Everyone wants their child to be "perfect".
When Jocelyn was a very little baby I started to worry that something may be wrong with her when she wasn't babbling when all the textbooks said she should be starting. Knowing that I'm an over-worrier sometimes, I just told myself that she was just developing slower in that area while she worked on other areas of development and that I was just worrying a little too much. I tried not to worry as much. Eventually she started babbling and I kind of let go of the worry. The worry began again when she wasn't saying her first words around the time she should have been doing so. I talked with her doctors and always heard the same thing--that children develop at their own speed and Jocelyn would catch up. I shouldn't worry until she is older. At her 18 month check-up I was the most worried I had ever been. My gut just told me something was wrong and I really had a discussion with her doctor about it. I was told once again that I shouldn't worry just yet. Give her until she is 2, but I just didn't feel right about it. My Mother's intuition wouldn't let go of the worry. I called the Alliance for Infants and Toddlers and set up an evaluation when Jocelyn was about 20 months old. The evaluation determined that Jocelyn was normal in all areas of development except for expressive language and she was diagnosed with an expressive language delay. I felt validated although I didn't want something to be "wrong" with my child. Jocelyn began receiving speech therapy in our home every other week for one hour. She made progress, but I saw the progress as a natural progress rather than any progress that was resulting from the speech therapy. I just started feeling like she wasn't getting all that she needed and I once again started to worry.
At Jocelyn's 2-year check up I spoke to the doctor again about my worries. Once again, I was told to hold off for a little while longer. She told me that if more people couldn't understand her speech by the time she was 2.5 , I should bring her back. I knew I would be bringing her back. Jocelyn has an amazing vocabulary. She can say lots of words. She understands everything anyone says to her. She talks all the time. The problem is that she leaves sounds out of words. Most of her words consist of only the last syllable sound. I can understand her 80% of the time, but I'm her mom and I'm with her all day everyday. People who are not with her a lot cannot understand her. They can probably understand her about 25% of the time. It breaks my heart. Jocelyn is very outgoing, enjoys being around a lot of people, including children. As the other children develop, she is kind of stuck behind. Children much younger than her can speak much better than her. They can't understand her when she tries to talk to them, and that causes some children to avoid her--especially those that are older than her. For now it's kind of OK. People still look at her as a baby, but as she gets older I'm afraid that she will be avoided more and it will effect her self esteem. I don't want her to change. I don't want her to become an introvert because she realizes she cannot speak to others.
The wait from 2 years to 2.5 so that her doctor would finally write a prescription for more evaluations was long. Finally, I took her back to the doctor, got the prescriptions, and she had her evaluation at Children's hospital yesterday. I was blindsided by the results. She was diagnosed with Speech Apraxia. I knew something was wrong, but I was stuck thinking that it was just a delay. I had researched apraxia in my early stages of worry back when Jocelyn was 20 months old, but her speech therapist told me that I didn't need to worry about that--she didn't show the signs. I forgot about it. When I heard the clinician say the word 'apraxia' yesterday I slowly freaked out inside my own head. I took this definition from http://www.apraxiaresearch.com/understanding-apraxia :
Apraxia is a neurogenic impairment involving planning, executing, and sequencing motor movements. The National Institute of Health defines apraxia as a disorder of the nervous system.
Apraxia is perhaps the most misunderstood of all the speech disorders. Verbal apraxia is a neurological motor speech impairment that involves a breakdown in the transmission of messages from the brain to the muscles in the jaw, cheeks, lips, tongue and palate that facilitate speech. There is no obvious weakness in these muscles and a child may well be able to move them quite happily when not trying to speak. Apraxic children, who are usually seen as "just late talkers" when young, are able to comprehend language at an age appropriate level, however have difficulty expressing themselves using speech. With apraxia, a child knows what he or she wants to say but there is a road block obstructing the signal from the brain to the mouth. For any child with a speech disorder, but especially with apraxia, the earlier therapy is begun, the better the results for your child and his or her social-emotional development.
Apraxia has a range from mild to severe. Jocelyn's case is mild, which is good. The clinician told me that it can be corrected with therapy and she will be able to communicate proficiently in the future. She will need intensive therapy. This means I will have to take her for speech 2 times a week, and from what I have read online, the therapy will be for at least 2 years. She will receive a special type of treatment that is used for Apraxia. In reading about Apraxia, it really seems that Jocelyn fits the profile. There are descriptions in the definition and explainations of apraxia that I have explained to doctors as Jocelyn's symptoms. Once again I am validated when so many people told me not to worry, and thank God I listened to my gut rather than others. Getting her help now is the best thing for her. She is still so young and hopefully that will help her treatment be easier than if she started later.Still, I am sad. I don't want anything to be wrong with Jocelyn. Especially something neurological. It makes me sad that she understands everything people say to her, and knows what she wants to say, but just can't get the words out appropriately. I don't want her to struggle with anything. I don't want this to change her happy, outgoing personality, which is what I fear will happen as she gets older and she starts to realize that something is wrong. I don't want other children to isolate her. I don't want others to look at her and think something is wrong with her. I'm staying positive, though. It's early. Maybe she will respond to treatment quickly and this will get corrected fast. She loves going places and doing things and I know she will enjoy the therapy and the company of the therapist. She's a really smart girl, so I'm not worried that she's not going to respond to treatment. I just want it to be easy for her. Isn't that what all parents want for their children?
Todd has reminded me that this is not the worst thing that could ever happen. There are children out there that are dealing with things that threaten their lives. This can be corrected. In the mean time, I guess there is just going to be an adjustment period for me. I have to come to terms with the fact that Jocelyn has Apraxia. She has a road ahead of her that we will help her navigate and we will get through this together!
