Let's help each other learn about disabilities

[Michigan]

I think that some of the past post have made it evident that people need to have a better understanding of all the disabilities out there. It’s easy for people to lump themselves all in the same group but just because I wear glasses doesn’t mean I know what it’s like to be blind and just because someone uses a walker or cane doesn’t mean they know what is involved when you are paralyzed. So lets take this opportunity to explain your or your family members disability so that we as a disability community will have a better understanding of each other.

I have 2 daughters with Spina Bifida and Hydrocephalus. Spina Bifida is a birth defect where the spine doesn’t close during the first 21 days of conception and the spine and nerves are exposed at birth requiring immediate surgery to close the back. Depending on where the spine is exposed will determine the level of paralysis although since the last nerves in the spinal column are those that control bowels and bladder even those that are able to walk will be incontinent. Today, incontinent people are able to self catheterize which helps prevent accidents but they will happen. However, Goodnites, Attends, or diapers don’t have the capacity to hold a full bladder and just like a person without a disability that went to the bathroom and then has to go again in 20 minutes this too can happen to an incontinent person with no notice. Hydrocephalus is water on the brain and caused by the break in the spinal column in people with Spina Bifida. Fortunately, today VP shunts are placed in the third ventricle of the brain with a tube that runs down the inside right side of the body and empties the excess spinal fluid in the stomach to be absorbed.

Neither of my daughters are not able to bare weight so standing and walking is out. They are fulltime wheelchair users and compete in various wheelchair sports activities (swimming, hand cycling, track and field). If my kids friends have any kind of a porch they can’t get in their houses. When I was looking for a new house I couldn’t take my kids with me because they wouldn’t be able to get in the house. When I found the one we have now, I did bring them to crawl in the back door and all through the house. Before we had our rear lift van there were many times we would go to the store and just end up going home because I couldn’t find a place to park with a side lift either all the handicap spaces were full or someone parked on the access lines and I couldn’t get the lift down.

It’s been my observation that kids are really great when they see someone with a disability and ask questions that are not offensive like what do I have to do to get one of those pointing to the wheelchair. However, I have heard adults make comments to my kids that have made the oldest one sit in the bathroom at WDW and beat her legs until she had no more strength to continue beating. Although we did watch a family wrap themselves around a poll while turning around staring at my kids. That was pretty funny.

This post is not meant to cause a debate over who is more disabled it is merely to allow each of use to understand the different disabilities and not judge all disabilities the same.


Cindy

 

[Selket]

I really enjoyed the post about your children Cindy. I'm not so sure I belong here at the disAbilities board but I do read the posts and sometimes post myself and no one kicks me out

My younger son is now 27 months old and, to begin with, he was slow to walk. When we went to WDW last August when he was 20 months old he couldn't yet stand or walk so we got a GAC in case we found ourselves with a long wait - to allow us to take the stroller in line. Fortunately we didn't need to use it much! (He also weighed about 32 lbs at the time and I just couldn't hold him that long - sitting him down on the hot pavement was not an option!) We had a great trip though and the GAC was quite helpful with a few things. Fortunately now he can stand and walk pretty well - and should be out of physical therapy by the time he turns 3.

The bad news is that in March he was diagnosed with juvenile diabetes. Fortunately he didn't get sick as we caught it so early - but it has been a rough past 6 weeks dealing with the highs and lows and all the shots and finger pokes. And....to make matters worse....about 3 weeks ago I gave him a little bit of peanut butter on a cracker after lunchtime and, long story short, he had a nasty reaction - his face started swelling, hives all over, his eyes were swelling shut and hives spread down his arms and over his stomach. Fortunately we had benadryl and his airway stayed open. We were told he probably has a life threatening allergy to peanuts. I had to wait until early May to do the allergy testing so the reaction would have left his body - so when all that comes back we'll know for certain. I never realized how life-altering a peanut allergy can be - it really does limit what you feel comfortable doing (like flying on an airplane or eating at a restaurant). I look at peanuts like they are handguns! LOL! It seems crazy. Well....I'm still in shock from the diabetes diagnosis so throwing the peanut thing on top of it was a bit too much. I'm afraid the next time he touches peanut butter it will be a life-threatening reaction. Something so common that kids eat all the time, is served at my other son's school for lunch and that kids bring in for snacks at school.

