Our journey through autism

Posts tagged ‘awareness’

Horse Riding

Back in Janurary I wrote this about Equine Therapy at the time I didnt know that there was a difference between hippotherapy and something called theraputic riding.

Hippo-therapy or equine therapy is done by a certified physical therapist and they carry out physical therapy but the horse is an aid for skill learning and they carry out all their goals but atop the horse. They sit backwards or sideways for balance training, they stick their arms out, they lean forward, sideways or backwards to grab items etc.

Therapeutic Riding is riding a horse as best as an individual can with their disability, they learn riding safety, compassion towards the horse and they create a bond with the horse and the whole experience helps calm a child on the spectrum. The teacher isnt a certified therapist just someone with knowledge and experience both with horses and special needs. Theraputic riding is more widespread and common.

Both are beneficial to a child on the spectrum but hippotherapy is more intense, and because of the presense of a certified therapist it is almost always covered by insurance.

Bilal was doing theraputic riding as Lynn Bretcht isnt a certified therapist I asked her about the difference between the two, she explained it to me and said that even though she isnt certified she was still carrying out the same goals as in hippotherapy, her son Dustin has Downs and was in therapy growing up, he did/does Speech, OT, and PT and she used to observe his sessions and took ideas to use with horse back riding. So technically Bilal was doing theraputic riding but it was more like hippotherapy.

Children’s Therapy Works (CTW) the center where Bilal takes his OT and PT trained their physical therapists in hippotherapy and riding, and in April started giving sessions at a farm. Worried that Bilal would have a repitition of services between CTW and Bretcht Stables I told Lynn that she could teach Bilal basic horse back riding skills and no longer offer him therapy as he will be getting that with CTW, she agreed and we got him riding boots and he’s learning to “post” and steer, he may learn a bit slower but as she had 3 months with him in therapy she knows him well and can adapt his learning to fit him.

The only difference between what he was learning and what he’s now doing is in hippo is that instead of sitting in a saddle with stir-ups he’s just sitting on a saddle blanket, its much harder and this teaches him balance and really strengthens the hip/waist and core muscles. I think doing both hippo and horse back riding lessons has greatly strengthened Bilal’s core and posture and maybe one day he can be a rider maybe compete in special Olympics or other competitions.

Autism Awareness Continued…

So yesterday was World Autism Awareness day I followed the hash tag on Twitter, re tweeted some posts or links, copy and pasted some links from the Autism Speaks website on to my Facebook for others to know more about the disorder. Then in the late afternoon we went out, we all dressed up in blue and went to Home Depot and got our light bulb. Our patio just has the one light bulb and its not very visible but we lit it up blue and it felt good to share in this with the rest of the ASD community even with something so little as a light bulb and some internet time. Here are a few pictures or links I found interesting yesterday.

 

Pictures, these are my own:

Home Depot: http://instagr.am/p/I7yPSaHbX7/

Light it up blue: http://instagr.am/p/I8HCvKHbcg/       &      http://instagr.am/p/I77U3FHbaD/

 

I was proud to find out that Egypt participated as well by lighting up a couple monuments including the Giza pyramids in blue in recognition of Autism. There is an active chapter that strives to educate and integrate the public with autism, true Egypt has a long way to go as most doctors and pediatricians do not check for developmental skills of infants and toddlers during well check-ups, a well known speech pathalogist even said that autism is just an excuse parents use for not teaching their child to speak and communicate properly, but all in all its a great step forward for the region.

 

Don’t forget that April is Autism Awareness month, so you still have time, Toys R Us, Babies R Us, TJMAXX and I’m sure other retailers are helping with donations, because of spring and the great weather you can find an Autism Walk near you to participate in. Everyday can be autism day, you can donate time or money any day of the year. With 1 in every 88 children affected by this disorder its the least you can do, just understand us and recognize the signs.

Autism Awareness Day

Today is world autism awareness day, a day to help understand this disorder to inform, to help fund autism research and to appreciate the 1 in 88 children and adults affected. People are urged to wear blue today to display autism puzzle piece pins on their clothing, and mainly to install blue light bulbs in their windows, patios, porches and balconies.

