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Kicking It With Kelly

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My Journey Living With A Child With Sensory Processing Disorder

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I am so honored to have you reading this second post in a 4-part series on sensory processing disorder and autism. In this post, I am going to talk about my journey with Henry and living with a child with sensory processing disorder, and please forgive me, but it is lengthy. In my first post, “Does Your Baby Act Differently? Know The Signs Of Sensory Processing Disorder“, I talked about the first 18-24 months in our journey with Henry. Once we had stumbled upon the SPD (Sensory Processing Disorder) and what that meant to our family, we needed to figure out what the next step was going to be. I am not going to lie or sugar coat it; living with a child with sensory processing disorder was really scary and hard and there were days I did not think I could get through one more day. But with time, patience, humor and a lot of love, we persevered and readjusted our definition of what normal was.

Living With A Child With Sensory Processing Disorder



The next step was to find out what parents living with a child with sensory processing disorder do. We found a local support group and they suggested we look into OT (Occupational Therapy.) This was THE BEST THING EVER!! Miss Beth was a Godsend! She was patient, loving and so kind to us. And the therapy room was a kid’s paradise! It had a swing bolted to the ceiling to help with proprioception (balance and knowing where your body is in relation to the ground). It had plastic boxes filled with sand or rice where Henry got to play hide and seek with hidden objects. This helped with his tactical and fine motor skills. Here, we also learned about weighted vests, which helped with Henry feeling grounded as well. This was also a huge calming tool which was used at home A LOT!

SPD

So, those are just a few of the things Miss Beth could do for Henry. But what about when we were at home? I was clueless, overwhelmed and scared crapless! With Chris working full time and Caitlin in school, I was left at home with little complex little guy and I had no idea what I was supposed to do. I quickly found the tire swing at the park was a lot like Miss Beth’s swing and was perfect for when Henry was feeling like he would crawl out of his own skin. The rhythmic jumping on a mini-trampoline helped Henry feel calm when he was acting aggressively. If he felt stressed he would take the pieces out of his Candyland game and line them up. Next he would sort the cards so they were all grouped together. He also loved to put together puzzles. I could take a new 100 piece puzzle, drop the pieces on the floor and Henry would have it put together within 10 minutes.

Henry 1

Henry could also pick a lock in about a minute, which was pretty scary. When we lived in a condo that was pretty near a main street, we had a lock that was close to the top of the door so he could not reach it. One summer day I was in the upstairs bathroom with a bit of a stomach bug. I heard the doorbell ring and did my best to hurry tings along so I could answer it. Imagine my surprise when I opened the door and there was a policeman holding Henry’s hand. Henry had gotten a chair, put some things on the chair to get him to the right height, climbed up and unlatched the lock and went outside for a walk! Yep! Parent of the year award goes too…. Needless to say, we put a bell on the door so that wouldn’t happen again! Oh, and the ticks! Ticks (or stims) help kids with SPD and autism feel calm. Are you seeing a pattern here with the whole calming thing? Right! Everything is about keeping these kids calm! We went through so many ticks. He would whistle, hum, lick his lips until they were chapped and peeling and spin. He could spin like a top and never fall or get dizzy! So crazy, right? He also loved horses, which little did we know, were used for therapy with kids like Henry.

Henry and the horse

As Henry moved from his toddler years to his preschool and elementary school years, more behaviors began to emerge. He became more adamant about how he liked things and NOTHING could sway him once he made up his mind. So many things upset and scared him or just plain did not feel good to him. By this point we had therapy at home as our insurance changed and we had a counselor come to the house twice a month. We learned there was a disconnect from Henry’s brain to his body, like a short circuit. What would happen much of the time is Henry would think or feel something and he would act on it before the thought got all the way to his brain. Sadly, the kids in the neighborhood figured this out and Henry became the local guinea pig for their tricks and mischief. The worst was when they talked him into going to the top of the hill and riding his bike down with “no feet or hands.” That took a chunk out of his head that left a dent.

Henry 2

When it came to the simplest of tasks, a molehill became a mountain quickly. Henry hated to have his hair brushed or washed (still does), he cried when it was time to brush his teeth or take a bath (still hates it), and he hated to be touched or kissed. As a mom, that one hurt the most because I am a huggy and kissy kind of mom! Can you imagine how it feels to try to give your child a kiss and over and over again, they turn from you? When it came to eating, that was another battle we fought 3 times a day. Henry would only eat a few things and trying to change his mind was just not going to happen. He ate mac and cheese, french fries, chicken nuggets (IF I tore the breading off (but he would not eat plain chicken), mashed potatoes, pasta and baby carrots from the can. Fast forward 10 years later and he still pretty much eats the same things.