Anyway - don't know if I belong here but I enjoy learning from everyone. I'm thankful that William is happy and generally healthy but I hate that feeling of, at a moment's notice, he could have a peanut reaction or a diabetic low, etc. I just hope I don't give him the epi-pen instead of the glucagon or vice versa and treat the wrong thing!

I've read that WDW is a great place to vacation for both problems so I look forward to testing that out

 

[SueM in MN]

I don't have time to post much just now (I've already gone to sleep once and found DD was trying to make popcorn for herself because she's not ready to sleep).
Anyway, I just wanted to say that I think this is a great subject and I look forward to learning more.
And, anyone who thinks they might not belong here - all are welcome, whether you or a family member have a disability (temporary or permanent) or not. Anyone who is willing to help others with information (or just listening and offering support) should feel free to visit any time.

 

[dclfun]

I agree this is a great way for us all to understand more about each other and the joys and challenges we face in life, as does everyone. I intend to share also when I have more time to do so. This is too important to rush through and unfortunately that's all I'd have the time for right now. Sue....I am laughing thinking about your DD and the popcorn. Thanks to those who have posted. ---Kathy

 

[Michigan]

Hi Carol G.

Look into getting your son a medic alert bracelet. As he gets older you won't always be there with him and in the event he needs medical treatment you want to me sure those giving the treatment know that he is both a diabetic and allergic to peanuts. My Mom is a diabetic so I know that peanut butter is often given. The good thing is that schools take peanut allergies very serious and when you son starts school they will do a no peanut policy.

I am allergic to fish so much that if someone else at the table has fish I will have a reaction. Remember you don't want to use the epi-pen unless his airway is blocked. I got a breakfast sandwich at McDonald's once that a fish sandwich must have been next to and my tongue became swollen, bp dropped and I lost my total vision. They gave me Epinephrine in the ER it makes your heart beat really fast and shake uncontrollabaly.

 

[Selket]

Thanks Michigan - I do plan to get him the medic alert bracelet (that brand) once his allergies are confirmed (and to see if it is just peanuts or all nuts and so forth) so I can have his bracelet inscribed with both diabetes and peanuts. I have a non-medic alert sports type one now for his diabetes.

Thanks for welcoming Sue - which I got last summer here too when asking about the GAC. I always like the helpfulness of this board.

 

[faeflora]

This is a wonderful way to learn about disabilities.
So in the spirit of sharing.

I am the disabled person in my household. I was born with Ehlers-Danlos Syndrome Type 3 Hypermobility. My mother shares the same diagnosis and my father has Marfans Syndrome which is the sister disease to Ehlers-Danlos.

I was diagnosed at age 30 by a wonderful family doctor who saw the disease while doing his residency at Johns Hopkins.

EDS is a genetic disability that is caused by missing co enzymes that are connected with the healthy reproduction of collagen. Collagen is the "glue" of the human body. EDS/Hypermobility is one form of EDS.
Hypemobility basically means that all of my ligaments and tendons are hyperflexible causing great pain in all of the muscles, exhaustion, and various forms of subluxation and dislocation in all of the joints of the skeletal system. Sprains do not heal completely leaving a more fragile joint system which is then more prone to subluxation and dislocations. I also have difficulty healing from cuts, my skin is hyper sensitive to sun and to chemicals and is easily cut. I also bruise easily. This disease use to be refered to as the "Rubberband Man Disease". I use crutches at home, and a wheelchair once I leave my home. EDS has also caused me to have Mitral Valve Prolapse and TMJ. Most recently is has caused hearing loss and I am now hard of hearing. There is a chance that in the furture I will be deaf. So I am currently learning sign language in an Interpreter Training Program.

