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Saturday, January 5, 2013

The Vital Importance of Getting Support and Networking

I mentioned somewhere early on, how impossibly difficult it was to find one other autism mom to talk to. I simply did not know of one autism mom in my neighborhood. Not one.

When I asked my service coordinator to hook me up with someone - ANYONE - she had no one.

It didn't make sense. It just couldn't be that I was the first mother in my neighborhood to deal with a child with autism. After all, TABAC was in existence for a few years already. So where was everyone???

During my long years of struggling with infertility, support was plentiful and easily available. I joined  a support organization within a year or so of my marriage and the support was incredible. Throughout all my struggles there were dozens of listening ears available, shabbatons, support groups, events with speakers - you name it.

How in the world was there no organization for parents of chidren with autism?

There were so many organizations that offered services like Res Hab, Respite, Summer Camp, etc. Why didn't I see anything about connecting mothers with each other?




Several months later, during the hakofos on Simchas Torah, I ran into a cousin of mine. Like me, she went through infertility for a few years, and then was blessed with a daughter... with Down's Syndrome. I was constantly amazed at her good cheer and energy despite the challenge of being a special needs parent after infertility. While I was not really telling "people" yet, I did confide in her, since she had this rare combination that I knew would be difficult to find. She expressed sympathy and told me about a support group that met regularly in the neighborhood. At the time I was not yet ready to officially join any support groups - Dovi was only 2 1/4 years old and it was still possible, at least in my mind, that he would improve rapidly and be mainstreamed within a year or two, and I didn't want to label him permanently.

Now, with Dovi's 3rd birthday approaching and the reality of the situation staring me starkly in the face - Dovi was not going to get mainstreamed anytime soon, and I was good and well officially the mother of an autistic child - I was desperate to find out more about this support group. But it wasn't really in operation anymore.

Spring came and the changing weather filled me a deep sense of deja vu and terrible sadness, as the memories of the year before washed over me in waves. I recalled those bleak early days of the diagnosis, of floundering along in the darkness, not knowing where to turn or what to do.

So where were we now, one year later?

Well, Dovi was still extremely delayed, but his eye contact had returned and he was no longer crying during therapy. He was enjoying it and was cooperating, and he was definitely more social and smiley. When the volunteer returned after not seeing him for two weeks over Pesach, he ran straight into her arms, giggling. When she put him down, he dragged her to the door, indicating that he wanted to go out. He was no longer the child "locked into his own world" who would not look at you. But he was still very much on the level of a 1-year-old.

Friday afternoons were getting longer and we needed to find a space to take the kids to play. My husband took them out to parks, but they also needed a change. That's when we heard about a new indoor playspace that had opened just a few blocks out of our neighborhood. It was a little pricey, but since we were going with only two children, it wasn't that expensive. The price tag also meant that it wasnt overrun with many other families. Dovi absolutely loved it. The freedom of running all over the big, empty spaces, climbing up and down those stairs, and coming down the long slide was just what he needed - frankly, what every child needs, neurotypical or not.

Image may contain: 1 person

Image may contain: 1 person

A little while later I put Dovi - and Chaim - on a vitamin regimen devised by Maxi Health. We saw amazing results with Dovi; he became calmer, more manageable and cooperative, and Ellen stunned me by showing me some of the things Dovi was able to do: identical matching, some non-verbal imitation, and so forth. I was amazed. Unfortunately the vitamins caused stomach upsets for Dovi and I found myself changing his diaper every hour. He was screaming in pain from a bad diaper rash but wouldn't let me apply diaper cream. It was extremely tough; an almost-3-year-old whom you can't explain what's going on and that you're trying to help him.

Along with more cognitive awareness came an extremely stubborn streak. He was gaining independence and got very upset when his demands were not met or when demands were made on him. He resorted to a new, unpleasant behavior: biting. The biting phase lasted through the summer. Many people got bitten; volunteers, therapists, res hab girls, and yours truly - badly. He still has these phases on and off and it's usually associated with cognitive strides; whenever he makes a lot of progress he gets agitated and frustrated over his inability to express himself and be understood and he can resort to biting out of sheer frustration. Ironically, sometimes he bites out of excitement, when he just doesn't know what to do with himself from happiness. But he has kind of learned to avoid biting people but bite objects gleefully instead.

So what does all of this have to do with support groups? Wait patiently. We're getting there.

It was around this time - in the spring - when I got a phone call from my new friend Sylvia, informing me about an exciting event that was happening a few days later.

Who is Sylvia?