Honestly, we got to the point where we became hermits because we were terrified to let him go outside. Secretly, I was afraid to be inside alone with him as well. The bigger Henry got, the stronger he became and more defiant as he approached his 6th birthday. I was told when he got anxious or aggressive, to sit on the floor, put Henry in my lap and wrap my arms around him. Well, after a handful of bites on my forearms, I learned to find alternative ways to calm him. For Henry, this came in the form of television and video games. They took Henry to a place of comfort no one else could. And this stay at home mom became that mom who let the television be her child’s babysitter, confidant, best friend and escape from the world he often times hated to be in.

Next week, I am going to share the signs of autism, getting a diagnosis and what happens from there. Until then…..

Comments

  1. One of my really good friends has a son with autism, and the sensory issues have been terrible for him. Thankfully, they found really good help to get him more used to things and help him process.

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  2. I’m so glad I never had to deal with anything like this. I can’t imagine the struggle, and I can’t imagine heartbreaking it must be to see your baby suffering. =/

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  4. Hugs to you, mama!! I love that you are helping get the word out about this disorder! Sometimes the best thing we can do for our children in these cases is to be their voice and advocate! Awareness is key. thank you for sharing your journey! God Bless 🙂

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  6. Interesting post. As a childfree woman, I can’t begin to know what it’s like to deal with anything even close to this. Reading your story has given me a perspective I wouldn’t otherwise have and helps relate to people in my life who are in similar situations with their children. Thank you for sharing this.

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  7. My youngest son is almost exactly the same, so it is really nice to hear that I am not alone.

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  8. Dealing with children who have developmental or processing issues can be difficult not just for the child but also for the family. A good doctor should support the child and the family

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  9. I have a couple of friends who have children with autism. One of them has SPD. He is a teen now, and still my friend’s family has their struggles. Weighted vests helped a lot when he would be anxious. Know that your are not alone. So glad you are in touch with support groups. I have seen how much they helped for tips, support, and even for venting.Hugs!

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  10. My daughter also has SPD. And the hardest thing was to get to a realization that she is NOT like her brothers and to not expect the same results or have the same expectations. Trying to find a new “normal” for her. And set different standards. And also learning how to help her cope with sensory overload. There is a lot that goes into being a parent to a child with SPD. As you well know. It is quite a learning experience. And yes, OT was a heavensend miracle for our daughter!

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  12. My daughters best friend has autism and you described it exactly. Best friend? Actually, she’s about the only one that really knows her, she doesn’t let a lot of people in. Not many at all. I’m happy they found a special friendship, they need each other in so many ways.

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  13. I would panic if my kid unlocked our doors and left. That is literally the scariest thing. I commend you for seeking OT and giving your sensational child everything you have. You are doing it right mama

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  14. I can only imagine how hard, and scary (like you mentioned) mothering a child with sensory processing disorder. My nephew has a minor version of this, and it’s rough taking him out on his own (because I DO want to spend some aunty-nephew time with him as much as possible when I am home). It’s tough!

    It gives me chills to hear your little baby used to be able (or probably still does know how) to pick a lock in under a minute! Holy wow.

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  15. I can’t imagine trying to deal with that. The lock picking would have terrified me. It’s great you’re sharing your story and that perhaps other moms in the same situation won’t feel so alone.

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  16. My youngest had sensory needs as a young baby, it was hard to learn how to help them. Thank you for sharing your story about your struggle.

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  19. I admire the love and appreciation you have for Henry. It must be difficult but its great that you are seeking help and meeting with parents who have the same issues. Please keep sharing

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  20. Henry sounds like an amazing boy and you are a strong mother!! Going thru things like this is so scary and it sounds like you had an amazing support team at the time. Finding ways to help the kids thru this is important.

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  21. Henry sounds very lucky to have a mom like you. We were told my second daughter was going to have problems when I was pregnant. Chel is a breed of her own but nothing like what your dealing with. I am so it gets so hard and lonely, it seems lame for me to say please just reach out if you need us. We bloggers get busy but we also have a bond. Anytime.

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  23. I have 2 boys who are sensitive to some sensory inputs (e.g. light and noise), but thankfully it has been manageable without any intervention. Thanks so much for sharing about an affliction that some people do not even know exists.

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  24. Thank you for sharing your story. It really helps to understand the needs of children with autism. The Sensational Kid chart really explains the variety of behaviors that some kids have. I am so glad that you were able to get support because I’m sure it must be scary to figure out on your own.

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  25. There are so many people who have no idea what it is like to have a child dealing with any kind of challenge. Thank you for educating and sharing this so we can both identify and support others who have deal with this.

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  27. Thank you for sharing your story. You sound like a great mom who is doing the best she can to help her son. There is nothing wrong with letting him sit in front of the tv if that helps calm him down. You do what you have to do, for you and for your child. If that works then do not be hard on yourself.

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  29. You are such an inspiring person, sharing your journey with others.You never know who you are going to help by sharing your techniques.

