I wanted to reach out because I don’t know a single desi family with a special need child in NY/NJ area and there are times when I feel very alone in that regards. It is also a struggle to make other desi parents with typical kids understand his situation and his needs. The worst thing is when people make comments on how this could have been prevented if I paid more attention to him. We even get wierd looks in the mosque when he is stimming or showing certain other autsitic behaviours.
I was wondering if there is any platform which South Asian parents, with special need children, can use to socialize or hold play dates.
Welcome Jiya! I have a 9 year old who is on the spectrum and classified as special needs. My youngest, 6 now, is also on the spectrum but so mildly that he no longer meets the diagnostic criteria for the diagnosis. We are in New York, not far from the city. I’ve not heard of any South Asian specific groups, its hard enough to find playgroups without specifying ethnicity!! It can be really difficult dealing with relatives and friends who have absolutely no idea what Autism Spectrum Disorders are…but when they say that its due to lack of attention, this was the theory back in the 1950s and 1960s!!! They referred to the mothers of autistic children as “refrigerator mothers”!!! Sheesh. Perhaps you can buy a few copies of books like Jenny McCarthy’s “Louder than Words” and pass them along to those who need to get more of a clue. Buy a copy of the movie “temple g*****n” and have a ig movie party. This will help to increase understanding. Print out some fact sheets about stimming and keep them in your purse to pass around when you get comments and odd looks from people who dont understand. They’ll likely beleive and acccept this more readily than they would explanations from you.
JD, sorry to know that you are having disappointments within the desi community. I would suggest you not to confine yourself within the desi circle, rather reach out to all the societies that are related with Autism. I’m sure you’ll be welcomed and helped much effectively than our desi fellows. I’m 100% sure there are many available.
There are a couple of things you can do, and apologies in advance if this is stuff you are already doing.
I am assuming he is in early intervention, if so, talk to his teachers and therapists and they could ask their network and find out
and organisations that work with special needs kids, reach out to them, and maybe attend their events, in many cases they have programs for special needs kids set up sports, arts, music, etc, and that would
last, do not limit yourselves to desis only. I understand the desire and need to be with people of similar background, but dont let that be a prereq.
Jiya - I have a daughter on the specturm as well. She'll be 4 soon. I have not come across ANY south asian platforms for parents with kids with special needs.
Being desi - I have seen and heard all. Why is she like this? How it could I have prevented this? People have said this to my face - "she's autistic because you work and you clearly don't spend enough time with her". Relatives have said that "That's not what autistic kids look like, and I am crazy".
It comes from the lack of knowledge to what autistic behaviors are and aren't.
I too feel alone sometimes and when she was diagnosed I had the "why me" syndrome for about a week. But I quickly realized that I will have to be her biggest advocate.
So I have to be informed and I have educate people around me. For the people that have questions - I answer them.
I am trying to make a network of support for herself and myself as well close to where I live.
I would start with his school. Ask the school board. I take her everywhere to the masjid, desi parties, park etc. There are wonderful summer camps that I was researching for autistic kids to expose them to outdoor activites.
Its lack of knowledge, its fear that it may somehow be contagious, its fear that theres something wrong in the family genetic makeup, its fear that having a child with special needs will affect the entire family and any subsequent rishta-seekings once word gets out. The "blame game" runs rampant!! I've developed a tough shell, I've heard it all - since I'ma gori married to a desi, of course the tongues were wagging. It musta been all that bacon or the pork chops I ate when I was a kid that caused all of this lol!!
The desi community is sadly lacking resources, in acceptance and in understanding. HOW I'd love the lifestyle in Pak but it would never be an option for us with the glaring lack of schools, therapists and resources for children with special needs.
Anyway, the local school system really is a great place to start asking and seeking a support system, playgroups etc. As for the un-enlightened, become a walking encyclopedia and just keep on keepin on. Either they';ll get it or they wont. If they dont, its their problem, not yours.
Njgal, you're right for sure. Jaws just drop when I start talking because I'm so very open about whats going on with my boys. I talk about autism spectrum disorders, stimming, speech delays, sensory integration etc etc. I figure heck, if they're going to have an opinion about it all then they're going to get an education about it too - like it or noT!!!!
Thanks for so many good tips. He has been getting services for last one year and going to ABA based full time school. I see some improvements but they tell me it is a slow process so hoping for the best.
I am pretty open in discussing his situation with anyone who seems curious. But most of the time people are just judgmental and I find myself being defensive, which is just sad.
Yes we are already enrolled in community organization that hold events for special need children and his school is a great resource to find other parents who want to socialize.
@njgal you must be researching camps in NJ, I found some good ones in Westchester - actually he is already going to a swim class and class which has great coaches and he gets one to one attention.
You are so right that we are their best advocates for them and it is horrifying thought to me that how the world will treat them once we are not there to support them. I really hope all the parents of special need children live a long healthy life :)
@Mamaof3 Does it get easier when they get older? I saw Temple's movie a couple weeks ago - it is so inspiring - I hope all of our children get to lead a happy i life. I have not read Jenny's book but I researched into DAN and various food therapies. Not sure we are too ready for that for one my son just eats four things. That whole aspect of policing what hes eating scares me.