I’m not sure yet I’ll personally be doing to celebrate, its spring break and we don’t have any plans today, but I might just dress the boys and myself in blue and go to Home Depot to buy a blue light bulb and put in out on the patio and light it up tonight. Other than that I’ll try to be active on Facebook and twitter.

Come on:

 

LET’S LIGHT IT UP BLUE!

 

Check out this page:

Autism Speaks: http://www.lightitupblue.org/Markslist/home.do

Light it up blue pdf: http://www.lightitupblue.org/Markslist/documents/resources/2012%20LIUB%20Participation%20Packet.pdf

Autism Prevalence

http://www.autismspeaks.org/science/science-news/autism-prevalence-rises-1-88

 

Chances are you directly know someone affected by autism 1 in every 88 children, that’s every school and class, 1 in every 54 boys, something must be done. April is autism awareness month, learn the signs, find treatment and help fund research to help those affected now and for our future generations. April 2nd is international awareness day, light it up blue is the slogan, wear blue and support those precious families.

Wandering

Wandering and getting lost is a fear any parent has, whether with autism or typically developing. The worst pains a parent can go through is to have their child missing not knowing whether they’re safe, dead or alive. May God protect our children from any harm.

Wandering is a common threat to autistic children. The children dont know that they’re doing it, they’re in their own little world and get easily distracted, they may follow something they find interesting unaware of their surroundings and where their family has gone. The child being non-verbal or with limited speech is at even more danger, unable to tell a trusting adult any useful information. Some parents will label their child’s clothing or acquire one of these. There are several stories in the news of children going missing or wandering off, and the ending of those stories have gone both ways.

Alhamdullah I dont have that problem with Bilal but it is still something I worry about and whenever we go out we keep a very close eye on him, reminding him constantly to stay close by and we’re thankful that he’s recently learned his full name and age, I know at this age he should know his address, phone number, parent’s names and phone numbers but we’re taking it one day at a time and making sure he’s always safe. I have 1 wandering story for Bilal that took place the day before his second birthday. This is copy and pasted from a journal I keep that I wrote soon after the event.

“We were in Saudi Arabia at the time and lived in an apartment building, you’d have to go up a flight of stairs to reach our apartment. So I was in the bathroom emptying the washing machine preparing to hang the clothes up to dry, hubby was outside at his desk working on some accounts. The doorbell rings incessantly and I can hear my 2 year old crying pretty badly, thinking that maybe the sound of the doorbell surprised him as it did me, we weren’t expecting anyone at all, he’s usually so excited when it rings, I let my hubby answer the door, a bit later he comes to me carrying our son saying the guy downstairs just brought him, he was out in the street. Oh my! I was shocked but my typical self doesnt react at the occurence of an event, usually afterward I might break down and cry, let it all out …. I could see that he was unhurt and all I said at the time was “the cat must have followed him outside too” so my hubby goes and finds the cat outside hiding under the stairs.

Later that day as I was preparing dinner I let it all out and cried some imagining all the stuff that could have happened but thankfully hadn’t… if he was really in the street like the guy that works in one of the shops downstairs says then he could have easily been hit by a car, he could have easily been taken by someone, and as he went out barefoot he could have stepped onto something sharp and hurt himself. I imagined myself talking to police telling them what he was wearing and showing them recent pictures. He also had a poopy diaper and was in a onsie, totally appears like neglectful parents, we arent, always have an eye on him but for some reason neither one of us heard the front door opening. I felt horrible, and kept thanking God that nothing happened and that he’s safe and sound. I think it was a wake up call to be more careful and thankful and not take anything for granted. After I changed him and washed his feet, hubby took him to the door and very sternly told him to not open it again and that it was a big NO NO. The whole event kinda scared him, even before we reprimanded him, he was crying and seemed shook up, he’s not really used to strangers, so i’m sure the guy that brought him up scared him as well.

The cat that I mentioned isn’t even ours, we were kitty sitting for a friend of hubby’s while he goes on vacation. So the cat could have been hurt or taken as well, also to make matters worse is that the cat is in heat and meowing so loudly for a tomcat that she could have been impregnated by a stray, but thankfully that didn’t happen either.

