Living with Childhood Apraxia of Speech

photo (3)Glory to God for all things!
As some of you may remember, my son has Childhood Apraxia of Speech (CAS), a neurological disorder that affects his ability to speak. Essentially, the brain has trouble coordinating with the muscles in his mouth to form sounds, much less words. I wrote a little about this back in May (http://tinyurl.com/n577v65

). It was very much rushed and at the time hard for me to write. So this update will be more thought out, less emotional.

We had some inclinations that S. had speech problems when he was two. He made very few sounds; just stuck to the ones he knew: Mama, bye, hi. Those may have been his only words. He grunted a lot, more than a toddler should, I imagine. My wife and I constantly felt like we were failing him; was there something we were doing wrong? Everybody kept telling us that he would come around, that sometimes it just took longer, that their sons didn’t start talking until they were three years old. We even had a Melkite family tell us a story about a young boy who was around at least three different languages in the house, and that he didn’t start talking until he was four. Granted, when he did start talking, it was in full sentences, in the languages to the people who spoke that language. We only speak English in my household, so I knew that was not to be the case. Everybody had great intentions, and really, what do you say to somebody in this situation? God bless them all!

Anyways, my wife started researching S’s speech problems on the internet and eventually came across CAS. Pretty much, a light bulb went off. ‘This is what S has!’ we said to each other. It would take us a while to get S tested through the local school system, and even then, with such limited vocal skills, no formal diagnosis could be given. Rather we were told he had Suspected CAS. Either way, I felt relief, in a sense. At least it wasn’t something we were doing or weren’t doing. With this in hand, we told our families, close friends, and our priest.

Our priest is a wonderful man. He called me soon after he got my email to him and said he wanted to come over to the house and pray for S. A couple of days had gone by before Father came over, and we were given time to acclimate to our situation. When Father did arrive, he said a small healing service for S. and anointed him with oil. Afterwards, Father surprised me; he started asking all sorts of questions. Apparently, he had taken the time to read five articles online that he had found about CAS. Like I said, a wonderful man.

We found a speech therapist that we were seeing for a while and are now currently seeing a wonderful therapist at the local Rite Care Clinic. At times, my wife was taking him to therapy four times a week. S. has gone from being able to say three words at the beginning of the year to saying full sentences and even his name!

If you have taken the time to read the linked post I wrote in May, then you know about my feelings towards St. John Maximovitch and his not wanting to be a bishop due to his own speech impediment. He also is of great importance to my priest and our whole parish. I even informed my wife that I decided Archbishop John is the patron saint for our family. I have been blessed to have been given a small relic of his, and of course I have holy oil from his reliquary. I have also come into possession of a rather beautiful icon of him, painted by hand by a lady from my church. All of these Holy items have a special place in my heart, yes, because they are holy, but also because I have been blessed to have them from the love others.

Now, this has been no cake walk, that is for sure. I am not the most patient man, and I am tested every day because of the CAS. There are still times, almost every day, that I have no idea what S. is saying to me. He can go on and on, but the pronunciation is not there, the words are not there, my patience is not there. Will my son ever be able to talk “normally?” I can honestly say that I do not know. I know from networking CAS groups, that he is not affected to the extent that some children are. Maybe when he is 18, there will be no sign left that he is afflicted with this disorder, but again, I do not know. But, I believe whole heartedly, that without the intercession of Archbishop John, and the prayers offered by my priest, family and friends, along with extensive therapy, S. would still not know how to say his name, or be able to tell my wife and me a story. Or even the best thing of all to ever come out of his mouth, ‘I love you.’

It is the small things like this that have helped me to pray, ‘Lord, I believe, help my unbelief.’ I am sure that this is a common feeling shared by parents of children with disabilities, or illnesses. And as much sadness and tears I experience because of CAS, I can honestly say, that even though I hate it, almost all the time, that I would not ask for it to “just go away.” This is a burden that my family must carry, but it is burden I feel brings us closer to God, and that through Him, ‘I can do all things.’

Advertisements

One thought on “Living with Childhood Apraxia of Speech”

  1. Oh how I understand. My kids have taught me quite a bit. The least of which is not to assume I know how to fix someone else’s “problem” when I’ve never experienced it myself. I’ve had many, many well meaning people tell me how to “fix my children” over the years. My son was diagnosed with CAS when he was 4 from his speech therapist. I used to have to translate my son’s words for everyone else, including my husband. It has been a long road and there’s still more work to be done but people can generally understand him now. He still can’t say the “r” sound but that’s a late one to develop anyway. He generally doesn’t open his lips very wide when he talks even now. But… He went from not being not even a little understandable to generally understandable. He’s 9 now. Keep going!!! Progress is painfully slow but it is happening. I’m going to read St John’s story to my boys! Thank you for sharing.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s