Today is one of those days I find myself getting frustrated, angry, and sad about the challenges my son with special needs faces on a daily basis. As I sit here even thinking about it, it almost feels like a double edged sword because on one hand my son has significant delays and hardships, yet on the other hand he is healthy. It makes me feel guilty for even complaining about the hard stuff when I know there are parents facing far worse circumstances than ours. At the same time I have to also remind myself that I am human and that the feelings I have are real and that I don’t have to have a child with life threatening circumstances to feel valid. My son has special needs and those needs are life altering.
Last week my son had an extensive speech and language evaluation due to his Speech Apraxia. You’re probably wondering what that is as many people have never heard of Apraxia. Apraxia is a rare, neurologically based, speech disorder that effects a child’s ability to produce intelligible speech. There are different levels of severity ranging from mild-profound- my son’s case is more profound than most and he has been in speech therapy since he was 18 months old, he is now 8. Apraxia is also the most severe of all speech disorders in children. You can learn more about Apraxia by visiting https://www.apraxia-kids.org
In addition to the Apraxia diagnosis, my son also has significant developmental delays, motor dyspraxia, hypotonia, sensory processing disorder (SPD) and mixed expressive and receptive language disorder (MERLD).
Ok, getting back to that speech evaluation because that is what started me writing this piece and forced me to have a glass of wine (or two) in the first place.
No matter how many times I have been through these evaluations and KNOW what the outcome will be, seeing the numbers feels like a kick in the gut every single time! Reading test scores that show my son’s auditory comprehension and expressive communication is equal to a 3.5 year-old when he is 8, just hurts. He has been working SO hard in speech therapy since he was 3. Once again we are reminded (on paper) of how delayed he is and the light at the end of the tunnel is not even close.
It just took me into a downward spiral of sadness. Not for me, but for my little boy. I just want him to be able to learn like other kids his age and be at their level. I want him to have a thought and be able to say it clearly…to be understood! Man, it is so hard to watch your child struggle each and every day. The ability to communicate is something so many of us take for granted. Imagine not being able to share your thoughts? Your likes, dislikes, how your day went, or when someone or something has hurt you?
After reading my son’s evaluation report (all 10 pages) I started to zero in on those scores I mentioned above. I started comparing him to other children I know his age and even other children who are much younger and feeling sad that he is not a “typical” 8 year-old boy. Not a good place to allow your head to be…
Later that night my son grabbed his bedtime prayer book and turned to a page for me to read to him and this is what it said:
“you are one of a kind! In the world you won’t find, another someone like you. You can search high and low, go beyond a rainbow, but there’s no one who smiles like you. It is simple, you see, you are different than me. We’re unique in our own sort of way. The Shepherd chose you. You have something to do- and He’ll guide you along every day”.
I immediately began to cry, but with happy tears. My son chose this prayer and it was absolutely beautiful. It spoke to me, to my heart.
My little boy IS unique. He is perfect in every way! While he may not have the ability to communicate like others can (yet), he has the ability to show how caring he is, how compassionate he is, and how SMART he is. He knew I was sad that day, even though I tried my hardest not to show it, he saw me hurting and he found a way to make me feel better. Tests don’t come close to measuring any of those traits. Tests don’t measure how BIG his hugs are or how they instantly make me smile. Tests don’t measure how concerned he was at the playground the other day when a little girl fell and he ran over to help her. Tests don’t see the smile on his face when he hears our song that we always dance to and grabs my hand for me to pick him up while we dance with him in my arms and his head on my chest. You can’t measure these things because they are immeasurable.
By the end of that night, I was given such a special gift from my son. He reminded me that he is “one-of- a- kind” and he restored my faith that he will be just fine.
Reposted with permission from the author.
Kendra Jenkins is a wife, a mom to one son, a nurse, a volunteer for Apraxia Kids, and a HUGE advocate for children with apraxia and their families. You can follow Kendra’s journey on her blog, www.blessedwiththescenicroute.com