I am totally into answering questions about this rare syndrome so ask away .

faeflora

 

[Earstou]

I'm always happy to do a Chiari Malformation 101, especially since most people have never heard of it before.
Chiari is a rare condition where the lower portion of the brain penetrates out of the skull, into the spinal canal. This "pinches" the brain and impedes the normal flow of cerebral spinal fluid.

The affected regions of the brain are the lower brainstem and cerebellum. The lower brainstem controls breathing, swallowing, balance, the vocal cords, eye movements, and sensation and movement of the arms and legs. The cerebellum's most important function is to coordinate body movements.

Headache and neck pain are the most commonly reported symptoms. Some individuals with Chiari malformations report vertigo or dizziness, weakness in their arms and/or legs, a tingling or burning-like pain in the arms and/or legs, fast or slow heart beat, high or low blood pressure, ringing in the ears, shortness of breath, disequilibrium, and fatigue.

Chiari malformations can occur with several other conditions, such as hydrocephalus, spina bifida, scoliosis and syringomyelia ( excessive fluid in the spinal cord, leading to a cavity detectable by MRI).
Some of this info came from Duke at http://www.chg.duke.edu/patients/facts.html

Chiari can be hard to have diagonosed, I started searching for help for dizziness in 1987 and was finally diagnosed in 2001, after acquiring most of the above symptoms. I also have fibromyalgia pain, which may be from chiari, (this link is still being studied).
There is no cure for Chiari, but there is surgery to decompress the brain, which helps some people. I had some skull removed, the back of my first vertebrae shaved and a patch put on my dura to take some pressure off the brain (waah, now I can't ride rollercoasters!). Since my surgery, I have less pain, and my symptoms bother me less frequently, and the progression has stopped. If I had been diagnosed and had surgery sooner, it's possible I would have gotten more relief from the surgery (ie:my brain was "pinched" for so long it can't recover). So I always try to inform people about chiari in case someone they know can be diagnosed with it quickly!

 

[Andrew Bichard]

I have either muscular dystraphy (small m, small d, not Duchennes) or Spinal Muscular Atrophy. According to my doctors it doesn't matter which, as the symptoms are the same and neither is treatable. My neurosurgeon tells me there is no point in the surgery necessary to tell which I have. It is a very slowly progressive condition I have had from birth.

I was a late walker, then the kid who couldn't keep up with the ball. As a teenager I had a slight limp. By my late 20's I was wearing built up shoes, then braces & a cane. By my forties, I was making excuses not to go out except in the car. I would drive, & my wife would go into shops for me. Then one year on vacation (in Florida!) I borrowed a wheelchair. I bought my own when I came home & it was a great liberation as I could start going places again. Four years back I graduated to a power wheelchair which I use at home to ride between my home and the local shopping area. (I have about a 15 mile range). 18 months back I bought a 'drive from wheelchair' adapted Grand Voyager for going further afield. I have already taken it to Guernsey, the Channel Island where I was born (see flag left) and which gave me my french name. I will probably take it to France this summer through the Chunnel.

I now take my vacations mostly at WDW, because of accessibility. I can get around on my own all day, and within the 47 square miles of WDW can go most anywhere I please.

Apart from my inability to walk (I can stand up to transfer with something to hang on to), I don't consider myself as 'disabled'. I am fully mobile with my wheels and can get around most anywhere without steps. The UK is gradually catching up with the US in terms of accessibility.

Andrew

 

[Figaro]

I have congenital knee problems (both knees) and 40 plus surgeries later, have no cartilage in either knee, no knee-cap in one and no anterior cruciate ligament in the other. Which means that I fall a LOT. And dislocate the knee without the cruciate ligament frequently. Well, frequently enough that I can put it back in myself now (smile).

I am fortunate because I can walk, but because my knees are so unsteady, I do fall quite a bit. Right before our last trip to WDW I managed to take a tumble and crack my tailbone, which is my only major broken bone so far (I don't count toes, as I've broken most of them at one time or the other during falls)(smile).