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  30. Life must be really tough for those people who are not in perfect health condition. However, this might be also a way to prove that even with the child’s sensory disorer, you can remain hopeful and strong to make it through patience and lots of love and care. It’s all about perspective. Hopefully there are more effective ways to stay calm.

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  31. I’ll be passing this on. I have a few friends in my circle with sensory issues in their children and I know they would love the connection.

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  32. It was interesting to read this article. I have a friend whose son was diagnosed with a sensory processing disorder and this will help me understand her family life a little better.

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  33. While I don’t have much experience with Sensory Processing Disorder, I give you kudos for being the mom you are! My friend’s son actually has SPD and she has told me about situations where people assumed that she just doesn’t discipline him or when she’s even been scolded for how he behaved, it’s sad to hear.

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  35. Thank you for sharing your heartwarming and educational post. I can just imagine what it’s like to live with a child with sensory processing disorder. I was not familiar with this syndrome until now, so I really appreciate your article.

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  38. YES!!! I am not the only mother out there. Actually I know there are many more. My son has SPD and severe anxiety with a bit of ADHD. I find myself in the bathroom in tears and surrounded by hopelessness. My son does not have autism and for that I am thankful. We are in the aggressive stage and have been here for over a year. We just came back from a short trip to which I discovered I was not quite prepared for like I thought I was. Its so good to read that there are other mothers who are struggling like I am and who feels the same as I do. Thank you for sharing, I look forward to reading the rest of your posts.

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  39. I do not know if it works for all children, but I have some success if you remove milk and wheat product from the diet. We did that for 16 weeks, and behaviour improved. Every single time we play cheat and sneak in a pizza, behaviours like being dazed, or irritable, public meltdown etc will reoccur for a week! I won’t say its a cure or anything, and if you read around there have been some success just by removing and eating more of certain food. As no 2 kids are alike, its more like a trial by error. Supplements as well as investigating possible allergy, then removing them may help sometimes. But most importantly get in touch with a DAN doctor now. I know the difference between autism and SPD but who cares if therapies work. Its an endless journey, lots of bumps, but our kids need us so we struggle on, hope this information helps somewhat.

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  41. What an inspiring post, filled with meaningful lessons! I related on a few levels – including the sight of that sharing your journey with us.

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  42. Very interesting blog. A lot of blogs I see these days don’t really provide anything that I’m interested in, but I’m most definitely interested in this one. Just thought that I would post and let you know.

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  44. It is possible for children to better adapt to their often uncontrollable surroundings as they grow up, as long as their parents are empathetic, but do not spoil them.

