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Seen the light
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radamis Offline
Newbie

Posts: 4
Joined: Apr 2012
#1
Seen the light

Hi everyone,

I am from B.C., Canada and I have known for a long time that there was something different about my almost 4 y.o. son. I'm on maternity leave with my now 4 month old and during this last four months have had more opportunity to focus on the issues that I have sensed for a long time with my first born. He was born at 37 weeks, due to complications I was having with the pregnancy, but the maternity nurses were convinced that he behaved more like a 35-36 weeker. He was born with a very deep palate which my sister recognized right away (she was a dental assistant) and could not latch on the breat. Forceful teachings by Public Health nursing consultants only made me more upset and frustrated and my abandoning trying to get him to latch on the breast made me feel like a failure. He was generally an easy baby all in all, slept through the night at 3 months, but wouldn't take a soother or latch on to a blanket and only wanted his thumb. He was a frequent spitter despite trying every type of formula and when it was time to switch to solids, we were introduced to his very violent gag reflex and aversion to different textures. He still tries to stuff his face and gags uncontrollably to the point that everyone thinks he is choking. This is an almost daily occurance for him. He had frequent ear infections and was on antibiotics more often then not. He finally had tubes put in Dec 2011. This is when I really started to notice his hypersensitivity to sounds. He frequently says that "you're too noisy", the baby cries and he covers his ears and cries as well. He can't go into the daycare coat room when everyone else is getting changed because it is too upsetting for him. He was diagnosed with poor vision in December 2011 as well for which he now has glasses and his having them increased again to a very high (+5 in both eyes) setting. He hates any change in routine and is known to have an absolute meltdown when he is seemingly forced into an activity. My husband and I are very active and wanting our son to also be active, we enrolled him in very basic skating lessons. It took eight 30 minute sessions before he could coordinate "marching his feet" and pushing a small plastic chair around the ice at the same time. The two year olds in his class could do it by the end of the first session. He cried unbelievably during these times with snot and tears all over his face and jacket. I was so embarrased, I could see the other parents/grandparents staring at him. I'm ashamed to say I lost my cool more then once when we got back in the car and said some things to him that I regret. "why can't you get it?" "You're smarter then that" "stop being a baby and be a big boy". I still get upset as I know he can remember things like this and I can't take it back. On the plus side, he mastered a balance bike in no time flat, on the down side, he has really outgrown it and in the last few days we got him a bigger bike with pedals and training wheels. Today I had the "a-ha" moment", he cannot cooridnate steering and using the pedals, it is like there is a brain body disconnect. He became unconsolable within minutes and did the same crying, snot out of his nose the whole time we tried. My answer to the problem was "try harder, everyone else can do it your age". Then it was time for skating ( I take him to a public skate). He can hold his balance but cannot lift his feet up and down, only shuffle. He is very distracted by sounds, the clock in the rink. He cannot stand up without help. I came home and again was frustrated. I finally looked over some books that I got 1 week ago from the library about "difficult behaviours" and started reading about SPD. It fits him to a "T". It is like the lights went off. He HATES public bathrooms, toilets are scary, hand dryers will send him into a fit. He will only eat four things, his coordination is quite poor, he frequently trips, has trouble jumping, will not entertain many playgrounds "too scary, too big". He does not like to be tickled or touched. Kisses for the most part have always been out of the question. At any rate, I think today, through this site and another SPD global site, I understand what he may have. I will now need to investigate getting him fully assessed by an OT who specializes in diagnosing. I wish I would have followed by gut a long time ago that "something wasn't right" but maybe now, I can move on and try to be a more understanding parent and help to facilitate the best possible nurturing environment for my son. Thank you,

Donna
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Heather Offline
Site Moderator
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Posts: 117
Joined: Apr 2012
#2
RE: Seen the light

Donna,

Sounds most definitely like you son has SPD, no doubt in my mind. He has a very large similarity with my 4 year old who has it. OT is a must when it comes down to SPD as I'm sure you have already gathered. Most pediatricians seem to push sensory issues to the back burner. OT's are your child's best advocate besides yourself. When you take him to the doctor, you actually can request for him to be evaluated by a OT. Thats what I had done with both of my girls that have it. Just like you had stated, find a OT who specializes in SPD, beings not all do.

