Our Stories

Joey

I first heard the word apraxia when my son was 18 months old.  I knew there was something wrong with my son, but could not figure it out. The first private speech therapist we took our son to diagnosed him during his first visit. I went home went on the internet and confirmed that was a perfect description of my son. We spent the next several years trying different therapies while he attended our early intervention preschool program.  He started to make progress with everything but speech.  We next discovered he had sensory integration dsyfunction and his apraxia was global in nature.  When he was 5.9 years old he only had three words he was able to say occassionally: ma, da and again.  We met a therapist during that time that changed our sons life. She said his apraxia was very severe, but she would try to get him to talk. Well in a month she had him repeating many sounds, a month later many words, and by six months talking in short pharses.  He has a long way to go, but he is starting to be able to communicate with words now instead of only grunts. 

We found out just a month ago that our son's apraxia and other developmental delays are being caused by a chromosone abnormality.  He has a small piece of chromosone 5 missing. The doctors say it is not a common deletion and they do not know what the outcome will be, but therapy is the best medicine for him at this time.  So we spend five days a week bringing Joey to therapy, which he loves and try to reinforce the talking at home.

We have had our share of struggles, but the hardest has been with the school systems.  They just do not understand the severity of Joey's apraxia and fight us on everything.  We will continue to play advocates for our son for the rest of our lives. We feel so blessed to have such a loving good-natured kid.  He has been through a lot and always has a positive attitude. 

I developed this support group because I have learned so much through the years and wanted to make sure moms of newly diagnosed children have information that I did not when I first started out.