Last week I told a friend and my counselor that I’d choose Apraxia over the other diagnosis any day.
Don’t get me wrong, Apraxia hasn’t been a piece of cake, but Jackson is finally stringing words together and can find ways to get his point across even when he can’t find the words.
But Sensory Processing Disorder (SPD) trickles into every area of our lives.
Its effects are as far reaching as the newborn days when we thought all the screaming was colic induced. Now we know it was more than just an upset tummy.
It’s not Jackson’s inability to speak that’s the hardest; it’s the sensory seeking behavior.
Jackson’s brain doesn’t register the senses the way yours and mine does. When he’s not regulated, he can’t control his little nervous system, which causes unique challenges in our daily life.
I know how frustrating it can be for me; I can’t imagine what it’s like for him. Especially since he can’t always tell me what’s going on.
Sensory Processing Disorder has robbed us of normal.
We say no to playdates.
There’s no trips to play at Chic Filet.
We choose the park with the least amount of people.
I feel guilty making the thousandth peanut butter and jelly sandwich; but you do what you gotta do when it’s one of the only things your kid will eat.
I grieve when he misses out on the normal 4-year-old stuff.
We’re still working on the whole potty training thing.
We have a lot of restless nights because his little body just can’t settle down enough to fall asleep.
I cry when I see his friend coloring inside the lines as he struggles to hold a crayon correctly.
I apologize to the talkative preschooler when he tattles on my son.
I feel guilty for feeling frustrated when he literally can’t help himself.
I feel isolated because you simply can’t understand unless you’ve lived it.
I give bear hugs so he doesn’t accidentally hurt another child.
I throw up silent prayers because I don’t have the energy to mutter them aloud and feel guilty when I don’t.
I allow extra time before leaving the house to make sure he’s regulated.
His life consists of therapy appointment after therapy appointment and a sensory diet to top it all off.
Brushing and compressions, a lot of heavy work, and wearing compression shirts – all ways to ensure he’s regulated and ready for the day.
Because if he isn’t, the day could be a disaster for my little sensory seeker.
He has a hard time sitting still. He touches everything. And he can’t help but get all up in your space.
That tends to cause problems when we’re around a lot of people or crammed into a small waiting room (which happens at least four times a week). So instead of sitting in the waiting room, we wait in our car until it’s time for our appointment. Sometimes I pray we will arrive to an empty waiting room, because it’s easier than dealing with the chaos that ensues when Jackson gets a little too rough, when all he really wants to do is play.
He just wants to be a kid and but SPD often gets in the way.
And that makes me angry and sad.
There’s worry and fear and a million questions: Will he be ready for kindergarten? Will he have friends? Will it always be an uphill battle? Have I failed him?
And there’s weariness because it’s a constant stream of therapy appointments and trying to keep him regulated because his sensory-seeking self just doesn’t stop.
There’s dirty looks from strangers and friends and family who don’t understand.
So yes, I’d choose Apraxia any day.
You’re doing a brave job being present and figuring all this out for him. He’s blessed to have you as his momma. Love you!
Thanks Kristin! Your support, encouragement and prayers always mean so much!
I couldn’t have written this better myself….. I wish I could say it gets easier, but it doesn’t. It will always be a struggle, a balancing act, and sadly judgment from those who just don’t get it. In the end what matters is you are one heck of strong mama. You have NOT failed him. You ARE a constant, reassuring, and loving force to be reckoned with when it comes to your child, and SPD can’t take that away or keep him from feeling that. He knows your love and your faith in him and that is the utmost best thing you can give him. Keep up the great work and know that you are not alone. Prayers and understanding good vibes are with you.
Thank you so much for your sweet encouragement! I really appreciate it coming from a mama that GETS IT! 🙂
This was such a courageous blog and I’m sure God will use your vulnerability to touch someone’s life who is struggling. I think it must be so hard with SPD because people can’t see it and have no idea how much energy it takes from mamma to keep him regulated. You ARE such a loving, amazing, intentional mother….I know you don’t have very much time to yourself, but I think it is crucial to “budget” in fun time for yourself!! You give so much of yourself to God, your son, and your husband that there’s precious little left over for just-Jen-time!! Even as I am typing to make time for yourself, I’m thinking we need a children’s book on SPD 🙂
Powerful post today!!
Ha, ha Shelley! I have considered the children’s book idea, but the exact words haven’t hit me yet. I will keep working on that!
Thank you so much for sharing this! I can’t tell you what an encouragement this is to my momma’s heart. Our little girl (adopted from China 7 months ago) is still not speaking. She can’t even mimic letter sounds. It is so frustrating. Her cognitive levels are completely normal, but she just can’t communicate!
-Sarah (www.sarahefrazer.com)
Sarah – I am so glad you left a comment and I’m so glad you were encouraged by this post. I’m so sorry your daughter isn’t talking. Don’t loose hope! Has she seen a speech therapist? It’s crazy how many kiddos I hear about (and know) who are adopted and have Apraxia. I’m not saying that’s the case for your little girl, but it might be something to look in to. Please feel free to contact me if you have any questions at all. I’d love to help the best I can. My email is jenniferjacksonlinck@gmail.com I will try and find a way to send you an email too, in case you don’t see this response. 🙂
Dear friend, I am so sorry! You have not failed him. You gave him a home and continue to do so. You fight for him daily. And you give him a mother’s love. You are a great mama even on the hard days. Xoxo
Thanks Jamie! I appreciate your kind words!