Your moving in the right directions Smile Its a tough road, but there is light at the end of the tunnel. Hang in there and just read up on SPD is the best I can tell you. The more knowledge you gain the better. Also, support sites like this one are great on getting advice when you just don't know what to do anymore. There was a book I ordered off of Amazon.com called "Parenting A Child With Sensory Processing Disorder:A Family Guide to Understanding and Supporting Your Sensory-Sensitive Child" by Christopher Auer.
http://www.amazon.com/Parenting-Child-Se...061&sr=8-1

That book helped my family a great deal.
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radamis Offline
Newbie

Posts: 4
Joined: Apr 2012
#3
RE: Seen the light

Thank you Heather for your reply! I have made an appt. with a private OT specializing in SPD and other developmental delays for the end of the month. I am looking forward to learning stategies to make his world a little easier for him to navigate in. I will look into the book you have suggested!
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Heather Offline
Site Moderator
**

Posts: 117
Joined: Apr 2012
#4
RE: Seen the light

Your welcome! Hope everything goes well with the OT. You'll see changes slowly, but, it will help him so much as you already know Smile
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beck7422 Offline
Regular

Posts: 342
Joined: Jun 2010
#5
RE: Seen the light

I would second that his challenges are most likely SPD. There is also a chance he may have food allergies with his problems with foods. I recommend also you both suffering through a skin prick test (especially not pleasant for an SPD individual) checking for food allergies.

I know food allergies seem like they would limit a diet, but if you know what and why foods are bugging him, you can work out techniques and ingredients to diversify his diet better. I have a long list of food allergies, but due to the help of friends and my husband my diet has never been so diverse. As a child, my diet was very limited and my parents had a rough time getting me to try new things. A lot of new things made me sick, so I didn't bother with them again. I stopped telling my family that food didn't make me feel good, since the doctors just claimed I was trying to get attention.

On coordination issues, your son will take longer than the other kids to learn how to do physical things. However, once he figures them out, he could probably teach classes on all the things not to do (since he will have literally tried every possible and impossible option). I know it seems weird to someone who is naturally athletic, but some people just need extra time to figure out thier muscles, balance, and strength. It is especially difficult for someone with SPD whose body seems to be lying to them all the time about their physical reality.
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radamis Offline
Newbie

Posts: 4
Joined: Apr 2012
#6
RE: Seen the light

(04-16-2012, 08:53 PM)beck7422 Wrote: I would second that his challenges are most likely SPD. There is also a chance he may have food allergies with his problems with foods. I recommend also you both suffering through a skin prick test (especially not pleasant for an SPD individual) checking for food allergies.

I know food allergies seem like they would limit a diet, but if you know what and why foods are bugging him, you can work out techniques and ingredients to diversify his diet better. I have a long list of food allergies, but due to the help of friends and my husband my diet has never been so diverse. As a child, my diet was very limited and my parents had a rough time getting me to try new things. A lot of new things made me sick, so I didn't bother with them again. I stopped telling my family that food didn't make me feel good, since the doctors just claimed I was trying to get attention.

On coordination issues, your son will take longer than the other kids to learn how to do physical things. However, once he figures them out, he could probably teach classes on all the things not to do (since he will have literally tried every possible and impossible option). I know it seems weird to someone who is naturally athletic, but some people just need extra time to figure out thier muscles, balance, and strength. It is especially difficult for someone with SPD whose body seems to be lying to them all the time about their physical reality.

Thanks Beck, your discussion on the physical issues really makes sense. I've always said to people, it will take him longer to be able to do the activity, but once he has learned it, he does it quite well. But now that I know that there is actually a real reason that his body is limiting him at this moment, hopefully people will understand. It has been difficult for people to fathom why he is not "athletic" as his little physique gives the impression that he should already be playing soccer, baseball etc...but with help, we'll get there!
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