Sometimes being a mom to a SN needs kid makes me feel like an utter and complete failure. T is in one of many regressions in his SPD and it reminds me that I am probably not meeting all of his needs. It’s not that I’m lazy or anything, I just don’t know how to help him. We do listening therapy, we do heavy work and outside playtime, and breathing exercises, and, and, and… Right now it just doesn’t seem like enough.
Today at OT he had little focus, actually licked his OT therapist, something he hasn’t done in half a year, and cried when he had to throw away some used art supplies. Jennifer (his OT) reminded me that he is still far better than he was a year and a half ago, and that these regressions do happen. Usually when there is a growth spurt, or other developmental milestone coming. But it can also be because of a tiny change in routine, or a perceived change in routine.
I know all of this, but my heart still hurts when I see him struggling so much. I still wonder how I can do more, what I’m not doing right, and how it’s all my fault. I also find myself losing my patience with him much more often, and the raising of my voice sends him into a sensory tailspin that can ruin an entire day’s work. It’s exhausting, and times like this I wonder what it would feel like to have a neurotypical child.
Then comes even more guilt, I would never, ever trade my son. He is a bright, sweet, loving boy. He has eyes that melt your heart, and a smile so contagious that it can make me smile even on my darkest days. But I can’t help but wonder what he would be like if he didn’t have SPD? I am sitting here trying to imagine it, and I can’t even come up with a possibility. It’s just not in the realm of my imagination anymore. I see children who are neurotypical who sit still at a table, who don’t cover their eyes every time the sun is out, who don’t crash into their friends, family and especially not walls. I see them, and I can’t even picture T the same way. Maybe it’s because I’ve come to realize that T will never be that child. He will always have to work harder to keep his body under control, to fight impulses constantly, and he will always have to work harder than his peers to make friends . I have accepted this, but when there are regressions like he’s going through now, it makes me so sad.
What do I wish? I wish I was different. I wish that I could see the progress that he’s made in 1.5 years of OT instead of getting so stuck on the back slides. I wish I could see these times as normal, and know that we will come out the other end further ahead than ever. I wish I was stronger, and that I believed in myself as his mother more. I wish so many things. But I have never wished that T was anyone but who he is, and today, that is my victory.
Comments
Joyce
I know it sounds a bit cliche, but it does get better. Time does make a huge difference.
SPD also have such a loving heart and such personality that brings joy to so many people. Can I share a story from last weekend.
Where we attend church, a young father has just died. Last Sunday his wife and her brother sat near us, but my son was expecting a niece to sit there as they usually do, so he called out in anger that the brother sat there. I tried to hush him – you know when its too late. I felt so bad that he wasnt welcome. But over the course of the service, he began to loose that annoyance over the brother sitting there, as he decided it was his (soccer) coach.
On the day of the funeral I approached this man and told him that Ry thought he looked like his coach. I also apologized for my son’s reaction. And his reply was – “oh he made my day, he is such a cute kid!!!” Two days after this young father and husband and brother in law (to this man) died, my son brought smiles to so many faces around us in church.
So yes he can be so annoying and behaviourly we have so far to go, and it feels like such a step backwards and we are also in the process of trying to get funding for school (at funding time everyone has to say how bad your child is!!) … but despite all that my cheerful loving dear son made a grieving family smile. That is his gift to the world, a gift I believe is increased and more evident because of SPD.
Im not sure if that helps, but I find reading lots of blogs and hearing from other people’s lives really helps me know I am not alone. You will wake again tomorrow and try again, knowing that you really love your son and want to be the best parent you can. And we will all cheer you on from the sidelines, with our bouncing happy smiling ever-loving children beside us. They are our gift.
Beth C.
Thank you for sharing your story with me. T also can make the saddest, grumpiest person smile just like that. Sometimes I forget about this unique ability of his, thank you for reminding me.
Beth
BeckyH_253
Something I did recently was to make a list of the skills I know my son has now. I didn’t worry about the skills yet to come, just wanted to see what skills I could come up with that he has down pretty solid. Then, I looked over the list and realized that most of those skills were *not* there 3 years ago. 3 years is a long time, but he’s come a long way, and it was so encouraging to look at that list and see where he’s been and where we are. And then to imagine where he might be in 3 more years. (And I didn’t allow myself to dream too lofty, but to hope to be able to add a few more things to the list over the next 3 years.) Really, I hope he exceeds my hopes for the next 3 years & I’m sure he will. But sometimes just looking back at where he’s come from, helps in being ok in the moment. Hugs to you & him!! Thank you for sharing with us – sounds SOOOO much like my son!!
Beth C.
Great idea Becky! We just got his evaluation after 18 months in OT and it is pretty good to see the progress T has made. I’m trying not to dwell on the things that have gotten worse, or haven’t improved at all, and focus on the several places he’s made great strides.
Heather Finnegan
Blunt and honest-yep my son does that too. Today I was the worst mother on Earth because I tried to make him go outside. It’s 65 degrees and sunny here. He threw a HUGE fit and I ended up not fighting him on it
I know he would have benefited from it, but I am sick with severe respiratory allergies and a head cold 
There are many times I wish things didn’t have to come so hard for him, and me too. But I have come to realize that I become more compassionate when I go through trials, so I pray that is what my son will learn too!
I also take heart in knowing that I love my son, and do the best I can each day. I know from all of the stories I read here there are lots mommies and daddies that do the same!
Beth C.
There are so many times when the fight just isn’t worth it, especially when you’re ill. Hope you’re feeling better!
Tiffany
It’s always hard during those periods of backsliding. I am always amazed at how I forget that almost everytime my son seems to be regressing, it is followed by some amazing gain. It happens almost every time but, in the moment, all I can see is the negative. Maybe if it were more consistent I’d start getting used to it. Funny how I work so hard to give him consistency while he gives me none!
We all have times when we wonder what “normal” would look like. It’s human nature. We can’t beat ourselves up over it. We can just move forward, enjoying the good days when we get them and loving our kids for who they are right now.
You are doing a great job!
Beth C.
Thank you, I try to go with the flow and accept our normal. Most times I even kind of love our normal. But you’re right, it’s easier during those times when OT is going well and progress is being made.
Joyce
My definition of SPD (tongue in cheek of course) is that the most consistent thing about our kids in their inconsistency.
Beth C.
I love this!