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Halley's Progress (Online Diary)
Life Before Pro-Efa

Life Before Pro-Efa......

Before writing this, Halley had a spell of regression, it lasted for about 3 days, but it was such a reminder of what her speech was like before Pro-Efa. It brought it all back for me. She was not opening her mouth, she was grunting and pointing. This was the worst regression she has ever had, though it helped me remember Life Before Pro-Efa, more than I could have ever imagined!
I guess I should start from the beginning - where I noticed the speech problems. When Halley was around 14 months, her daddy and I had a conversation about where he thought she should be, she was basically nonverbal, very little babbling came out of her. He asked me, "Shouldn't she be saying something?" My reply was pretty typical, I said, "Oh she'll be fine, all kids talk at their own pace." I would go into stores, and people would comment that she was such a good baby. (Because she was so quiet) As the months went by, she babbled a little, but looking back now, it was not a whole lot, and probably not the typical amount. By the time her 2 year checkup came around she could say 5 words, and only recognizable by me. So I took her in to her pediatrician's office, who addressed my concerns, and referred me to the "Babies Can't Wait Program" (Our state's Early Intervention Program) I contacted them, and set up the meeting and the evaluation. They came out to my house to do the evaluation on her. They made her do all sorts of games and tests, and she hated it. I must say she did not cooperate very much. She was never one to like games like pattycake, and peekaboo..she always looked at people like they were crazy when they tried to play games like that with her. So they did all the tests, and the results came out that she was average to above average on everything except verbal expression, and just a little bit behind on gross motor skills, and they told me she was behind on that because she could not walk the straight line...(I remember thinking, OK so she can't pass a DUI test, but OK) She was verbally at the level of a 12 month old, which I pretty much knew that. So they set it up for home speech therapy, by the time all this happened, 3 months had passed.
After the 3 months had passed and we started our first speech therapy session, she was still at 5 words, and hardly opened her mouth to speak. She mainly grunted and pointed. I remember the first day, the therapist had brought bubbles, she was trying to get Halley to say "pop", she tried the entire 30 minutes, and Halley's attention span, was sooo short, she did not want to participate. Not much happened that session, so we continued to do therapy twice a week for 30 minutes. After a few sessions, I remember her therapist telling me, "I have been doing this for twenty years, and only 1 kid has ever beat me, and she is not going to be the second." After months went by, the results were really slow. I was still hopeful. Halley hated therapy, she refused to cooperate. Her therapist suggested that Halley was doing this for control, so I decided to MAKE her speak. (Remember I have never heard of apraxia) So before she got anything she had to say it. I did this for a couple of weeks, it was horrible, she would just sit on the floor, and refuse, sometimes she would just walk away, and not even try. She could not even attempt to repeat words, sometimes she would not even try, and other times she would cry. After about 9 months, I decided to use the Internet, and look up delayed speech, that is when I found the first apraxia website. I contacted them, and they put me in contact with others in my area, who just happened to be having a get together soon. So I planned on attending. I thought this might answer a lot of questions for me. At this time I believed Halley to have apraxia, and spoke with her therapist about it. She told me she was unfamiliar with apraxia in children, and really leaned toward her not having it. She again thought that it was a behavior issue with Halley. She attended a class by a "specialist" on apraxia, she raised the money to attend this. She went and when she came back, she showed me her notes, and I really believed she had it, and she told me that Halley is just too young to diagnose, that they at least have to be 4 to get a diagnosis on this. So I attended the apraxia party, and met a lot of other children and their moms. I kept asking questions about how these parents got the diagnosis of apraxia, and really did not get an answer. Some of the children had autism, SI, hyptonia, and I felt so lost. All these terms I had no idea what they meant. They would ask me if Halley had apraxia, and I would tell them I thought so, and that would be it, they would go on to someone else who knew more, or whose child actually had it. I left feeling just as lost as when I came in.
At this point, after months of mentioning apraxia, I put it to the back of my mind. By now Halley was 3, and could say about 20 words, she was now being released from the EIP, and we met to set up "special ed. pre-k" at the county school for the next year. I was anxious about this, knowing that Halley would be in class with a lot of children with more severe problems than her own. I was worried that she might pick up others speech problems. By September she was ready to go, so I sent her 3x a week for 4 hours, she really loved it. She saw all the other children in her class as equals, one little girl was in a wheel chair, and had to be fed by a feeding tube, she loved this little girl. Others had down syndrome, and another had speech problems. They all had areas that needed help, and this seemed to be best for her self esteem. She began receiving therapy from the county therapist in this class, and fought it all the way, The behavior issues really began to get worst at this point. Her home therapist, she would fight, she would hit, spit and kick. At times, her therapist had to hold her down, just to calm her down, to get her to at least pay attention for 30 seconds. She fought her other therapist, not quite as violent, but still refused to cooperate. By February, she was at 35 words, she gained just a few more words by starting the pre-k program, but progress was still so slow. Her behavior was getting worse.
By the summer, and when school was out, her at home therapist, was really beginning to feel depressed, wondering if she was the right therapist for Halley. She decided to wait until her regular pre-k program started in the fall to see if she would continue to work with Halley. School began, and the teacher knew of Halley's speech concerns. She still received therapy from both therapists at school, but fought them both. She really cooperated well with the teacher, and was really well behaved, just when it came to therapy, she resisited. Every Friday when I would pick her up, she would have a complete meltdown. Kicking screaming and spitting. She refused to cooperate with anything. This continued, and I was debating on pulling her out of pre-k...what should I do? I could not deal with this much longer. I remember one day after dealing with her Friday meltdown, and her just refusing to cooperate, I just lost it. I just started to cry, my husband held me, and I told him I could not do this anymore. He said, yes you can, you do not have a choice. What was I going to do, I could not stand her acting this way. Everything I asked of her, she flat out said no, would throw herself on the floor, she did not care about the punishment, she did not want to, so she wasn't going to. I really was at the end of my rope.
Then one day in October, my sister came across some sites about apraxia, she still does not know how they came to her, as she was not even looking for them, but it was the Cherab Foundation site. She sent these to me, and I went there, copied some of the information out, and set it aside. One Friday night, I could not sleep, so I grabbed the papers I printed out and started to read, I read about the EFA study, and was so excited..could this be for real? I read several pages, and ordered the Pro-Efa at 3 am. By Tuesday the Pro-Efa had arrived. I started giving it to her, and the very next day I saw changes in her speech, but the behavior was still horrible. After about two weeks the behavior improved, Fridays were not so bad, she actually started doing things asked of her. Her speech had jumped from 65 words to over 200, in just a month or so of taking this. I have a new daughter now, she likes to help me, she cooperates with both therapists, she does not mind doing therapy, she accepts it now. She tries to repeat words when asked. I am so thankful for this, and only wish I would have found it sooner! She went from 5 words to 65 words in about 2 years, and in two months with Pro-Efa she has gained around 135 words, big improvement. She is now fun to be around, and she wants to help, and I honestly can say it is the Pro-Efa that has helped.