What I think happened was that my son was playing with the door and it opened and the cat ran out, or the cat being in heat was hanging around the front door maybe even reaching out for the handle, so Bilal may have opened the door for her, so he ran out to follow her, when the guy downstairs saw him, the cat ran and hid under the stairs. I don’t think he would go out barefoot and on his own down a flight of stairs and outside of the building like that. He knows that he needs to get dressed to go out and he wouldnt go so far alone, but you never know really. So we installed a chain to the door and keeping it shut at all times and praying that nothing like this ever happens again God willing.”

I don’t think I need to remind parents to look after their children and keep a close eye on them, especially if your child is on the spectrum they need even more attention.

 

Please read this for more information: http://www.sciencedaily.com/releases/2011/04/110420143702.htm

A Dream

I have a couple dreams I wish would happen. I wish for an accurate cause and cure for autism to be known. A lot of parents of autisitc children or any child with a disability would say they “wouldnt change their child even if a cure were discovered” Maybe I havent reached that state yet, weak faith, I dont know, I want a cure for autisim. If my son’s sweet, kind, forgiving nature is a symptom of autism then no I wouldnt want to cure that. But I would love to have not gone through that difficult behavorial phase, not to go through the devestation and stress of getting the diagnosis, I would love to be able to understand my son whenever he told me something, get rid of the frustration from both sides, cure his picky eating and limited diet habits, eliminate the odd humming and pacing. I would like a cure, so he would never be bullied for being different, a cure so that he can have friends and meaningful relationships, a cure to avoid stares or weird looks from others. This is all a dream, I cant go back in time and change anything and if a cure really were discovered or created I dont know whether I would line up for it or not, if it were to happen for real.

As there is no cure yet, this dream seems more attainable. Like I mentioned before, doctors and other parents will tell you once you get the diagnosis to seek a local support group, to talk with other parents that have been there, to find children similar to your child and set up play dates. I couldnt agree more with this. Most parents turn to their house of worship. I’ve read about several church based services, daycare options, playgroups for families with special needs. Here in Atlanta there is a large Jewish Autistic community also offereing the same services. Sadly there is no Muslim autisitic or special needs community for me to turn to. I’ve searched online countless times and find that Islam and autism dont go together for some reason. I’m seeking fatwas (religious decrees) about what my son’s religious responsiblities are, how much is he accountable for and what my role as a parent should be with teaching him his faith. I’m looking for other parents to learn from and see what they’ve done. They either dont want to communicate or are not on the world wide web. Its in the culture of many Arabs or Asians to see a disability as some kind of taboo, not seeking a diagnosis or hiding the child in shame, they lack awareness and its been said a lot that they think autism is  a form of mental retardation, which it obviously is not.

I dream of organizing an awareness campaign with the local mosques, maybe hiring a speaker from Autism Speaks, printing out fliers or brochures, having recources translated into Arabic or Urdu,  explaining to parents what the early warning signs are, urge them to have their children evaluated, that its nothing to be ashamed of, and maybe then I’ll find other families to form relationships with. I also wish that Arab doctors would get the training to recognize the signs to explore the area of developmental science that treating a child for physical illnesses is not enough, for Arabs to become therapists and special needs educators. Islam teaches us to be accepting of all races, ethnicitys, social backgrounds and of course mental capabilities, but sadly they show discrimination, they need to learn neuro-diversity. Its a term I learnt when I started joining the social networks of autism. It means that the same as we are accepting of different skin colors we should also be accepting of the different neuro development of others, of autism, Aspergers, Tourette, ADHD, these are all neuro-developmental disorders. Just like the color of their skin they were created this way and cant help it, its not the parents fault its nothing to be ashamed of. Since my son’s diagnosis, I’ve become more accpeting, when I see a child misbehaving in public I no longer think to myself “these parents have spoiled their child” I say to myself “this child may have some kind of disability and the parents are doing the best they can”.

