To the mum of the child with sensory processing disorder

To The Mum Of The Child With SPD

I am not writing this post to plaster my private life all over the world wide web. I respect my children’s rights to privacy. I’m their biggest protector, believe me. I cannot, however, get rid of this message I feel compelled to share. It has taken all of my courage to write this, so if you read it please know it was hard to hit the publish button for so many reasons.

I have learnt to follow my gut instinct over the last five years and it’s never failed me yet. Over the last 15 months my gut has been telling me that my 4yo may not be as high maintenance as I thought, and that it runs a lot deeper than just being a sensitive soul. Maybe my gut has been telling me a lot longer than that, but I was in denial.

That’s the thing about the term ‘special needs’ – you are accepting of everybody else’s children under that definition,  as long as it’s not your own children. I guess you don’t want to accept that life is never going to be normal by society’s standards and normal milestones standards. It’s hard to embrace it.

Having a child with additional needs, with or without a diagnosis, is a hard pill to swallow. Not many people will admit that. But it’s true. You go through a grieving period. You think of everything that cannot be done, the places you can’t go, the milestones that may never be reached. You worry about bullies and stigma. You fret about the future. I’m not sure this grieving period has a time-scale either, so you’re stuck there as long as you allow yourself to be. We allow our thinking to pave the future in our subconscious. We make excuses in public. We feel awkward. We apologise, a lot.

I admit I struggled when I realised my child may have Sensory Processing Disorder (SPD) and some autistic traits. My child? No, not my child; yet he ticked every box! Things started to make sense. He wasn’t just sensitive, he was overloaded and couldn’t cope. They weren’t tantrums 40 times a day, they were meltdowns from sensory overload. He wasn’t sniffing everything just because. He wasn’t repeating everything to be rude, it was echolalia. He wasn’t being awkward about his clothes being just right. He wasn’t being naughty when he had a screaming fit because plans changed. He wasn’t being silly about refusing his nails being cut. He wasn’t just sensitive when smells made him cry. He was overloaded. His senses are literally in control (or out of control) of his every thought. This breaks my heart. I cannot fix it. His momma cannot fix it.

How as a momma did I not know something was wrong? I’d have done things so differently. I would have been more patient. I wouldn’t have made him have time-out for every meltdown that occurred. I wouldn’t have yelled when he wouldn’t try a new recipe. I wouldn’t tell him he was rude when he wouldn’t acknowledge people or say goodbye.  I could kick myself now looking back. How did I not know?! But life is too short for regrets.

I was in denial for a long time. I was grieving the life I thought I’d lost, but I was wrong. Nothing has changed, except my knowledge and recognition. This is the life we have, my boy has. He’s not defined by a label. His brain may be wired a little differently to the average person, but that doesn’t make him weird or less of a person, and as soon as I excepted that we were able to approach things differently.

When I first began piecing things to together and understanding that my son most likely had SPD I used to cry in private, I used to sob.

I felt like my heart was being torn in two. I think it was part shock and part relief. Shock that my baby, my sweet innocent boy had something wrong, and relief that finally we didn’t have to plod along and struggle our way through each day alone anymore.

I think when our children are diagnosed with disorders we, as parents, are often so worried about the stigma attached to those disorders that we are the ones with the actual problem. We fret so much about what others think that we often do more harm than good. We have to except the circumstances ourselves, and once we do that nothing will hinder our perception of the disorders. We have a huge responsibility as a parent to ensure that our kids childhoods are not something they are going to have to spend the majority of their adulthood recovering from.

After researching SPD I understood more and more about the challenges my boy was facing, and I became prouder by the second for his accomplishments. Daily life is overwhelming for him sometimes, but he tries so hard. Even simple tasks such as getting dressed are a big accomplishment. I find myself begging the Sock God to be kind and not make the seams irritating today, I hold my breath when labels meet skin. The thought of asking to trim his nails sends shudders down my spine. I am constantly holding my breath waiting for the next reaction armed with calming words and cuddles.

I try and be as patient as possible. That is a key factor with SPD. Anxiety levels are already on the edge daily, and an impatient momma will not help. I’d like to say I have perfected this, but that would be lying. Some days I yell. Some days I cry. Some days I feel mentally exhausted. Some days I am a crap mom.

There is not a second goes by that I am not planning the next moves around the sensory needs of my child. It is a never-ending job and my mission is to avoid meltdowns at all costs. Sometimes that means staying home all day, or spending days speaking about upcoming plans, or swapping housework for an afternoon of cuddles. I am never ever too busy for cuddles, ever. Sometimes it even means joining him under the table to eat at a party where he is overwhelmed with all the people.