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  45. Our 10-year-old, Loki, was diagnosed with Sensory Processing Disorder when he was 4-1/2 when he started pre-K in California and my sweet, beautiful child became a raving lunatic when I dropped him off for 4 hours a day, but I was very lucky that the pre-K teacher had a little boy 12 years earlier she said that Loki reminded her of almost to a T and she said I needed to have him checked out and we took him to Rady’s Children’s Hospital in San Diego and they did therapy sessions with him and diagnosed him with SPD and tested him for autism, Asperger’s they thought because he would not integrate with children of his own age, only wanted to be with adults and his intelligence testing was through the roof, the kid could spell 3-4 letter words when he was 12 months old and he still is exceptionally bright, but he tested out of the autism scale, he is a SPD stand alone diagnosis only, which from my understanding is the rarest type as most times it has some other underlying diagnosis such as ADD, ADHD or autism, but they think that probably because our little one didn’t cook long enough in mom’s belly that it could have been something related to that, I just don’t think they really know. Our little guy was a 31-week preemie and they say that a lot of children that are born premature have some sort of sensory disorder, but I had never heard of it before our little guy was diagnosed. There was a study done that I had seen by a neurologist a few years ago that eventually led to sensory processing disorder being taken off the autism scale as they linked it to the neurosensory pathways in the brain, so I believe they now diagnose it as a neurological disorder and not as a behavior disorder, but don’t quote me on that one just yet, LOL, it all becomes so overwhelming sometimes and we get headaches from the insurance company because they will not pay for Sensory Processing Disorder as a stand-alone diagnosis, SOOOO you want my child to have some other disorder or problem before you will say he has a problem??? That makes no sense to us, but we all know how insurance companies love to be and our little guy does happen to have some physical developmental delays with his muscles and muscle tone so they are able to diagnose him as developmentally delayed physically with SPD traits and the insurance company covers that diagnosis, go figure. Looking back before he was diagnosed I knew he was different for the longest time, quirky even, lined things up constantly and if one moved out of place, like a car rolled forward out of the line, he would run from all the way across the house to line it back up, not to mention the first year of his life he had a really hard time when the day transitioned to nighttime and it took us about 3 months to finally figure that one out and learned to just keep the sliding glass door closed and curtains drawn, blackout curtains became our favorite real quick. He never liked traditional kids toys, they had to blink lights that were really bright or big bright colors or violently shake, he hated baby songs and lullabies, he listened to metal music and rock n’ roll sometimes at deafening levels and we had to remove the knobs off the players to keep him from turning them up or climbing on them and sitting on the vibrating speaker, which he still does to this day. He tries to talk to kids his age about the music he loves, talking about seeing Slipknot in concert at 2 years old and you should see the looks on the kids face like “O-K-A-Y?” But that’s our little guy and thank god we listen to the same type of music or did we just learn to love it because of him, who knows really, LOL. Also, our little guy does not let me cuddle him and love on him too momma so I know exactly how you feel with that one, it broke my heart for the longest time, it still does sometimes, but I had found he loves the burrito roll in the blankets so we wrap him up and we squeeze him so hard I swear we are going to break him, but he just laughs and laughs and I get my hugs in that way, Hey I’ll take what I can get, and then when WE have finally had enough of the burrito game because we are exhausted and we unwrap him and he is yelling more, more, I get one finally squeeze in without the blanket and he I finally get my hug that I long for, albeit one sided, LOL. When he was a newborn he fought me constantly when I tried to love and hug on him and wanted to do kangaroo care and skin to skin contact just upset him something fierce and trying to breast feed was a nightmare he would only do it with a nipple shield and I had to learn to hold him outward, somewhat under my arm and to my side instead of up against me, he just would not feed any other way, it got to be too overwhelming after about 6 months of that and I was struggling to produce as it was, when I wasn’t feeding him I had to pump, it was a nightmare, but I wanted him to at least have the most critical times feeding with breast milk since he was so little, 3 pounds at birth, and born with not one ounce of fat whatsoever. One of our bright spots though was when our little one finally came home from the NICU after 30 days of being there and he slept all night long and has never awoken in the middle of the night, NEVER, and what a blessing that was, no 3 a.m. freak outs to just play, it was a blessing because mom got overwhelmed during the day for quite a while. He is also an oral regulator so you can imagine everything is chewed to bits, including his little fingers, until we discovered things they make for the kiddos like Chewlry. We buy ours from a place called ArkTherapeutic,com because they have 3 levels of hardness in these chew jewelry and our kiddo has to use the hardest level to regulate himself while at school when he feels like he is “zoning out” or if he is super anxious, especially during test time. We lovingly call our little guy our little weirdo and it is never used as a derogatory term, he loves the name, we tell him we would rather the world be filled with a whole bunch of little weirdos just like him as they are the best little people you could ever meet. Our little guy makes us see the world through his eyes every single day and what a beautiful sight that little child of mine has. It has been a journey all its own and sometimes it does get quite overwhelming with having standing appointments with occupational therapy every week for years on end and our little guy is in middle school in a public school in the 5th grade and we have to get him out every week to go to therapy, but they have even managed to use his therapy as his PE and get school credit for going since it is a standing therapy prescription he goes to occupational therapy and they do physical activities with him at some point every week, so it worked out great for us, but this is the first time they have ever done anything like that before at school and this is the first school that ever even let that happen, but he manages really well using his chewlry and the older he gets he gets better at regulating it himself when he starts noticing the quirks, he has finally managed to quit tip-toe walking and his hand-flapping is very little now, only when super stressed or he has to repeat something he doesn’t really want to repeat. Oh, also our little guy is a Sensory Seeker so he seeks out hard pressure, loud music, everything must be done very hard for him to feel things, he doesn’t feel shots EVER, even laughs while they are being given, he has had so many blows to the head from his daredevil stunts it worries us so bad and most of the time we don’t even know it happened because his pain tolerance is ridiculous, its out and out scary. He fell off some gym equipment one time and busted his head wide open and needed 5 staples right in the back of his head that they put in with NO anesthesia at all and he laughed through the whole thing (mom almost passed out, they were more worried about me and he was just laughing away at mom looking so funny), and that is the one thing I worry about the most as having a kid with no pain tolerance and he also has no fight or flight instinct, it just scares the living daylights out of us, but again we wouldn’t trade our little guy in for nothing as he has the biggest heart, the most beautiful empath you would want to meet, and he has such an old soul its unreal, he just seems to get the world just not the sensory stuff around him, go figure. Good luck to you momma, I know the journey is long and tough, but it does have its benefits too. Our next step, PUBERTY, UGH!!! and oh boy I can only imagine, LOL.

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  48. I cannot image what you have been through. My niece’s son has Asperger but they have worked with it and if you left him alone to do what he is comfortable with… you would hardly notice it. God bless you and your family.

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  49. Reading how your son unlock the door is just like my son! My husband also had the stomach bug but I had to work. Well… my husband had the cops at his bedroom. Jeez what a nightmare for us SPD parents. We finally got a lock for the door that you had to put a key in it.

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