This post is part of an ongoing series of posts from parents. We are so excited to be sharing some thoughts and stories from some Ontario Parents who are deep in the trenches of their child’s CAS journey. While each in a difference place, and in a different location within Ontario, as parents we think you will feel CONNECTED to them, hope it will help SUPPORT you in your journey, and EMPOWER you even further as the strongest advocate for your child. We’d also love to share your story – please write us about how you can help others by sharing your journey. Only by contributing can we all by truly connected.
Sharing Our Story
by Lorrie
I have two children with childhood apraxia of speech (CAS). Both are boys aged 4 and 7. If you had asked me what apraxia was 4.5 years ago, I would have told you that I had no idea the journey I was about to go on with my two boys.
My husband and I have three children, my oldest being a girl of 9 years. We had already been through all the stages of baby and toddler so we knew when our older son was not speaking much by 18 months that we needed to have him assessed. We did not know that this would be the start of our journey with apraxia. It took a couple months to get into Wordplay (our local public speech-language preschool program) for the assessment where it was determined that our son was delayed in speech. Then the waiting lists began. Due to his age, a block of therapy was not recommended right away and we were provided with ideas on what to do at home to help him. He began speech sessions when he was approximately 24-28 months old. We received therapy once a week for 8 week blocks, with breaks from therapy between 5-6 months long. At this stage in our journey, we realized that his public therapy was insufficient and as a result we hired a private speech therapist when he was 3 years old.
The diagnoses of apraxia did not come until Matthew was over 3 and I can remember that day very clearly. It was a shock to the system and as much as I never cry in public, I cried. My mind raced and I had to process what was going on. Once I was able to get home and speak to my husband, I realized I could not sulk in my emotion but rather put that emotion into advocating and figuring out what my son required. From the information I was given at the time, locally, Matthew seemed to be the only one in the area with Apraxia. We then started getting referrals for assessments of fine and gross motor skills, and other available programs that would benefit his learning skills. The waitlists in Sudbury are long, as the programs have very limited space. Once the referrals were sent in, we kept following up periodically until we were satisfied. As I continued on this journey, I realized it was going to be a fight and that all we could do was fight and advocate for what he needed. I read, joined groups and researched everything I could. I also realized that the journey changes all the time and as a parent I needed to adapt quickly and proceed to find the best possible help to move forward. There are many days where things were so frustrating that I thought about hiding and giving up, but seeing my kids always changed that. My biggest frustration was learning that neither our family doctor or paediatrician knew what CAS was either. At each appointment we had educate them; thankfully both were supportive and would also help us navigate and determine what our son needed.
Luckily, by the time Matthew started school, we were able to get supports in place for his learning and for teaching him. This has been beneficial and we keep on top of communication and his education plans so he has what is needed. The school he attends has been helpful, especially when he started his second year and they provided him with an iPad as an educational tool.
After having been on the journey with our first son, by 15 months with our youngest son, we were discovering the same delays. As a result of having gone through this process with Matthew we were very familiar with apraxia and were able to start getting help for Jacob earlier and more quickly; we knew have to navigate the system. This benefitted Jacob as it allowed us to get him into therapy with the Children’s Treatment Centre in Sudbury when school begins in September. He will go to his regular school most of the time, but twice a week in the afternoons he will attend Children’s Treatment Centre for 1-on-1 therapy. This is a huge benefit for him and I feel that pushing and advocating so much has made this happen.
While Matthew only has speech and fine motor issues, Jacob also has gross motor issues which came as a huge shock to us. However, since it was detected earlier, we were able to focus and work with him much sooner than we did with Matthew. Having the experience and knowledge of apraxia already with Matthew resulted to quicker results on Jacob’s assessments and getting him into the correct programs that he desperately needed.
I think my biggest frustration so far in our journey has been the number of road blocks we’ve hit and the length of waitlists we have had to endure for everything from speech to physiotherapy to the disability assessments. Equally frustrating has been actually finding available private therapists who work well with children with motor speech. Luckily, we have had a couple good SLPs.
We have also run into road blocks in regards to research studies. Through genetic testing, we discovered that both boys carry a variant on a gene. At first, we thought ‘great, maybe that is the answer! What happens from here?’ But, road block: the original genetic testing of the gene was completed through the University of Chicago who asked if we would be willing to participate in a research study. But because it is a study, not testing, anyone associated with our local hospital could not be involved due to study’s ethical guidelines and research restrictions. So we are still waiting for someone to draw the blood to allow us to send it to Chicago and participate in the study. I have advocated through the hospital and wrote to the board, but at this point, nothing has happened.
It is unbelievable how much this journey with CAS has become my main focus to each day, making sure that both my boys receive all that they require; that research continues, and that I continue to advocate for apraxia. Locally where we reside, more families are finding out their children also have CAS; myself and another mom have started a support group and my goal is to pass on as much information as I can, and also provide support to families facing the same challenges as us. I continue to this day to carry my binder of all the boys’ information and resources I have collected. My goal in our journey is to see the system change and that kids in similar situations as ours will face less waitlists and receive more programing for motor speech delays.
Matthew is now a 7-year-old boy who is very focused and determined. He is very sports-orientated but his favourite sport is hockey. He makes friends very easily and can be very outgoing. He does not let his speech hold him back and this is what we love about him.
Jacob is now a 4-year-old boy who is very loveable and strong willed. Jacob always has a smile for anyone near him, but he also likes to do things his own way. He does not let any of his disabilities hold him back and his favourite thing to do is ride on his strider. Jacob has currently started swimming lessons with Swim Ability and is growing each time he attends.
I do not know what the outcome will be for my boys or how well they will speak clearly, but my goal for now is to help and support them as much as I can so they can reach their goals and dreams in the future.
Lorrie McGrayne of Northern Ontario, started her journey with childhood apraxia of speech when her son, Matthew was diagnosed with Childhood Apraxia of Speech in 2012. Her second son, Jacob was diagnosed with Childhood Apraxia of Speech in 2015. It has been a continuous journey, seeing improvement with both boys each day. Lorrie continues to advocate for CAS and is always educating herself on apraxia and related issues to help influence change, and also allow her boys to flourish in every possible way.
