Ethan’s Sensory Processing Disorder Journey

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Next week I am taking part in the Schoolhouse Review Crew Blog Hop. There will be 90 bloggers that are participating, and each is choosing a topic to write about for the 5 days of the blog hop. I have chosen the topic Sensory Processing Disorder because it is a topic that I have learned so much about over the last 5 years, something we have come so far on, and something I have not shared much about on the blog.

I am hoping that this series will bless anyone who is embarking on a scary path of a new Sensory Processing Disorder diagnosis or someone who thinks their children might have it I pray it gives them guidance, and helps them figure out what they need to do to help their child.

I was originally going to share a post with all 3 of my boys with SPD and their symptoms on the first day of the blog hop, but after I realized how long the post ended up I decided to split it up into 3 separate posts 1 for each of the boys share them before the blog hop.

Each of the boys symptoms are different when you look at the big picture, Dustin and Ethan have very similar personalities in certain areas life like being on the go constantly, and having no fear of any situation… even when they should :0 but they look nothing like each other in other areas. Cody is very different from both Dustin and Ethan calm, relaxed, kept to himself, and very quiet.

Now before I go any further I have to say after raising 5 boys are just more active in general they love to climb, jump, and love taking things mom doesn’t want taken apart to try to fix them. After having a girl first I was blown away at how active my first son was compared to a girl and learned real quick to give him the physical activity he needed every day.

In todays society I feel parents rely to much on technology and instead of using them occasionally for entertainment they have turned into babysitters for parents children are spending way to much time inside sitting at a computer, I-Phone, or tablet. More parents need to let their children get their energy out (especially boys), explore the world around them and use their imaginations to play with toys, and even things they find around the yard.

 

Ethan ~ 5 ~

Ethan is my kiddo that keeps me on my toes regularly and always has. When he was an infant he did not nap and would nurse every 2 hours round the clock until he was 10 months old. Then we found out he had MAJOR speech problems, along with other issues we were very concerned about on top of Cleft Palate and Cleft Lip issues he has been to see lots of different doctors.

Here are a few posts that were previously written about Ethan and SPD.

Read more about his cleft lip/palate journey

Making the decision to send him to ECSE for the first year, despite having homeschooled all of our children for 5 years at that time.

Out thoughts at almost the end of the first year of ECSE.

Our If/Then board for learning to make good choices.

Our Visual schedule to prepare him for outings that were hard for him, and an answer to a prayer on getting him to bed at night.

Ethan has at this time been diagnosed with Emotional Regulation Disorder, Age Regression, SPD, Speech Apraxia, Extremely Gifted (IQ of 170) and has brain damage which causes him to not feel pain, not able to regulate temperature or emotions and other symptoms. His neurophycologist did inform us that if his neurological functioning did not improve in the next year he will be diagnosed with High Functioning Autism as well.

Ethan and Dustin are quite similar and both tend to be very big sensory seekers, on the go and busy all the time. Ethan is very advanced and has also been diagnosed as Highly Gifted which which is a wonderful thing, except for the fact that it means they can do things a lot earilier than they should be able to putting them in a whole new world they shouldn’t have acess to yet, for example at 13 months old he figured out how to unlock both the locks on the front door and walk out into the front yard, great but at 13 months old they don’t know that the road is dangerous, they don’t understand stranger dangers, and so many other things an older child would know by the time they learned to unlock the door.

Here is a picture of him at 14 months old climbing the rope wall in our backyard, which was great for him he absolutely loved it and continued to climb it regularly but it was enough to almost give me a heart attack! Just one of the examples of how he had no fear even at a young age.