Let me backtrack to six months earlier, when Hannah was still Dovi's short-lived therapist. One day she was extremely emotional, telling me that one of her students was graduating. "He is a true TABAC success story. He came in at age 3, and you could almost say he was more MR than autistic - that's how low functioning he was. He's 5 1/2 now and he's gained so much, it's amazing." I asked her what 'gained so much' meant - was he talking? Was he 'cured'? No, not at all. He still was not speaking. But he had learned a lot in 2 1/2 years. She was also excited because he had gotten his first haircut the night before. I was confused; in my circles, boys get their hair cut at 3. But this mother had opted not to cut his hair, knowing what an impossible tantrum he would put up, and only cut it at 5 1/2. Hannah told me that Dovi reminded her very much of Zevi; they were very similar with their autism levels, charming nature, and the way they behaved. She was hoping that Dovi would be TABAC's next big success story. I didn't consider being non-verbal at 5 1/2 a success; in my mind, "success" meant being mainstreamed. But I found it all rather interesting and wondered if there was any way I could get in touch with that mother. But of course, due to confidentiality there was no way she could hook me up with her. She didn't even tell me his name; I only overheard her talking on the phone with a fellow therapist and she used his first name only, Zevi.

Fast forward several months later. I was lamenting on Facebook that I was going crazy from the isolation as the only autism mom in my world and did not know where to find other women to talk to. Enter my Facebook friend Vicky. She herself has a special needs child - I don't think her child has an autism diagnosis, but the behavior and impairments are quite similar - and Vicky has a niece with an autistic son. She urged me to get in touch with her.

At first I kept procrastinating calling her niece, Sylvia. I kept pushing it off until the day I felt I desperately needed to connect with someone. I picked up the phone and called her. Within minutes I knew that we were talking here about Dovi's 'double' - the 'Zevi' Hannah had been talking about. But our lives and stories were very different; Sylvia had a houseful of children, and Zevi had not been a regressor - he had never talked and been 'normal' the way Dovi was. He went to ECC until the age of 3 and then went to TABAC. She talked very highly about TABAC; her son had made tremendous progress during his time there. He had moved on since then to a Board of Ed funded school. Funnily enough, when I started getting Res Hab girls a few months later - everyone who worked with Dovi seemed to know Zevi and had worked with Zevi in some capacity. They got compared to each other constantly.

 I didn't get much out of the call except to know that there was someone else out there going through the same thing - and best of all, she told me about a group of autism moms who met several times a year for lunch. I didn't feel ready to join them at the time. But now, with Dovi's 3rd birthday looming, I was ready to throw myself wholly into this new 'identity.'

I attended the support brunch a few days later. It was gorgeous; it was set up at Sylvia's sister-in-law's beautiful house. For the first time since Dovi's diagnosis, I was surrounded by other mothers who knew exactly what I was going through. It felt good.

It was also extremely disturbing.

For starters my child was the youngest of everyone else's. There was no one there with a 3 year old, 4 year old, or even 5 year old. Most of the other kids were 7, 9, 11, 15.... even 22. Some of the kids were way higher functioning - verbal, toilet trained, Asperger's rather than autism. Other kids were still stuck in there severe autism at age 10 or older. It was terrifying to hear their stories. Was this what was awaiting me as Dovi grew older? There was no one there with a true success story. No one was able to offer me promises of oh, your child will definitely get out of it. Nope - they were all battle-weary, drained and tired of it all. They chuckled at my enthusiasm and optimism. All of them had been there, done that when their kids were Dovi's age; and by the time their kid was about 8 or 9 years old they realized that he had reached his potential and there would be nothing more coming from him. The majority of the kids were in Board of Ed funded schools that didn't do much for their son but give him a good time. And many of them were talking about their desperation to find a permanent placement for their son, who was becoming very difficult to live with.

So this was what living with an autistic child was really like. It didn't seem to get easier. It only got harder. And all these mothers had been so hopeful and optimistic when their child was 2 1/2 and 3, only to have their hopes dashed as the hoped-for "cure" never came.

Some of the other mothers didn't want to share their stories with me. And some of them kind of gave me the cold shoulder. Some of the kids had started regressing as late as age 4 or 5. Many of them had seizure disorders or accompanying mental issues. Many of them were on medication. It was dizzying. This was not what I had expected at a group like this. These women were friends from before, through this group, and they tried hard to be upbeat. They talked about everything and anything -catching up, shooting the breeze, and were reluctant to sit and talk only about the overwhelming challenges of raising their special needs child. They were tired of it. But I was a drowning woman desperate to finally reach out and grab a life preserver.  I needed this. But it was not giving me what I needed.

Since I was the only one in the room with my child still in E.I., I had to leave just as the party was starting... at 12:30. I was upset to have to leave so soon, so I picked up Dovi from the basement and brought him back to the brunch, canceling his 1:30 speech session and staying until I had to take him to OT at EEC at 3:00. The other women smiled and cooed at Dovi and they could definitely see the autism in front of their face; Dovi was climbing on the chairs and tables, grabbing food, and alternatively laying quietly in a dark room playing with his eyeballs.

One of my biggest mistakes was repeating what I had unconsciously done during the support events during my infertility. I was unconsciously playing the dangerous game of my problem is bigger than yours. I wasn't interested in friendships with women who were married just a few years, women who hadnt experienced miscarriages, women with minor 'problems' who I knew would be pregnant soon. Here, too, I was only searching for someone with the same story as me: A young child, a regressor, who was not verbal yet. But more than that, I was irked when the mother had a large family besides. It was a such a struggle for me to have children, and I only had two. It was hard to relate to someone who had children easily and went on to have more after that. I was being picky. I hadn't found the "right" person to relate to and it left me feeling hungry for more.