I fret about going to the mall, to parties, to peoples houses, to new places, but it never stops me going. I do not want my boy growing up feeling ashamed or lonely. I want him to know it’s OK to feel how he does, and that people understand. I want to teach him healthy strategies to cope with his issues.

I want the best for him. And the best is not me denying there is an issue. The best is not me wallowing in self-pity and feeling sorry for him and his future. The best is instilling self worth into him every single day.

I need to remember that he is highly sensitive to the world around him, and that even on calm days he probably feels like a tornado has just buzzed around him.

There are some things that I cannot stand, one of those being veins. Even the word makes me cringe. If I see veins or hear someone talking about them I feel sick, and weird. My boy sees and hears veins every minute of his life, except it’s not veins it is smells, noises, textures, crowds, bright lights. The whirring of the wind, drills, and unfamiliar music are all veins to him. This keeps things in perspective.

SPD wares you out as a momma, but imagine how much more it wears out the child who has it? Momma, your tears won’t change the future, but your perception of SPD will. More patience, more cuddles, less apologies to the public will help. You do not have to justify anything to anybody, and if people question the diagnosis let them. Some disabilities are unseen. Momma knows best.

I hope that me sharing a little of our world with you has helped in some way? It is a lonely road, but I am right there cheering you on!

Keep going, tougher days are most likely ahead, but plod on through the tears, the meltdowns, the aggression, the misconceptions, the brick walls – your kid needs you!

24 replies
  1. Christina @There's Just One Mommy
    Christina @There's Just One Mommy says:

    Thank you for your heart-felt post!
    I have learned, too, that patience really is key. Some days are easier than others. Bedtime is my biggest issue — having the patience when he just can’t fall asleep. Sometimes I forget he isn’t trying to stay awake, he just can’t turn off.

  2. Kirstie Smith
    Kirstie Smith says:

    Well done for ‘getting it out there’. It must be very hard to accept your child has additional needs. By diagnosis you can learn more about your child’s needs and the best ways to help/support/be there for them. Lots of cuddles to both of you.

  3. Janine
    Janine says:

    Mine doesn’t like nails getting cut either. same for the hair. He hates seeing the side of scissors. But every child is like that.
    He also has a lot of tantrums a day. Cries about stuff only though when he doesn’t get his way. Normal too. I hope. He plays like a normal child. Only thing that annoys me is that he doesn’t listen. he just walks/runs off in parks etc and won’t hold hands. If you distract him he will eventually hold hands for a few mins maybe. Bribery works too sometimes. lol

  4. Geraldine
    Geraldine says:

    Absolutely beautiful – had me in tears! Since becoming a mum – I desperately try not to judge kids/parents (I sometimes fail) due to these unseen issues! I suffer with anxiety – which I hope makes me a little more understanding because my problems are unseeable too!
    Big hugs to you Momma Bear – you’re doing an amazing job and your baby bears are very lucky to have you! xxx

  5. Kimberly Cox
    Kimberly Cox says:

    This brought tears to my eyes. I have been trying to read it now since last night and life keeps happening. This morning I was meant to read these words. THANK YOU for reminding me to get out of the “pity party” and teach my sweet SPDer to enjoy life. Is it sad that it has NEVER crossed my mind that I don’t OWE any apologies or explanations for my kids actions? I ALWAYS feel like I NEED to apologize and even NOT attend things where the kids might upset people. It becomes such a mindset and is hard to break out of. THANK YOU for sharing. THANK YOU, THANK YOU, THANK YOU!!!

  6. Kate Longworth
    Kate Longworth says:

    What a beautifully written post. I too have a child with needs I cannot quite work out yet. I often describe it as sensory overload but in a slightly different way to you. It all gets too much for him and he gets amped up and cant calm down or at a kids party he hides behind my chair when the rest of the time he is the loudest one in the room. Thank you for sharing how you are as well – I beat myself up for not being more patient – the health visitors keep saying give it six more months – he seems okay. I just want to know how I could help him.

  7. My Boys And Me
    My Boys And Me says:

    You have written this brilliantly! I felt every word you said. My son too has a bit of SPD along with tourettes and some elements of autism. Putting socks on is a daily battle for us! Accepting your child has something like this and supporting them is the biggest way you can help them. You are going to do your little boy proud. xxx

  8. runswscissors
    runswscissors says:

    So beautifully put. I no longer apologize in public. I help him through, smile and we go about our way. If you meet him where he is and appreciate his struggle, you love him all the more. Thank you for articulating this so incredibly well! You are a beautiful Momma and we protect our cubs at all costs. Stay strong.