I have my family physicians home phone number in the cell phone, as well as the direct number to our local emergency room (the information is in their computer), because the bruises I have at any given time are pretty significant. Which means I have never one single time had an emergency room visit where they didn't ask my spouse to leave(sigh), as the bruises usually make it look like I've been beaten. I now know that whacking any part of my body on a door knob leaves a bruise that is almost identical the bruise that a fist makes(smile), and I do it all to myself.

Mostly I can lurch along in my day to day life without having to use a wheelchair every single day, but I can't go out without having someone with me because of the falls. My spouse repeatedly tells me that he wishes I was the kind of person who would sit at home and just eat bon bons (smile), as he worries about coming home and finding me with a broken neck. But I try not to let that slow me down.

The other day I took a walloping fall on the dining room floor and managed to knock the wind out of me. Our big old orange tomcat had been walking through the dining room when I fell and paused when I went down on my back right in front of him. Then as I laid there trying to get my breath back, he proceeded to continue on his way through the dining room by walking right up and over me(smile).

WDW is wonderful because of its accessibility and because there are so many different things to do there. This board is a wonderful place to ask and receive all kinds of indormation and is truly one of the more special online places I've participated in and I'm looking forward to getting to know everyone a little bit better.

 

[candykisses]

My husband is a paraplegic T6-T7 complete. That means his spinal cord is severed at the 6th Thoracic vertebre. No feeling below his break which is just below the armpits.

We were married 2 years when the accident happened. It will be 22 years in October.

Most people, even close friends thinks paralysis only means not being able to walk, but it's much more than that and of course every case is different.

He doesn't have any bowel or bladder control without meds. His skin is very fragile and can burn, blister and break down easily. The skin takes a long time to heal. It once took 4 years to heal a blister on his foot because an aide in the hospital tied his shoe too tight.

He can not control body temperature, so we need to be careful he doesn't get too hot or cold. His muscle spasms are strong enough that once while I was kneeling down to tie his shoe , he kicked me so hard I thought my jaw was broke.

As an aging para he has developed Type II Diabetes, MRSA which is resistant staph infection, worn rotator cuffs and his hands are always cracking open.

We are ever vigilant for infection because he had abdominal gangrene and didn't know it. Landing him in the hospital for 5 months.

The bright side is he is very active in the community and with our boys. If he not volunterring for something then the boys volunteer for him.

 

[cupcake]

But it is nice to hear more about friends who post here! I have two extra bones in each foot (supernumerary bones). The visible ones are next to my arch and stick out quite a bit. The others are in the heels and you can't see them (and they don't hit against shoes). The arch bones are an issue with shoes and are fully floating, which means they are only held in place by tendons. Depending on where they are at any given time, they cause tendonitis in the foot and lower leg and/or nerve issues if they hit nerves. They also cause blood flow problems. The tendons that hold your foot together go down the back of the leg and then wrap around the foot going around the heel and arch side of the foot. My tendons are misrouted due to the extra bones so my feet don't hold together well (you can twist them if you hold the toes and heel). The extra heel bones hit tendons if they are in a bad place but they are not a major issue as they are not floating (ie they are cupped next to bones and stay in place pretty well although they take up space they shouldn't). The long and short of it is that I am the classic invisible issue person who hops out of the wc and looks fine but can't walk or stand a lot. Surgery is not an option due to potential scarring. My dh says I would not be me without my special feet. I don't know about that! But they are me, and I manage well with them, although I do favor dorky orthopedic shoes.

