As part of the ongoing need to create Apraxia Awareness, Mary from the iMums shares her daughter’s journey with Apraxia.
My daughter has always been in a hurry to do everything. She arrived 5 weeks early, raring to go. She has 2 brothers – her twin brother and a big brother who is 3 1/2 years older, and she hit every milestone earlier than the boys. She rolled over, crawled, and walked earlier. There was however one exception to her racing ahead, and that was talking. At twelve months of age her big brother had five words and a whole repertoire of animal noises, but neither of the twins had a single word or animal noise, nothing. Everyone said, don’t worry twins always talk late, but by fifteen months there were still no words, and we were starting to get worried, so we got a referral to Early Intervention.
After all the paperwork was done she started Early Intervention at 18 months and got her first words the week before we started – mama and ta-ta (thank you). She was in a small group speech therapy class with three other children for 3 hours a week, and had an hour individual speech therapy each week too. Her twin brother was getting the same therapy and his speech started to improve, but her’s was lagging more and more behind. As time passed she did start to make some word approximations, but she really struggled to imitate speech, had very limited speech sounds she could make, and was very hard to understand. When she was two and a half, a friend recommended the book “The Late Talker” by Lisa Geng, and as I read it I thought – that sounds so like her. This was the first time I had really heard of Apraxia, and the description sounded just like her. I began talking to her Speech Language Pathologist (SLP) about Apraxia, and she said that she suspected it, but that we would need a specialist to confirm. We saw a Developmental Pediatrician with a special interest in Apraxia when she was 2y 9m, and she was diagnosed with “suspected Childhood Apraxia of Speech” which was confirmed at her next visit. (It can be hard to diagnose before the age of three.) Childhood Apraxia of Speech (CAS) can also be diagnosed by an SLP with expertise in that area, but in our case a Developmental Pediatrician diagnosed her. Her SLP tested her her speech and language at this point and her Expressive Language (what should could say) was at the level of a twelve month old, even though her Language Comprehension (what she could understand) was much closer to her age level.
At 3 years old she had already been receiving 4 hours of speech therapy a week for a year and a half, and although she had made significant progress most people, including her own dad still couldn’t understand most of what she was saying. .She mainly used CV (such as “ba” for ball) and CVCV words (“baba” for brother), and used grunting and gestures for a lot of her communication. When she did use words she missed out both initial and final consonants, and made frequent inconsistent errors – she could say the same word three times and it would come out differently every time! By this time I had become her personal translator; within context and by studying her body language, signs and facial expressions, I could understand a lot of what she wanted to say even when no one else could. Funny thing was she never got frustrated with other people when they couldn’t understand her, but she would get totally distraught if I couldn’t understand.
When she was diagnosed with CAS her developmental pediatrician recommended at least 4x a week individual Speech Therapy, plus frequent at home therapy. Like many families we found our health insurance didn’t cover any Speech Therapy at all, despite the severity of her disability, our policy even specifically names Apraxia as not covered. This really needs to change – these children don’t just “grow out of it”, it’s a neurological condition and without intensive early therapy they can remain non-verbal for life. Early Intervention provides speech therapy until age three, and then we applied to our local school district. After a bit of a battle the school district agreed to provide 30 minutes of speech therapy three times a week, and we decided to supplement that by doing daily speech therapy practice at home.
We were lucky enough to meet an excellent speech therapist through our school district, we first saw her for summer speech therapy and she has been her therapist ever since. My girl loves “Teacher Ben” (her nickname – she can’t pronounce her real name), which really helps in getting her to co-operate for therapy. Teacher Ben also sends homework each week for us to do our daily practice at home. The homework has never been a favored activity for Niamh, so getting her to do it early on was a real struggle, as our developmental pediatrician put it “learning to talk is the hardest thing in the world for her, of course she doesn’t like to practice it”.
CASANA (Childhood Apraxia of Speech Association North America) has been a great resource for us, I found their website Apraxia-kids, and joined their LIST-Serv 3 1/2 years ago. I heard parents on the LIST-Serv talking about using iPads with their children with CAS and decided to get one to use with Niamh in early 2011. I started researching apps and using them to do our speech homework, and it made a huge difference to Niamh’s interest and willingness to do her home speech therapy practice. Suddenly it was no longer such a fight and we could do our home practice much more easily. I started using more and more apps with her and began reviewing them for The iMums, and I’m very honored to be speaking about Tablets and Apps for Home use in Children with Apraxia at the CASANA Annual conference in Denver this July.
Fast forward to now, Niamh turned six a week ago, and her teacher said to me in a recent parent teacher conference “I hate to complain about this given Niamh’s history, but she is a little chatterbox, she is so busy talking to her neighbors that sometimes it is hard for her to get her work done”. Those were words I never thought I would hear! She has had to work really hard to get this far, she has had 4 1/2 years of speech therapy and spent hundreds if not thousands of hours practicing at home, she has to work so hard for every little gain, but always keeps a smile on her face. Niamh still has articulation errors, and as her speech improves we are discovering language issues too- grammar that is simple for most children to learn is very hard for her. Our journey with Apraxia isn’t over, but there is light at the end of the tunnel.
Niamh is one face of Apraxia, but Apraxia does not define her. Funny, friendly, hardworking, persistent, determined, outgoing, adventurous, energetic, sociable, loving and caring, those are just some of the words that define her. Every child deserves a voice.
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