Today is Apraxia Awareness Day!
I have rather personal reasons for sharing with you about Apraxia and it is fitting that since it is awareness day, I share with you our story. Recently my Mr 2, Hman has been diagnosed with Childhood Apraxia of Speech and that has been confirmed by two speech pathologists.
Initially when I was told just a few weeks ago, I felt a weight lift. Finally we were getting some acknowledgement that there is an issue, the relief that I was finally being heard and that perhaps now my child would get the support that would help him was my first reaction. See, I had never heard of Apraxia before, I had no understanding of the complexities of it and what it meant/means for my child, my family and myself. I didn't understand just what a challenge this condition will be for my precious boy and as I learn more, read more, reach out more I am overwhelmed, both with fear and with hope!
I am new to the Apraxia world and I am still learning. I am frightened and worried for my boy but also determined that with hard work he will find his voice. I will attempt to explain it as simply as I can and share our journey so far.
So, what is Apraxia?
Apraxia is a motor planning speech disorder. When talking the movements of breathing, the tongue, the lips and the jaw are extremely precise and rapid. They need to be executed smoothly and consistently. For most children this is automatic. For children with Apraxia this process is disturbed, they know what they want to say but there is a breakdown between the brain and the speech mechanisms. Children with Apraxia think, have ideas, opinions, thoughts, needs and wants, just like everyone else, however they can't express these through speech. I cannot begin to imagine how incredibly frustrating this would be. It breaks my heart for my boy and I can see him trying with all he has to get his message across. He has developed a great set of non verbal communication tools to help him with this and people often comment on how expressive his face is!
If you would like to read more about what is Childhood Apraxia of Speech, here are some good links.
I found this blog extremely helpful also,
What are the signs?
I knew something was up from very early on, within his first year. I didn't know what, I had no idea of Apraxia. Every health care professional from GP's to child health nurses, paediatricians and even neurologists kept telling me, give him time, boys are usually slower, I wouldn't be concerned yet etc, etc, etc. You see his big sister was an amazing talker from very early on. Her speech was wildly impressive and developed remarkably quickly. I told myself that I just had very high expectations, that perhaps he was just being 'lazy' and when he was ready he'd take off. Even though I tried to ignore my concerns by telling myself these things the more time went on the more I knew something wasn't right.
For us these were our 'red flags'
As a very young baby, between 6-9months he would make sounds like daddaddad one time then we never heard them again.
He had very limited range of these babbling sounds that were mainly vowel sounds, never two sounds together like babababebe.
We thought we heard him attempt a word like ball or car but we never heard it again.
I tried many, many different ways to get him to make a range of sounds and he never copied. For example, animal sounds, clicking tongue, raspberries, shhhhhhhing etc. I tried stories, songs, activities (some of which you will find on this blog) all sorts for months and months on end with no progress
He was a very quiet baby and is still, at 28 months, my very quiet little boy.
By 17 months he had no words at all and was still rather silent.
He didn't walk till 17 months and not controlled till 18months where he continued to be highly clumsy. He was diagnosed with low muscle tone and hyper mobility.
When he really wants to say something often only a 'sssssss' sound will come out.
Our story
At 17 months he had an appointment with our neurologist for a prior neurological condition, PTU. Hman has also previously been diagnosed with low muscle tone and hyper mobility. At this appointment I put my foot down (and I had to really, really put my foot down and demand) a referral to a speech pathologist. I was urged to wait till he was 2 as he may just be a late bloomer, but I insisted!! Oh how I hoped that he was just a late bloomer and I tried to believe it and wanted to believe it! While we were on the wait list to see the speech specialist I set about doing as much as I could for my boy. I had his hearing tested and results showed middle ear dysfunction which was getting worse and so he had grommets inserted. This was meant to be our magical cure. I had heard and read all these wonderful stories of little ones with speech delay that started talking just days to weeks after the procedure!! Oh how I couldn't wait for that!! It never happened, he remained as silent as ever. His speech assessment finally came round and his results for expressive language were very poor. He began therapy immediately. After four months of therapy and at just 26months of age his therapist confirmed that her suspicion of a motor planning problem was likely what we were facing. An assessment by a second therapist confirmed Childhood Apraxia of Speech.
What causes it? Why...
Childhood Apraxia of speech is a neurological condition. From what I have read and from what has been explained to me, is that nothing I or anyone has done or hasn't done can cause Apraxia. It may have been caused by an illness or infection before, during or after birth. It may be a characteristic from a genetic disorder or it may just be a case of cause unknown. For us it is likely a genetic reason. Both my older children have been diagnosed with Paroxysmal Tonic Upgaze (PTU) which is also a rather unknown neurological condition. Harrison presented with PTU symptoms at 10months of age. His EEG results came back all clear and as his big sister had been through it all and he was presenting the same he was spared further testing, You can read about our PTU journey with Miss M here, http://playingandlearningbeginsathome.blogspot.com.au/2012/11/paroxsymal-tonic-upgaze-our-story.html
We have already been told that genetically something is going on so no doubt this is where his CAS has come from. We will know more when we see his neurologist in a months time and ask some more questions. Our concern for our third child (Bubba, 9months) is also weighing on our minds. The guilt of being genetically responsible for passing on these conditions is unbearable at the moment. I know I couldn't do anything to change it and I know in the scheme of things we are so very lucky, it could be so much worse. I know in time I will let that go.
So what now?
What can be done? Is it curable? What should I do? Where should I go? How much? What if? What if? What if? I am still answering these questions and for every question answered a new one pops up. I have been reassured that these children can learn to speak and can catch up to their peers in some cases, not all. However with early (and we did pick it up very early) intervention, highly intensive therapy and lots and lots and lots of support, encouragement and guidance by all around them, they stand a fighting chance. And we will fight! We wont give up! It is common for children with Apraxia to also have delays with gross motor and fine motor skills. Currently Hman sees a highly trained and experienced speech therapist weekly. She is helping us learn Makaton so he has a way of communicating with us. She is also using the PROMPT approach with him which is very exciting. He sees an Occupational therapist regularly and a physio therapist also. His appointments are very expensive and it is recommended he has speech at least 2-3 times a week which is financially out of reach for us at the moment. However, they each give us many things to work on at home. It means I have to be there for my boy, I want to be there and I will be. I hope to share with you some of the strategies I learn and use in the future. We are also looking into special learning centres that will be able to cater to his needs and understand the support he will require. We want the very best for him, he is so incredibly worth it!!
Remember
A child with Apraxia understands everything and knows what they want to say they just need the help and time to find their voice.
By Sharing our story we hope to build awareness of this little known condition and what these special children go through. Building awareness leads to more funding for resources and support services, which would so greatly benefit families like ours. I also hope to give you a better understanding of what it might be like for an Apraxia child and their family so you can be a greater support to them.
I love hearing your stories so please feel free to share them with me in the comments below.
If you are a blogger with an Apraxia story and would like to link up, or if you would like to read more stories about Apraxia please check out this link there are some great blogs out there I am only discovering myself
Thank you,
Katey
x
S
