Max has a terrible sensory processing disorder, its annoying, frustrating, scary, and that is just one my side, so I can't even imagine what he has to deal with. It has taken us a while to come to this sensory disorder diagnosis, but we have finally figured it out (about a year ago).
When Max was younger we were convinced that he was autistic, whether it be aspgergers of more serious, we just knew. He never ever spoke and was always terrible about not wanting to look anyone in the eye (which we later discover was due to ADHD, but I'm not completely convinced he has ADHD...different post), which went on long past the age of 2. We took him to several specialist, speech therapy, different pediatricians, sleep disorder clinics, chiropractors, acupuncture, changed his diet, even genetic testing... yeah we pretty much did everything, but the thing was he didn't fit the characteristics of a child with autism. Praise God! He was born 6 weeks premature, so I thought he was just delayed and I should give him a bit to catch up. One day he woke up and started talking, like talking A LOT. I guess he just didn't have anything to say until then. So thanks a lot Max for all the extra worries. Something still didn't seem right, but I was new to this whole parenting thing and very prone to over worry about every single tiny little thing. We brushed off his weird tendencies as quirky and went on with life.
Doctors debate the condition about whether sensory processing disorder (SPD) is real or if you just have a quirky kid, so I will let you in on exactly what sensory processing disorder is:
While sensory processing disorder is very common in kids who have autism, it is not commonly recognized in children who do not have autism. Max is no where near the autism spectrum, so lack of information on sensory processing disorder left us looking for answers for a long time.
SPD affects the way a child processes messages sent to the brain from any of the 5 main senses. It can range anywhere from mild sensory intolerance to full blown melt down. SPD can affects a child and make them over sensitive, under sensitive, or both, which is particularly confusing. The reasons doctors have a hard time agreeing if it is a diagnosable disorder is because they are finding it hard to separate from autism or ADHD...in other words they see the problems the kids are having with sensory issues, but they them as being related to autism or ADHD.
Yes, Max was diagnosed with ADHD and SPD is a part of ADHD, but he doesn't fit all the characteristics of ADHD. Ugh...confusing right?!
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| We felt the same way! |
*Children with SPD find things such as dirt, hair, toenails, fingernails, being barefoot on sand/grass/dirt, completely intolerable.
Max can't stand his fingernails or toenails to be long at all. He seriously will sit in a chair and pull his nails off so short that they are bleeding. I will tell him repeatedly to tell me and I will get the clippers. Hoping to help him out I will cut them as short as possible without getting to the bleeding point of short, but as soon as I leave he bites them even shorter. Its heartbreaking to watch! He will never, ever walk in the grass without shoes stating that the grass is "too pokey." On rainy days we can't leave the house, he absolutely cannot stand water to touch his shoes, shirt, or skin...unless it is designated swimming time and he is wearing appropriate swimming attire.
Absolutely can't stand to have his hair cut...so we are growing it out :) He tells me the feel of the scissors on his hair is so "scratchy" and the clippers are "so loud his ears will fall off." (dramatic I know).
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| First haircut |
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| Yep...he still acts like this at hair cuts. |
There are a lot of kid friendly foods he won't eat because he can't stand the way they make his hands feel while he is eating them. Syrup on his pancakes? No way! He may eat one bite, but the minute the dreaded syrup may touch any part of his body he will have to literally take a shower. No ketchup, mustard, honey, rarely ice cream, never Popsicles, and he can't drink a drink that is "too cold."
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| how we discovered syrup is bad new for Max |
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| Frustrated because he is messy and needs a shower NOW! |
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| eating cookies with a fork because the sprinkles "stick to my fingers and make me so sad." |
*Children with SPD are excessively cautious and afraid to try new things, upset by transitions or unexpected changes.
Max has about 5 main foods that he eats and getting him to try another one is agonizing. Its hard to be upset with him because he is so unsure about the texture and what it might do that it completely freaks him out. Typically we have to stay away from jello, anything gummy, slimy, pokey, or "too crunchy." Transitioning him to a new activity is a special kind of hell. We have finally realized that he needs at least a 2 minute warning that we are fixing to move on if he is doing something in a regular setting and a minimum of 5 minute warning if we are in a social setting. Our days are also so scheduled that it would make the movie Groundhog Day look like something unexpected is going to happen. Spontaneity freaks him out and he makes it very clear what we are supposed to be doing if we vary from the schedule. People are always confused why I am regimented about a morning breakfast routine and it is because I don't want my day to suck. A bad start for Max = a bad day for everyone ( he has gotten better this year about "vacation time" and that it is "allowed to be different then" but it is still a challenge).