I’ve met a mother from a Facebook group with a 4 year old son, with suspected Aspergers (she still hasnt received an official diagnosis) she was saying the same about not finding other Muslim parents outspoken with their children’s special needs, about the Islamic community’s lack of awareness. Her son’s application for a Pre-K program at an Islamic preschool was rejected, they said they do not deal with special needs, they said this without even understanding what his needs were. He has since been placed in a private pre-K school, in a regular class with a once weekly special needs teacher checking on him and he’s doing great masha Allah. This mother also dreams of starting an awareness group and maybe one day the both of us can make it work bringing awareness to the Islamic community and helping other parents seek the support they need.

This is the autism awareness ribbon, and April is national Autism Awareness month.

First couple of years

I mentioned Bilal’s early development as in health and reaching milestones. I will discuss other things of importance in this post.

What did I know about Autism before we ever suspected anything?

Like most parents with autism they will answer that the only thing they knew about autism is what they saw in the Dustin Hoffman, Tom Cruise movie “Rainman” in that movie Dustin Hoffman had autism and because he had harmed his little brother Tom Cruise by turning the hot water on him in the bath the parents had no choice but to place him in an institution, as an adult he seemed to be in his own world, didnt have any facial expressions, didnt like to be touched, didnt like to have his routine altered in any way and had the genius gift of arithmetic and counting, but didnt understand the concept of time or money value.  Other things I thought I knew about autism is that the child didnt show any affection, never smiled, hated to be touched and was difficult to deal with, I had seen the Oprah episode with Jenny Macarthy and followed lightly the whole MMR vacccination stories in the news.

I believed the MMR theory and had decided as I had a boy with higher chances of getting autism that I would postpone his MMR vaccine and have him take it at the age of 5 after the risk period of autism.

With all that I read I felt for some reason that it cant possibly happen to us, that my little boy was affectionate loved giving hugs and being carried, smiled, laughed and giggled, was well behaved and was a smart little boy, he cant possible ever have autism.

Early warning signs that we missed

Bilal was an easy baby, other than the reflux/vomiting there were no problems, he slept through the night (12 hours) at 8 months old and he ate whatever was offered to him, he learnt the meaning of “NO” at 7 months and didnt play with what he wasnt supposed to, I felt really lucky with his behavior when I saw how other children close to his age were acting like.

I read the “What to Expect” series from pregnancy until the early years, as most of you know the books are written in question/answer format and I liked the easy direct approach of the book and read it each month. So I remember one of the questions was about “toe-walking” a mother was concerned about her 2 year old walking on her toes, the author answered that it was normal for a lot of toddlers to walk like ballerinas and it was just a phase as they improve their balance and learn to walk properly. Bilal walked on his toes a lot but not too much to be a concern.

Bilal spoke his first couple words at 12 months, ota (cat), mama, baba, nanna, baby, and a whole bunch of animal sounds like moo, maa, meow, woof, tweet tweet, etc. That was it, nothing more and I knew he was a late speaker but again the “What to Expect” series stated it was normal for some children to be late speakers, and Bilal had every reason to be one, early walker late talker, an only child that didnt get to see other children his age much if at all, independent and stubborn, also having heard so many people say that children in Saudi Arabia usually spoke at 3 or 4 years of age, that so and so knows someone who didnt speak until the age of 4 and they were totally normal and nothing to worry about, Einstine didnt speak until he was 7 and stories like that.

I have a friend with a son 2 years older than Bilal and she would go on about all the crafts she worked on with her son and all the books they read, I couldnt get Bilal to do any of that stuff, he hated coloring, didnt enjoy Play-Doh, lost interest quickly and didnt sit long enough to complete anything. He wasnt interested in books at all, he wouldnt listen to the story and just wanted to flip the pages of the book. I thought that was just his personality more interested in running around and such and gave up trying.

Like I mentioned Bilal was well behaved and I didnt have any trouble with him, even when he became 2 I didnt feel like I was going through the “terrible twos” all that started changing at 2 and a half, thats when he became stubborn, threw tantrums when a toy didnt do what he wanted to, screaming and crying and throwing the toy across the room. I didnt know how to play with him, he wanted to do his own thing, and all that I imagined motherhood games were like just didnt work with Bilal. It was very frustrating, it felt wrong but I guessed it was due to him being a boy, going through a phase or because I was pregnant with his brother and just tired and not really in the mood.