Cupcake

 

[dclfun]

I am also the disabled family member in our household although my husband also had diabetes and was an amputee before he passed away nearly three years ago. I have A.L.S. which is amyotophic lateral sclerosis, also more commonly known as "Lou Gehrig's disease". It's a rapidly progressive fatal neurological disease that basically destroys all voluntary motor function while leaving mental capacity intact. Usually you are left with the ability to blink your eyes but not to breathe, swallow, or move any body part on your own. I live on a ventilator 24/7 and on a feeding pump 24/7 but still have some hand usage with which I drive my wheelchair and an adapted van ( I drive with a joystick only and a touchpad- the van runs by computer). I still work although I need others to get me up and ready for work and back into bed at night. Most people die from inability to breathe so since I'm on a ventilator, I expect to continue living until my quality of life is too compromised. At that point, my Dr. will have me removed from the vent as he already knows my wishes. I am learning to speak with a computer which is mounted on my chair and a special communication program called "Words Plus". It's very slow and I sound like a robot, which I don't like! It also allows me to type with a switch so I don't expect to ever lose the ability to communicate. I have lost alot of head, neck and back musculature these past few months so I'm becoming very uncomfortable even in a wonderful power chair. ( it doesn't stop me).
I can relate to others who've not been able to shop or go places because all the parking lift spaces are taken. I am often stared at which bothers my children more than me, but sometimes can get really "old", esp. when people also ask their friends, "what is that", vs "who is that", what disability does she have", etc...something with a bit more compassion. Mostly I enjoy life, and like Andrew, do not consider myself disabled, just needing to do things a bit differently. I wish I could spend more time relaxing and enjoying family but there is no assistance for adults in the state of Florida and so I *have* to work if I want to have our bills paid. Thank goodness I love my job and co-workers and have a great emotional support system, so in many ways I am more fortunate than many. ---Kathy

 

[Talking Hands]

I have several chronic illnesses that affect my mobility and quality of life. First is diabetes which has given me neuropathy. Unfortunately that has affected both my mobility and hearing.
I also have fibromyalgia which affects my pain and energy levels. I may look like I am going strong when I work but as soon as I get home I am in bed. The pain causes sleep disturbances and I frequently only get an hour or two at night.
3rd I have neurofibromatosis which causes tumours on and in my body. Fortunate so far none are visible. Yes I am vain The internal tumours also cause pain depending on their location.
I also have osteoarthritis in my hips, back, neck, knees and feet.
Finally I have sciatica that causes my legs to go dead. Frequently I will fall because of this. Bruises are a regular occurance. Also one fall caused me to shatter my ankle and leg almost 2 years ago and I still have pain from that and cannot flatten the left foot so if I am not wearing stout heals I limp. I do great when I can sit frequently but if I am out all day I still need to use a wheelchair.
Fortunately I am doing reasonably well at present and can substitute teach and interpret but I do have to pace myself and not get overtired. Also firtunately the schools I work in don't look at my handicaps but at my abilities to work with special needs children and to teach them.
I'm not complaining though because I have a great family and a rewarding life. And I am accepted in both my worlds both hearing and Deaf.
I have on daughter who is also handicapped. She has ADHD, LD, and a physical handicap but still excels as a musician and I am really proud of both her and her little sister (also a musician)

 

[luvmarypoppins]

Originally posted by faeflora
This is a wonderful way to learn about disabilities.
So in the spirit of sharing.

I am the disabled person in my household. I was born with Ehlers-Danlos Syndrome Type 3 Hypermobility. My mother shares the same diagnosis and my father has Marfans Syndrome which is the sister disease to Ehlers-Danlos.

I was diagnosed at age 30 by a wonderful family doctor who saw the disease while doing his residency at Johns Hopkins.

EDS is a genetic disability that is caused by missing co enzymes that are connected with the healthy reproduction of collagen. Collagen is the "glue" of the human body. EDS/Hypermobility is one form of EDS.
Hypemobility basically means that all of my ligaments and tendons are hyperflexible causing great pain in all of the muscles, exhaustion, and various forms of subluxation and dislocation in all of the joints of the skeletal system. Sprains do not heal completely leaving a more fragile joint system which is then more prone to subluxation and dislocations. I also have difficulty healing from cuts, my skin is hyper sensitive to sun and to chemicals and is easily cut. I also bruise easily. This disease use to be refered to as the "Rubberband Man Disease". I use crutches at home, and a wheelchair once I leave my home. EDS has also caused me to have Mitral Valve Prolapse and TMJ. Most recently is has caused hearing loss and I am now hard of hearing. There is a chance that in the furture I will be deaf. So I am currently learning sign language in an Interpreter Training Program.

