k at the county school 3 days a week. She has a very, very strong personality and a great self-esteem. She was in the class with children of all abilities, from speech problems, to down-syndrome. She fought the speech therapy every step of the way, but loved school. She worked hard at speech, but the progress was slow.
By now she is 4.4 years old, and in a "normal" pre-k program and still fights the speech, she is still seeing her speech therapist, and now sees the one from the county school. She fights them both. The first 8 weeks of school was very scary for me, the tantrums and the rage she had really scared me. She is now calming down in that respect, yet she might say 75 words, and can not say sentences. I have ordered the Pro-Efa supplements and should start them some time this week, I will be keeping a journal of her progress, and will let you know how things go.
I must say that it is so hard to watch your child struggle with speech, wanting to talk and sing. She has wanted so badly to sing since I can remember, she would move her lips to songs, knowing the words would not come out right. I have fought emotions from sadness, to anger, to joy as I finally heard her say my name. She still can not say yes, instead she has chosen the word "nay", and at this point I accept it. I am in the process of finding a new pediatrician, who frankly does not seem the least bit conerned that she still can not talk. It is a long road but she is a strong happy child, who makes me laugh alot. I love her and will continue to fight for her and other children, because this is not her fault, nor mine.

Please check out the link for the CHERAB Foundation, a wonderful organization dedicated to the study of apraxia. New studies are happening everyday, and this foundation is a big part of it.

The CHERAB Foundation

Kids Talk Back!

How frustrating it is when we try so hard to get help for our children from health care professionals and our cries are just ignored. I have dealt with a pediatrician that has absolutely no concern that my child is almost 5 and is unable to speak a full sentence. In fact, he has no idea that she can not communicate! When I have taken her in for checkups or when she is sick, he does not even know that she can not speak. I have to remind him everytime! She went in for vision and hearing screening prior to pre-k, and during the vision test, when he wanted her to say the pictures on the wall....I just looked at him, and explained to him that she is unable to express words like that. She was annoyed and frustrated with the whole experience, and really gave the doctor a hard time...which I do not blame her for.
Recently I took her in for an ear infection, which he proceeded to flush her ears out with a large syringe and water expressed into her ear, and when she cried, he just stated to her not to squirm, and that this was not a big deal....maybe for him, but to my 4 year old, she did not like it. With an ear infection I am sure that water being shoved into the ear was very uncomfortable. The only comment he has ever made about her speech is that he is glad she is getting speech therapy. When I have taken her in for behavior and sleep problems (on two different occassions), he just expressed that her problems were completely typical of her age group, and that I was exagerating. Luckily, I am moving soon, and will have the opportunity to get new doctors for her, and hope to experience a much more pleasant environment for her!!

Contact Liz



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