My 4yo has Sensory Processing Disorder (SPD), his life is drastically different from other children who do not have the disorder, yet he is currently unaware of this. He starts school in a few weeks and I know soon he will start to realise he is a little different from the majority of his peers. I am determined that he will celebrate his differences and not let them chip away at his self esteem.
When I think about him starting school my eyes well with tears. Sad tears. I am scared. Scared for him, scared about him going into a world where people don’t know about or understand his little quirks, his thought processes, his dislikes, his triggers, or how his little mind works. It has taken me such a long time to figure out how to avoid a big proportion of meltdowns, and how to calm him when his anxiety is in overdrive – I’m his momma, it’s my job. BUT, I won’t be there for almost 7 hours of his day, and that thought rips apart my heart. As I write this the tears are streaming down my cheeks, but I know I need to write this and let other parents know they are not alone in their worries.
I often have a little cry about my sons SPD, not as much as I used to. I sometimes get overwhelmed with how much his life is effected. My heart aches for him. I see how much he wants to do things but his little mind just will not let him take that leap.
I see how much he wants to go on the big wavy slides with his brother, but he can’t sit in the scratchy tweed sack, that stops you getting hurt, because it looks itchy and doesn’t feel nice.
I see how much anxiety it causes him when he knows he has to have his nails clipped.
I see how brave he has to be to try out a new food, it’s not simply a case of putting it in his mouth, I see the fear, but I do also see his courage.
I watch him set up his toys into neat, symmetrical scenes, but never play with them, and I watch his little spirit crumple as someone else decides to play with them because he cannot bring himself to. My heart feels saddened.
I feel sad that his little mind has to verbally process his day for 90 minutes before he can attempt sleep. I long for this little boy of mine to be able to relax, and turn off his tornado mind.
I watch him get carried away in role-play and constantly be a state of make-believe, I worry people won’t understand it’s his way of playing.
I worry other people won’t understand how obsessed he is with Lego, every waking moment is filled with Lego, Lego movies, Lego sets, Lego, Lego, Lego. He doesn’t understand not everyone loves Lego like he does.
My heart breaks seeing how his anxiety is in overdrive regarding using unfamiliar toilets. I hate that he would rather be in immense pain then use one, and that he has no control over this. His brain will not let him use a public toilet. His heart races. SPD sucks!
I worry, I worry a lot, too much, but it goes with the territory I guess.
Sometimes I cry because I am happy, happy that my boy conquered a fear; letting go of me in the pool, trying a previously loathed food, sitting on a not-so-clean stool, going to sleep within 10 minutes instead of the usual 90, holding someone s hand other than mommas, having a band-aid on a cut, using an unfamiliar toilet, using his words to explain a worry instead of having a meltdown etc.
Sometimes I cry because my heart aches for him to be ‘normal’. It is very hard to accept that he will never have a life that is normal by society’s definition, but I have learnt to accept that it is normal by his definition. He is normal, a new normal. This is his journey, our journey, and I will support him along every step of the way.
Sometimes I look at other children who don’t have SPD and, for a second, sometimes I wish my son was like them, without a care in the world, happy and care-free, but then I give myself a big slap around the face. How dare I wish for anything different?! I am blessed beyond measure to be gifted this little boy to cherish and help grow into a fine young man, and I will do the best job I can. My boy, my family, our story, is unique to us and we will write it how we see fit. Life is too short to sit wondering about milestones and all the ifs-and-buts in the world won’t change the facts surrounding me.
Mommas, it’s ok to cry. It’s ok to cry because you’re sad, or because you’re heart breaks seeing the struggles of your child with SPD, it’s ok to fear the future, it’s ok to be worried, BUT it’s not ok to stay in Cryville for more than a minute or two. We all need to visit there sometimes, and it’s part of the acceptance process, but it’s not a destination, not even a short term holiday spot. It is your job to fill your child’s self-esteem bucket to overflowing, and wallowing in self-pity or sympathy-pity will not allow for that to happen. You have to be brave, courageous, and champion your new version of normal.
Pick up on every positive, and work around all the negatives. We now have a plastic bottle for public toilet situations, and it has worked wonders! And school? Well, one day at a time. I could sit here worrying about all the what-ifs and whens but in reality nothing will change by worrying about it. If I spend my time worrying about the new school chances are my child is going to pick up on it, and hell will freeze over before I let that happen. I am a momma bear who will protect her cubs no matter what, and that means I must never let my child with SPD think I feel sorry for him. I don’t. He doesn’t need pity. He needs a cheerleader, a supporter, a coach, a mentor, and as many cuddles as he likes.
I am not going to worry if he will make new friends, I am going to send him to school to be a friend, to look for the kids who have nobody. I am not going to worry if people will be kind to him, I am going to send him to school to be kind. I am not going to worry if people will speak nicely to him, I am going to send him to school knowing that he needs to speak nice to others. Work on everything from a positive point of view, it’ll help your child and you so much more.
So, mommas, don’t feel guilty for crying, there is a lot of therapy in tears, but don’t linger there, pick up your sword and keep on fighting. I know it’s lonely, but you are not alone, remember that.