*Children with SPD use either too little or too much force when completing tasks such as drawing, hugging, jumping, etc...
We have to constantly tell Max to "be easy" "use gentle hands" or flat out "Just quit holding so tight!!!" Everything he does is with hulk strength. It can even come off as aggressive, but he honestly has no idea he is doing it until you point it out. He has broken so many crayons that I could probably stack them up and it would be as tall as he is. When we are crossing the parking lot he holds hands so tightly that I am afraid he is going to crush tiny Jerry's bones, but he honestly never means to do it. When he jumps or run it is with so much force that he might just run right into the wall because there is no way he will be able to stop himself.
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| practicing "open hands" on an unsuspecting sleeping victim |
I am so grateful he is now old enough to communicate with me exactly what is bothering him. When he was younger and had a hard time communicating he would just completely loose his shit all the time. I thought I was just raising a terrible kid! Worst parent of the year award for me every single day because he constantly threw epic fits that we so inconsolable we rarely left the house.
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| A most recent melt down over swimming attire at Tiffany's house |
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| Communication problems at work |
Now when he is "having a moment" (as Reed and I like to call it) we can hopefully reach him in time before he enters freak out mode. If we get there just as the moment is starting then we can stop it before it becomes an ordeal. Luckily, we have been his parent for over 4 years now so we can usually see "the moment" coming. However, we have times that something new will occur and it surprises even me. This is when the difficult parenting happens. It is so hard to distinguish terrible preschool behavior from behavior related to sensory issues. For example,
We went to the store yesterday (sensory overload on the best days) and it was all going smoothly. We avoided the entertainment section because it bothers him that there is "too many tvs" and didn't get anywhere near the aisle with the hangers because "clothes go on those!!!" Suddenly he starts saying "its time to go! time to go! got to go now!" I thought he was just being a usual impatient kid and told him we have to wait that the shopping is not done and he better be good or there will be no treat at the checkout line. He continues to be bad and starts saying " I can't take it!" and crying!! WTH?! I thought we were through with the crying spells! I told him to act like a big boy and quit throwing a fit. He of course didn't. Result= no candy for Max at the checkout line. As soon as we get outside and I put him in the car he completely calms down. Then he says "Thanks mom, that squeaky wheel makes my teeth hurt."
Ok that's a new one!! Was it really because of the wheel hurting his teeth or was he just acting like a typical preschool jerk? No idea, but it is situations like these that get confusing.
His little "quirks" are what terrifies me when he enters social setting and one of the big reasons we have been putting off preschool. How in the world is his teacher possibly learn all the quirks it has taken us 4 years to master? Is he going to have to stay home when it rains?! The teacher has so many other children to deal with, she can't completely focus on him. So what is the solution? Tell him to toughen up and get through it....yes, we do that a lot and we force him to do things he doesn't feel comfortable doing because we want him to function in the world with sensory overload. However, when we do this too often we tend to see a new little quirk emerge.
But now something amazing has happened! It has completely made me a 100% believer that children are adaptable and pretty resilient. Max developed his own coping strategy in a form of a friend he calls "Rowdney." Yep, an imaginary blue, purple, and green dinosaur that seems to pop up when we are having "a moment" Rowdney first appeared in our life about a month ago while we were at the lake (for the record, I always thought imaginary friends were very creepy, my sister on the other hand LOVES when kids have them, so this was a dream come true to her). I thought this dinosaur would be into our life and then gone again within a matter of days, but he has stuck around and proven to be very valuable. Whenever Max is in an uncertain situation Rowdney does it first. If it is raining outside Rowdney runs to the car first, if he is ok with it then we can go as well...completely without a freak out! Rowdney tries the bite of new food first (yes he has a small plate a supper sometimes) and if he likes it Max will give it a try. I'm not sure how long Rowdney will stick around and how helpful he will be as he gets older, but with the development of Rowdney I am pretty confident that Max will come up with his own coping strategies when the time is right :)
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