Our journey through autism

Archive for the ‘awareness’ Category

Save Dustin’s Place

This is my first campaign like post. Personally I don’t support or am passionate about much, especially something political. This though is autism or special needs related which I am passionate about.

My friend Lynn over at Brecht Stables and Dustin’s place is facing closing her doors if not enough money is raised to fix up her place to meet county zoning criteria.  Her full story and donation page can be found here.  Yes it is true that we quit horseback riding back in June, but that was only due to the distance and for Bilal moving on to discover new things. I have no complaints about Lynn’s program. She was amazing, she’s doing it all on her own with volunteers, she tries her best to accommodate with people’s schedules and the weather. She serves all children of all ages and with all capabilities or disabilities. Her son Dustin who is about 12 years old now was born with Down’s Syndrome and had several health issues when he was younger, he needed all types of PT, OT and Speech therapies, Lynn observed the therapists and took all that information to helping her son herself with the use of horses which she’s always loved and grew up with. It has helped his strength and progress amazingly that she decided to help other special needs children. I’ve seen children with Downs, autism, ADHD, Muscular Dystrophy and Blindness enjoying the horses and the program. She also teaches typical children Western Horseback Riding. She teaches all ages, she worked with Sulayman when he turned 2 and picked up a lot of little basics. Horses are amazing creatures and there’s something about riding them that calms children down and helps them progress.  She organizes and takes the children to the Georgia Special Olympics and other Horse Shows. She runs a summer camp, and she boards horses. Its a lot of work for a single mother of 2 boys but she manages and does great. I’d hate to see her close her doors and turn away all these children who can benefit so much from her programs.

 

Please try to help her, every little dollar helps her get closer to her goal of $11,000… she needs to plant trees as a privacy fence between her place and her neighbors so a donation from a grower, planter or gardener business would be great.  Please hurry and share her page with others and spread the word, because time is running out.

 

Bilal’s history with horseback riding can be found here:

Equine Therapy

Horse Riding

Horse Show

 

 

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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

Where we are in our journey

Bilal is now 4 years and 1 month old. Since he turned 3 he has progressed a lot. When he first turned 3 there was still some regression, his baby brother was born, starting daycare, and lots of traveling all that would be difficult on a typical child more so one with autism, he’s come so far from “eh eh eh” with pulling and pushing to several full sentences, to refusing to feed himself to doing quiet well with spoon and fork. He has mastered the use of the computer, by typing his name to login and opening Internet Explorer and visiting his websites. Disney Junior, PBS, and Starfall playing videos, or games I think he’s even found a couple more websites he enjoys visiting. He knows his numbers from 1-20, he recognizes the letters of the alphabet in both capital and small, he enjoys looking at story books now, learning to write, he does a really good capital J. His teacher says he is communicating and playing well with his classmates and calls a couple of them as his friends, he’s making progress on all his IEP goals and I guess most comforting to me is his behavior has improved a lot, we seldom have out blown tantrums or meltdowns, rarely have any more head banging or screaming, I cant remember when I last saw him toe walk. He loves his little brother, lots of “big hugs” during the day, they laugh and play together and often times Bilal would help out when Sulayman starts crying asking for his bottle and giving it to him. Alhamdullah its been a good year and I’m optimistic and looking forward to more progress insha Allah. We still have a long journey ahead of us.

 

I am unsure what I want to write down exactly, The difficult part I believe is behind us and we will continue forward with more therapy, with school, IEP’s, and whatever sound treatments come up in the future. I still dont know what else I want to do with this blog, I’ll still write about therapy sessions, I want to write about Bilal’s little brother, I want to share articles I read online, new findings or studies on autism that seem to appear almost everyday now but with still no clear underlying cause or cure. I want to mention therapy centers we visit, the therapists, and doctors we’ve spoken to, to help in a more local way. I still dream of bringing awareness to the Muslim community, I wish to make a close true friend who’s been there and possibly our boys could also become friends. I would like suggestions and ideas from any readers of the blog, I really want to make this blog worthwhile for me and for anyone visiting. I hope I can achieve all that and I hope you’ll stick around for more and to help out as well. Thank you.

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