@X2 Yes you are right but I am always curious to find out how other desi parents are coping. Did they have other children? What do they do when they visit Pakistan/India?How do they explain their children behavior in a mosque or restaurant to other desis?
It sounds like you're doing all the right things Jiya! I have to say that things do get better as they get older. My youngest is no longer classified as autistic and is attending regular-ed kindergarten where he is doing really great.
Oldest son has difficulties but has made significant progress too. His eating difficulties started in inffancy and were so bad that we took him to St Josephs hospital for pediatric feeding disorders. They put him in their intensive program - 6 weeks of full-day therapies. WHen we started, it was taking me up to 5 hours a day to get minimal amounts of stage 1 baby food in him. When it ended, he was eating a full meal of fork mashed table foods in 20 minutes!!! His speech is good, his attentiveness is really bad. His math skills are good but reading and writing are behind. We try different things as appropriate - we gave the GFCF diet a try and it didnt do anything for him but there are kids in his class that it does wonders for. We give him omega oils in his oatmeal and this actually seems to help him in school. He is becoming much more independent, picks out his clothes and gets dressed, I bring him to the school but he gets to class by himself. Having two brothers I think has been an amazing help for him. He learns appropriate behaviors better, he interacts with them, he learned pretend play because of them. He is a Cub Scout, he's on a junior swim team, he goes to a percussion club after school - all of these activities with "regular ed" kids. And they accept him. Yes, it does get easier!
As part of his IEP, he gets summer services which means extended school year. Does your school district have a summer program? If they do not and if your son qualifies for extended school year services, your district would have to pay to send him to an appropriate summer program. He gets some scholastics every day but also closely supervised swimming, outdoor activities and all kinds of fun and social things. If you cant get this in place for this summer, at least you'll have good info for next year.
There is also a wonderful camp for children with special needs called Victory Junction. This may be something to look into when he's a bit older because its a sleep-away camp. If chosen, he would go for one week to this really amazing camp - for free!!! Its fully sponsored by NASCAR and the drivers and the place is just a dream come true, esp for race car fans. They do a week for kids with down's, another week for kids with autism etc. They also have "family fun" weekends where the entire family attends (again for free!) for a 3 day weekend.
As far as getting odd looks out in public, I usually ignore. Your hide gets tougher in time. I've found that people are mostly just curious. There is a large population of special needs children in our town so thats been helpful. I joined the special-ed PTA (septa) in our district and met many really wonderful people there and learned so much about special ed and being an advocate for my son. On the other hand, when you get odd looks when you're in a restaurant and your boy is stimming, look them right in the eye and say with pride "He's my little Temple g*****n!!!"
Some great info for you Jiya…your child may well be entitled to summer school under Wrights law. If your school district does not have a program then they would have to send him to one - at no cost to you. You may have to fight for it but this link has everything you need to know…
Just saw this event adverised and thought you might be interested –
"Blue Hijab Day is Muslim Womens way of raising awareness about Autism and Autism Spectrum Disorders.
"Wear a blue hijab (or scarf or hat if you don’t wear hijab) on World Autism Awareness day: Friday, April 2nd. Muslimas Oasis will be providing flyers to print out and put on your masjid (mosque) noticeboard or anywhere else you want.
"There are probably millions of us with children on the spectrum, or who are on the spectrum ourselves, and there is not enough conversation about the Autistic Spectrum in our community. Let’s start that conversation the Jummah (Friday) of April 2nd 2010.
"Read more about Blue Hijab Day, print the flier (in English or Arabic) and the tag to pin on your hijab (or scarf or hat) to let people know why you’re wearing blue. Do all that here: muslimasoasis.com
Njgal, you're right for sure. Jaws just drop when I start talking because I'm so very open about whats going on with my boys. I talk about autism spectrum disorders, stimming, speech delays, sensory integration etc etc. I figure heck, if they're going to have an opinion about it all then they're going to get an education about it too - like it or noT!!!!
:) I just figure I have to stop complaining and start exhibiting behaviors that I want to change in the next generations to come.
@Mamaof3 the school district we are in seems pretty cooperating. He got the full school in summer without any issues. I cannot even imagine him having home that long and beside he loves going to school. The whole feeding fiasco with your son sounds a like a nightmare. But so glad to hear he has come a long way since then.
@Sahar02 Thanks for the tip .. I will definitely participate
How did you guys potty train your children? He is still not and feels like a monumental challenge to me.
Jiya potty training was indeed quite a trial! Patience is key. My son was 5 when he was ready. Before that, he would get so stressed over the whole thing that he'd not be able to go at all for days. My younger 2 boys were an awesome help - they were actually all 3 of them potty trained at around the same time! Eldest son really needed to see his brothers go on the potty, that it was a safe thing and a good thing to do. Like Temple explained, autistics are visual learners!!
Let your boy see his dad go if your hubby is ok with that. When you go, tell him that you're going. Heck, if you're open to it, let him see you on the potty too. Buy a potty-training dvd and play it for him. The more visuals you can provide, the easier it will be for him to accept it as a safe and good activity.
hmm makes sense .. most of the things he learns is from TV or YouTube Videos. (ofcourse ABA)
I will try to get some videos and try the other tips as well.
Thanks