Ironically, there was someone at the brunch who was a perfect match for me. She was a very quiet, reserved person, though, and we didn't hook up until a year later, after the second or third support brunch. Her story mirrored mine almost exactly; she had trouble conceiving as well, her son was perfectly normal until regression began at 2 1/2; he went to the main branch of TABAC for several years; and now at age 9, he was still not verbal (but TABAC had toilet trained him at age 6). She ended up becoming a fountain of support and resources for me, and an incredible connection came out of it right before the next summer - it's a story I still have to tell.

There were some other valuable contacts for me there, people I really should call more often and keep up with from time to time. One woman who was absolutely stunned to see me there is my aunt's sister-in-law. I knew that she has a ten-year-old autistic son, but she didn't know about me and couldn't believe it. She, too, had done so much to help her son - he had been at TABAC until he aged out, like Sylvia's son - until she got burnt out too. He had also moved on to a Board of Ed funded school. She had some resources for me as well and we've remained pretty good friends.

A third, surprising contact was a woman I didn't connect with well at all at any of the three brunches we met at - but her son attends the school Dovi got accepted to for next year, and she has been a tremendous source of support and resources regarding the school and the legal process and all that.


This 'group' met twice last year as well, and I resigned myself to the fact that every autistic child is unique and there are no two children or families with the same stories. I have stopped trying to find my exact match and pair and just appreciate every bit of information I can get from the other mothers. I also attended the support groups run by HASC but have had mixed experiences with them and don't really go anymore, unless there's a very compelling speaker. TABAC has run a few support breakfasts for their moms but I always end up being the only mother from this branch, and I've had mixed experiences there too - I will talk about that at some point - and have stopped going there too.

A very unlikely friend for me turned out to be someone I did not meet at the group at all... it was a former coworker of mine from over a decade ago. Both of us had battled infertility and she ended up with twin boys a year or two before Chaim was born. Later, she had a daughter around the same time Dovi was born. When we caught up on the phone to talk about our new babies, I bragged about everything Dovi was already doing - at sixteen months - and then inquired about her daughter. To my shock she told me that her darling had an infantile seizure disorder and was not doing well at all. I felt terrible about my bragging. Six months later I called her, humbled, to tell her that I had just joined her in the legion of special needs moms. The fact that she had gone through infertility and then become a special needs mom - like me - was something I latched onto, and I talk to her from time to time. Her sweet daughter attends EEC and we've meet at EEC events. Dovi's health and prognosis is a lot better than her daughter's, so I almost feel guilty talking about Dovi's progress when I talk to her.


What made me talk about support groups tonight? Because - I am very excited, a new organization has formed for autism moms in a nearby neighborhood, and our first meeting is tomorrow night at a fancy cafe. This organization is geared more towards 'fun'; giving us overburdened, drained autism moms a good time along with support. And as if this weren't enough, our local group is meeting on... MONDAY! so I have two support groups in two days after an extremely long dry spell - we haven't met in almost a year. It's a little much, I'll admit, but hey, I'll go to both and see if I come home any smarter.

Joining a support group is vital for any person going through a difficult life-altering situation. I hope no one else has such a hard time finding a support group as I did - it took a year! But by now, my support network is extensive and I'm grateful.

So here's to support groups everywhere - keep doing your wonderful work - it is extremely appreciated.

6 comments:

  1. I'm in a local support group for Jewish moms of special needs kids. There are 7 of us in the group and only 2 of us dealing with autism. The other one with a kid with autism--- her "kid" is 19 now and she's dealing with his autism VERY differently than I'm dealing with my kids'. Are we the only Jewish autism moms in the city? nope--- but the others don't happen to be in this group. Other moms in the group are dealing with downs, medical issues, and adhd. Count your brochos up there! :) I've found my people on the internet.

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  2. they are hard to find. i asked to be matched to another mother who deals with therapy and dealing with the board of ed. she couldn't find anyone. bh i do know other mothers who dealt and are dealing with similar issues. i met one through my daughter's special ed school. its great to have a support group. a heads up when dealing with agencies and going to court.

    my son doesn't have a diagnosis. he is 2 he has 3 words. he functions like a 16-18 month old.

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  3. Thanks so much for this blog... Though my son isn't Autistic he's severely ADHD and is having alot of difficulty being mainstreamed. I wonder if you would know of a support group in our neighborhood for ADHD moms. I sort of groping in the dark with all of this...

    Your posts are amazing! they're funny, interesting, inspirational, and emotional at times. You write so well, that you make it sound like it's happening now! why don't u publish a book? I think it would definitely help you with Dovi's fund?! Half kidding, half not...

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  4. Hey, pls email me about this new support group. Is it called Mothers something? Is it run by Toby T? Just curious cuz I heard about something like that.

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  5. thank u so much!!! this is such chizuk! yes it's called mothers menucha...

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