  9. Another SPD mommy
    Another SPD mommy says:

    Loved this post, and felt every moment of struggle with you. Mine is almost 12 now and years of sensory exposure/integration and understanding/acceptance from us as parents has brought him a LONG way. It’s frustrating, to say the least, to see him struggle, but as he has grown, we’ve found out when to push his boundaries and when not to so that he doesn’t always miss out. Sometimes it even teaches him how to cope with a new situation. Good luck to you!

  10. Complicated Gorgeousness
    Complicated Gorgeousness says:

    What a great post for so many reasons. SPD – we really, really do hate you. My boy seems to be getting better with age and all the therapeutic inputs but still teeth brushing, feeding etc is a daily battle. We’ve just got to keep putting one foot in front of the other. I hope you find brilliant coping strategies that work for you guys xx

  11. Mooshkie Moo
    Mooshkie Moo says:

    This was such an emotional read. Thanks for pressing that publishing button, I can imagine the turmoil in deciding whether or not to. You’ll help lots of people with this post. I wish you strength and courage through the good and challenging days.

  12. Kylie Thomas
    Kylie Thomas says:

    Hi, Thank you for sharing your experience. I’m in Australia and my son is three and has SPD. Sometimes it’s lonely and hard especially when the simple things bring about so much anxiety for my son. SPD is becoming more recognised in my country but it still is misunderstood or unheard of in most groups. I do find it hard to attend groups and play dates usually end in aggression, frustration and meltdowns. The biggest challenge for us is the lack of sleep he has never slept through the night and always takes ages to fall asleep. Clothing is limited and so is his diet as he often gags on soft textures. We don’t drive to far either as my son gets car sickness on even short trips. I found the book Understanding Your Child’s Sensory Signals helpful along with Creative Discipline Connected Families help (it’s not sensory based but rather provides alternative ideas to discipline that I find fits well with my son as he needs a gentle approach).

  13. Holly
    Holly says:

    Came cross this article at a time that I needed to know I wasn’t alone. Perfectly describes our days and how I feel sometimes. Thank you for taking the time to write and share this. I know how hard it is to share such a personal thing. You always want to protect your kid but you also want to reach out to others and walk alongside them. Thank you for your courage and your heart.

  14. Christina
    Christina says:

    Thank you. Seriously thank you. My son has been recently diagnosed and my eyes have been opened to the SPD world. I fought between thinking I was just parenting him wrong to thinking there was something else going on…. Since infancy. It is lonely and exhausting. I’m hoping now that he is starting therapy we can help life get easier for him. I needed to read this post. This one post provided more encouragement and hope than all of the other blogs I’ve read. I plan on printing it and keeping it around for those days when I start questioning my own sanity. Thank you, again….

  15. Megan
    Megan says:

    Wow, I just found your blog and I love it. I have a 2 year old daughter with SPD and I feel for you with the whole 40 tantrums a day thing! I think the hardest thing was not knowing what was going on and secretly being afraid that it was my fault. It is so nice to connect with other moms that have been there and to know that we’re not alone. Thank you for sharing your story!

  16. Leigh
    Leigh says:

    As a mom of an almost 11-year-old boy with SPD as well as generalized anxiety disorder caused by the SPD…I can relate to all of this. We didn’t even hear about SPD until my son was almost 8 so we did a LOT of things wrong before that time. Since then we’ve learned how to help him cope some and some things he’s matured out of but we still struggle with quite a few issues that I’d give anything to fix for him/us. I commend any parent who deals with extra/special needs children and the tireless love it requires. I feel beat down and like a failure a lot of the time but at the end of the day we are all doing the best we can. I have to tell myself that too. Thank you for sharing your story. I have a desire to blog about our journey if I can help one momma. You inspire me. I just don’t ever want it to have a whiny/complaining tone because that’s how I feel a lot of time. Why us? I don’t feel like I’m where I am help anyone yet but having come through some of the struggles others may be facing, even if I don’t have the magic solution for how we did it, maybe I can be of some encouragement. Rock on, moms and dads! Our kids will thank us some day. ❤️

  17. Christi
    Christi says:

    Oh!!! Thank you!!! I hate the meltdowns and days I fear I cause some. Yes, you think you grieved everything then bam something else rears its ugly head.. Thank you for sharingz

  18. Kirsty
    Kirsty says:

    Amazing post, you’ve described my child. I’d love to know what techniques etc people have had success with helping their children with these needs xx


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