I am totally into answering questions about this rare syndrome so ask away .

faeflora

faeflora - can I pick your brain a little. My dear sister died of marfans. Our family was seen by a genetic md at NYU Cornell, part of the Marfan clinic there. The md told me there are like 200 connective tissue disease and she didnt know which one my mom had but definetly had 1 of them. I am interested in your immediate relatives showing any symptoms such as these: and I should add not that they were not fully diagnosed with the marfan syndrome : I am asking because my one ds has symptoms like chest pectus , decreased knee cartlidge, one ds has the arched palate, nothing with 3rd ds yet. I also had some surgery and asked a dr. to look inside and see if he saw anything related to marfan. He said he didnt. Thanks.

 

[faeflora]

Sure no problem. I was diagnosed with EDS only because my parents were with me at the exam.
Dad is almost 6 foot tall, he has a caved in chest cavity which has caused serious breathing problems, he also started about 10 years ago to slowly loose motion in his fingers and he is very stiff. My mother has very flexible loose skin that is very delicate and has never healed fully from her galbladder surgery and probably never will, she is getting to the point that she really need a wheelchair but won't get one. To proud or stubborn I guess.

As for relatives:

my double first cousin has had significant problems with weight distribution, recurring breaks in the bones in her feet, delicate skin and issue from minor sublux.

my other double first cousin had alot of problems with her joints growing up, continual pain, structure issues regarding weight bearing and easy bruising.


I think I ended up with the more pronounced EDS hypermobility since I have shown more subluxations than anyone else in the family. I also moved the fastest through the stages and got my wheelchair first.

Both of my parents in the past 20 years have shown hearing loss most profound is my fathers hearing loss. I would be second and mom third.
My cousins at this time show no hearing loss.


To the best of my knowledge the only problems my cousins have had with their children are related to allergies.

Hope this helps and ask more question if you want it is totally cool with me.

faeflora

 

[mommie2angels]

Ya'll are an amazing group!!! Just when you think it's oh so bad in your own world you meet others that give you courage. Thanks ya'll!!!

Well my dh and I have three beautiful daughters. Our oldest daughter is 11. She was not reaching her developmental milestones at the correct age so she had a muscle biopsy when she was 9 mths old. We received the call on her 1st birthday telling us that she has Mitochondrial Encephalomyopathy. We were told that she would not live past the age of 3. She just celebrated her 11th birthday in March. She stopped breathing for the first time at home when she was 13 weeks old. I began CPR which we had to learn before taking her home after her first two weeks from the children's hospital. She stops breathing anywhere from 4-15 times at night. Sometimes it's obstructive apnea where we can go and repositioner and she will start breathing again. Sometimes it's central when her brain just doesn't tell her to breathe. All we can do then is pray her brain kicks back online. She is on a monitor so that we know when she stops breathing.

She has seizures which are controlled right now. She is medically fragile and has lots of respiratory issues including reactive airway disease. She is completely dependent on us. She is in a wheelchair and is non-verbal. She has come very close to dying 3 different times. She is such a fighter and thankfully God has more work for her to do here.

Our dd#2 is 6 years old. She had her first seizure when she was 3 weeks old. When she was 2 mths old she was diagnosed with Aicardi syndrome. Aicardi syndrome affects 300-500 girls worldwide. She is missing her corpus collosum which is the middle part of the brain that links the right and left hemispheres. She is legally blind in her left eye, luncaes on both eyes and under developed optic nerves. She has uncontrolable seizures daily.

