I Cry for my Child with Sensory Processing Disorder

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.

Head high.

9 replies
  1. Jennifer Dawn
    Jennifer Dawn says:

    Thank you for this. We just learned that our youngest son has SPD. I really enjoyed reading about your feelings and a little of your journey. Thanks for sharing your heart. Sweet and encouraging!

    Reply
    • Channe
      Channe says:

      My son has SPD, ADHD, SMD and trichotillomania. Your thoughful post was welcoming and reassuring. It has been very challenging as a mom.

      Reply
  2. KATHY FERA
    KATHY FERA says:

    I truly enjoyed reading your story. What a loving mother you
    are. I suffer from major depression, these stories are so
    encouraging to me. I look forward to hearing about your
    little ones’ school days and his new adventures! Carry on, Mom!

    Reply
  3. Andi
    Andi says:

    If I could hug you I would. Thank you so much for the reminder that I am doing everything I can for my SPD son. You wrote this so beautifully. Thank you!

    Reply
  4. Cher
    Cher says:

    Thank you from the bottom of my heart finally somebody that gets it. My daughter is two and a half and I’ve been fighting for her since she was 2 mths for services. They gave it to her at a year old and we’ve been in early intervention sense. SPD is no joke and it’s unfortunate that the insurance companies want a primary diagnosis when we all know that that can be the primary sure they have autistic traits but doesnt mean they need to be diagnosed also with autism my daughter does a lot of stuff like lining up watching stuff over and over and over again running in circles. She’s never slept through the night one day in her entire life and nap’s pretty much stopped before she was a year old what is a nap people just don’t understand they think your child being bad or just throwing a tantrum they don’t understand the lights bother her the smell the taste going into public places like the mall or a crowded restaurant I knew something was wrong as an infant she’s my number 6 and all my kids were different but never quite like this. I appreciate you sharing your story finally somebody that gets it

    Reply
  5. Jessica
    Jessica says:

    My son is almost 3 and we just found out be has spd its great reading others stories to know I’m not alone. Its hard when people think he is just a bad spoiled kid.

    Reply
  6. Dorinda Contreras
    Dorinda Contreras says:

    Thank you so much for sharing. I really appreciate your thoughts. My son was diagnosed with SPD 3 years ago. Since then we have too been on a journey. Lots of therapy, running to counselors, testing…discovery and working with teachers to get the best done for him. He has since been diagnosed with Anxiety disorder, and the court is still out on mild Asbergers. I appreciated your comment about the Sock God and being thankful and proud when your son can dress himself. Yesterday my son got dress all by himself and I thought I’d just bust with joy. Today he advocated for himself in school and the teacher listened and helped him. He had a victory and I feel so proud of him. Yet sometimes I feel so overwhelmed with trying to help others understand my son so that they will not be too hard on him. I don’t feel like I can enjoy big events because he gets overwhelmed and may pull back…then I have to explain again…Some say my son is willful. This is painful when he is just anxious. Anxiety can look like willfulness….Anyway…I just wanted to thank you for sharing.

    Reply
  7. C
    C says:

    Perfectly said!! It is always nice to hear from other moms who truly understand SPD and how it affects our kids every moment of every day. My 10 year old has SPD and whenever I get overwhelmed with emotions (this especially happens after I drop him off at school–the most challenging place for our SPD kids) and tears are falling as I pray he has a good day…I turn to counting our blessings and thinking about how proud I am of him for marching into school KNOWING how he has to work double as hard as children who don’t have SPD as he is in constant overwhelmed state there. I am so proud of the every day accomplishments that others may take for granted such as brushing his teeth, finding the comfortable socks to make it through the day, yes-wearing the jacket that he hates wearing (he would wear shorts and shirts even in winter if he could), and even just making it through the busy,noisy,bright,overwhelming day of school without a meltdown…to name a few.

    Reply

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