What Sensory Processing Disorder looks like for Ethan

  • He cannot deal with loud noises well ex. toilets flushing, people singing (we couldn’t sing happy birthday in this house for almost 3 years), stores or crowded places can make for a huge meltdowns in public.
  • Eats non food items ex. sucker sticks, wrappers, rocks when littler, he licks lotion off while I’m putting it on, chews on toys and fingers despite the fact they have been ripped open from chewing on them so much I still haven’t found the perfect chewy for him… sigh..
  • He does not know how to regulate his emotions properly and will have a complete meltdown for no apparent reason.
  • Does not feel pain like normal people (gets blood draws with out flinching) and when he actually does feel pain, he gets very embarrassed and doesn’t like anyone to comfort him. (this is a hard one for me, no hugs to comfort your kiddo when they get hurt)
  • Very clumsy, the best analogy would be “like a bull in a china shop.”
  • Takes longer to process information and needs to be given repeated warnings of upcoming events.
  • Is very scared of unfamiliar people.
  • No sense of danger, until he was 4 1/2 he will run out in the road with no sense that it is dangerous even though he knows what a moving vehicle can do to him.
  • Used to be very hard to get to sleep at night, sometimes taking many hours of tossing and turning. To see how we overcame this check out my previous post on our Visual Schedule.
  • Flicks mom and dads fingernail as comfort.
  • Excessive risk taker, he jumps and crashes off of anything with no fear.
  • Baths were and sometimes still are a nightmare, especially when it comes to pouring water on his head you would have thought someone was killing the child.
  • Meals can be crazy sometimes he will play with his food because of the texture other times he cannot sit still, and will still to this day sometimes use his fingers to eat instead of silverware.
  • Has lots of food allergies (Peas, Soy, Wheat, Chicken, and many more)
  • Some days we are fine and have no problems, other days can be huge meltdowns and battles with everything we do.
  • Hates having his hair brushed or combed, he says “it hurts mommy.”
  • Resists having teeth brushed and finger/toe nails trimmed.
  • Distresses about clothes rubbing on his skin, he has to wear a tagless t-shirt under all of his shirts in order for them not to irritate him.
  • Not always aware of being touched/bumped unless it is done with extreme force or intensity.
  • Seeks out surfaces and textures that provide strong tactile feed back
  • Thoroughly enjoys and seeks out messy play.
  • He craves vibrating or strong sensory input.
  • Has a preference and craving for excessively spicy, sweet, sour, or salty foods
  • Has difficulty using scissors, crayons, and silverware ( all of these skill are improving through the repeated use of fine motor work)
  • When he was younger he was fearful of his feet leaving the ground, wouldn’t go on swings (here is my post about the first summer he started using the swings,) would get very upset when someone would push his chair in, did not like us carrying him down the stairs and would cling to us very scared like he had seen the most scary thing ever.
  • Clings to an adult he trusts, his first day in the parent/child Early Intervention class he held onto and hid behind my let the entire class.
  • Craves fast, spinning, and/or intense movement experiences.
  • Loves being tossed in the air (good thing daddy can still do that one 😉 )
  • Could spin for hours and never appear to be dizzy.
  • Loves the fast, intense, and/or scary rides at amusement parks.
  • Always jumping on furniture, trampolines, spinning in a swivel chair, or getting into upside down positions.
  • Now loves to swing as high as possible and for long periods of time (after being scared to death to try the swing)
  • He is a “thrill-seeker”; even dangerous at times.
  • He chooses to run, jump, hop etc. instead of walk.
  • He will seek out jumping, bumping, and crashing activities.
  • Loves pushing/pulling/dragging objects.
  • Loves jumping off furniture or from high places.
  • Often does not respond to verbal cues or to name being called
  • He had little or no vocalizing or babbling as an infant
  • Can never get enough condiments or seasonings on his/her food he will even mix many of them together and eat them.
  • Difficulty articulating and speaking clearly
  • Others have a hard time interpreting his cues, needs, or emotions (especially when it comes to dealing with a situation where he is upset)
  • He has a very difficult time accepting changes in routine (when he was younger it was to the point of tantrums for hours if our routine was different) last year when I would drop him off at school if I would even park in the wrong parking spot it would lead to meltdowns. Going out in public sometimes turns out to be a DISASTER!
  • Gets frustrated very easily, this is improving as we teach him how to calm down and deal with the situation in a more appropriate way but has taken many years of work.
  • Often very impulsive and does thing without thinking of the consequences until after.
  • Functions best in a smaller group setting or when given individual attention.
  • One minute he will be playing and the next minute we will be dealing with a full fledged tantrum or outburst.
  • He always prefers to play on the outside, away from groups
  • Difficulty appropriately making needs known as he is getting older this is getting better but would just assume others would know what he wants.
  • Severe mood swings throughout the day (angry to happy in short periods of time, and usually without any visible cause)
  • Frequent constipation (I have to closely monitor his stools and adjust his diet accordingly)

Next week I will be sharing for 5 days as part of the Schoolhouse Review Crew Blog Hop about different topics on SPD be sure to follow along so you won’t miss any of those posts. The first post will be on August 5th, and the crew will have 90 bloggers sharing about different topics you won’t want to miss it.

nicolewalter

On Monday I shared Dustin’s journey with sensory processing disorder, where I shared about our journey with ADHD meds and reasons for not taking them anymore.

Yesterday I shared Cody’s journey with Sensory Processing Disorder is a very different set of symptoms then Ethan and Dustin’s he is very quiet and kept to himself.

My Kids Sensory Ideas board has lots of great ideas for keeping your SPD kiddos busy and give them their daily “sensory diet.”

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I am linking up with these great linky parties!

Trackbacks

  1. […] done whenever it was done for the day. Well that was before Ethan came along, due to the fact that he has severe sensory issues having a strict schedule is the only way we can function not only as a school but also as a […]

  2. […] and problems then we have had in a very long time. I have to admit it reminded me that even though we have come so far with him we still has some really big problems that will probably never get better Now I have to figure out […]

  3. […] Ethan’s Sensory Processing Disorder Symptoms […]

  4. […] speech problems were something that were related to the cleft palate or not. During this evaluation we found out Ethan was struggling with other issues as well  as the speech issues, since Early On tests for everything at the evaluation and not only their […]

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