When she was 12 mths old she was diagnosed with Angiosarcoma. A rare form of cancer in children. It was on the top of her foot. We have pictures of the tumor the night before it was removed. The doctors have told us it's like looking at cancer on the outside of the body. She had two surgeries to try to remove it. They were unsuccessful and she had to have her leg amputated. She was supposed to go through 6 months of chemo but she almost died in her 5 month and treatment had to be stopped. May 21st she will be a 5 year cancer survivor.

We were told after dd#1 was diagnosed that her Mito disease was a sporadic mutation and the chances of it happening again was very rare. We decided 6 years later to have another child. The Mito disease and Aicardi syndrome are not linked in any way. We have been through our 3rd genetics team. Each time we are told that this is medically impossible since the two things are so rare. If there is a link that would help families and children in the future we would love to find out what that is. Otherwise we have accepted it, know we are very blessed and continue on.

We decided to have another child. DD#3 is perfectly heathly and doing fine.

 

[sneezy1956]

Wow I almost don't feel like I should even post after reading everyone elses. You are all amazing folks!!!!!!!!

I have Rheumatoid arthritis, Sjogrens Syndrome and Fibromyalgia and Asthma.

The RA has caused various bone deformities and a couple of surgeries. I have had most of the toes on both feet fused which makes walking painful but much better then it was. I'm looking at having my ankles fused sometime this summer if we can't get the inflamation controled.

The Fibromyalgia causes lots of pain on top of what I experience with the RA and the Sjogrens causes me not to produce tears or saliva.

I use a cane most of the time at home and an ECV at Disney. I just can't walk the miles I need to at Disney.

 

[Figment1964]

My very sweet, typical-looking DS (10.5) has Asperger’s Syndrome, AD/HD and Dyspraxia. Asperger’s Syndrome (AS) is an Autism Spectrum Disorder and there can be many different issues for children who have the diagnosis of AS. He struggles with transitions and the need for sameness. His social skills are that of a much younger child although he’s academically at, or just a teeny bit below, grade level (5th Grade). He has a normal intelligence but excels in his thinking skills involving writing, spelling and science.

He has difficulty reading body language. He’s sensitive to sounds, although since we’ve been on a gluten free/casein free diet that has diminished greatly. He wears earplugs in areas where the sound will either be too repetitive or too loud, either are like fingernails on a chalkboard to him. He sees the world very differently from the rest of our family, with an extremely high sense of right and wrong, very “black and white” with no room for anything that might fall into a “gray area”. He’s very literal in his thinking and it is nearly impossible for him to be able to think about something from someone else’s point of view. His behavior that seems odd or unusual are due to neurological differences and not the result of intentional rudeness or bad behavior. Too much stimuli (noise, too many people, lots of lights flashing, too many smells, etc.) can send him into a “meltdown” where he just isn’t able to hold his emotions together and will fall apart. He can get verbally aggressive, although that has gotten much better with the diet, too. He’s not been physically aggressive, thankfully. AS children tend to be naïve and can be victims of bullying and/or teasing.

His language skills on the surface appear normal but he does have difficulty understanding pragmatics. He has difficulty using language in a social context. He will talk about his area of interest regardless of the other person’s interest, but doesn’t reciprocate with listening to what they want to talk about.

His Dyspraxia is a fine motor skill deficiency. He has a weak pencil grasp and cannot write with any real clarity. Typing is also difficult for him but he is learning as best he can. He has an odd gait when he runs, almost duck-footed. He is not coordinated enough to participate fully in team sports and we’ve yet to discover any individual one that he’s interested in. He cannot ride a bike, even with training wheels. The motions of pedaling, steering and moving forward all at the same time are too much for his brain to be able to deal with right now so we’re working on each component one at a time (exercycles are great!). Using scissors is a hard thing, and he can’t tie his shoes.

He is in a mainstream classroom with an assistant available to help him if he needs help. He goes to the resource room for specialized math help and he takes part in a friendship group with the counselor at school to learn how to be a friend.

 

[mommie2angels]

Figment1964, has the diet been good for your DS? Was it hard to get him started on it? Our dd#2 is autistic but because of her other medical problems we have not tried the diet.