Humming – When Bilal was less than a year old, he had this humming sing song chant that he would do over and over all the time, we thought it was cute how he always said it in the exact same way. As he got a bit older that chant stopped but he would hum while he ate his cheerios or Goldfish quite loudly  but again we thought it cute, and just part of his noisy nature. This probably is our earliest sign that we missed.

Going to the doctor with Bilal was always a problem, as soon as we walked in to get weighed or measured he would start screaming and stiffening his body, the doctors he went to all treated him kindly and patiently and I noticed other kids his age werent carrying on in the same way, it was just odd. That greatly improved when I got pregnant and he came with me to all my doctor appointments and he saw that I didnt cry or scream and it wasnt really anything to be afraid of. Of course he screams and stiffens with shots, and ear check-ups. Another thing I want to mention is since birth giving Bilal any type of medication or vitamin was impossible until this day at the age of 4 I have to add it to his juice or milk when he was younger, he would either vomit, spit it or totally reject any medication or vitamin any flavor or shape.

Sticking to routine – I didnt feel Bilal had a problem with change of routines, we ate out a lot, we stayed in hotels, lots of traveling and he would be fine, the most important thing is that his dad has to be with us and his lovey Ota. Whenver we traveled without his father his behavoir would be very difficult and a lot of tantrums and such. He sticks to a routine when it comes to his eating or drinking habits, certain cups, plates, brands and method of eating, very picky, a short list of accepted foods.  When we quit the bottle at the age of 2 he quit drinking milk, he wouldnt drink it in the cup no matter what we tried.

Head banging – Bilal went through a phase of head banging when he got upset especially when I denied him something he wanted, he would scream and bend down to the ground and start banging his head, I got really stern with him and would shout out “NO head banging” this lasted for only a week, and he would then bang his fist but that also phased out. Like I always I turned to my “What to Expect” book and said that head banging was a normal way for toddlers to express their frustration pre-talking and its a phase that will pass, as it did pass with us I didnt think twice about it.

Attachment to lovey – Bilal has a stuffed toy cat, I bought when I was still pregnant it was the same colors as the cat I had when I was a teenager and the beginning of my pregnancy I had so many kitten dreams thought getting the baby to come a toy cat would be cute. His first word was cat and by 12 months he fell in love with it and was obsessed with the toy, he hugged it in his sleep and held on to its tail in his sleep he would search for it, I was able to set the rule cat stays at home, we only took it with us if we were spending the night out. All that’s typical of most children the odd part was he would bang it against his cheek and hum, or rub it against his tummy or soles of his feet and as he got older he got more and more attached to it.

Nightmares – A lot of those evaluation forms you’ll fill out ask about his sleep habits and nightmares, I mentioned before that I had no trouble with Bilal’s sleep, he slept through the night in his bed in the dark with the door closed no problems. At the age of 2 we went through a month of nightmares, he would wake up between 2-3 am screaming and running to our bed, he would sleep the rest of the night in between us. This was every single night for a month and we had no idea why, my husband suspects he got scared from the Disney “Christmas Carol” movie, Uncle Scrooge was afraid of the Ghost of Christmas Past and he did go through a phase of fear of his shadow, we dont know for sure though. Around that time we decided it was time to get a new bed for him, he’s been climbing in and out of his crib for a few months now and with sleeping sideways a lot the crib was getting too small, as soon as he moved to the new big bed the nightmares stopped…

So these are what turned out to be early warning signs of autism that I missed and didnt know about. I had an excuse for all those behaviors and was in denial that it could be anything more serious, its all just a phase of growing up, terrible twos and it will pass.

I suggest that all parents educate themselves about autism and early warning signs even the minor ones, yes it might just be a phase and it passes or it might be autism and early intervention is the best treatment. Wipe out denial and trust your instincts, question doctors, get second or third opinions, read and research and educate yourself. You might not need this information for yourself but you could help another parent by showing them what you’ve learnt, we need to fight this disorder together, affected and non-affected families. So far as there is no cure the best treatment is early intervention, getting the required therapies earlier that’s when they make the biggest impact. Doctors say we’re lucky we started treatment at 3 years, but I wish we had started earlier as soon as the speech delay was obvious and not wait it out and see.

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