Saturday, January 19, 2013

Mazel Tov! It's a 3 yr old! Thoughts on Birthdays and Missed Milestones


When I initially started writing this blog, I wanted it to be religion-neutral and appeal to a broad spectrum of readers, especially other autism moms. I’ve seen other friends do it and manage to keep their lives anonymous and attract thousands of readers. But as it turned out it was nearly impossible, as this is a very ‘personal’ kind of blog and my lifestyle creeps into every post more or less. You’ll notice I’m keeping the names of the people involved in my life extremely culture-neutral but not “out there”. However, I still think that no matter your affiliation or denomination, if you’re dealing with special needs you can relate to this blog, cultural background notwithstanding.

I prefaced this post with the preceding paragraph because I’m about to talk about something that’s relatable across the board even though I’m discussing one specific milestone: that of a Jewish boy turning 3. If you’re not Jewish yourself, or you don’t do the ‘first haircut and trip to cheder (Jewish preschool)’ custom, you can still relate to this post, because reaching birthdays while missing milestones is a big bittersweet, lump-in-your-throat tears-in-your-eyes hurdle for any special needs parent.

(I will just provide a small glossary for unfamiliar terms. Upsherin = the haircutting ceremony. Kappel = the headcovering. Payos = the sidecurls. Hopefully this is enough context to understand the entire post.)




When Dovi was first diagnosed with PDD-NOS, I was absolutely convinced that it was a temporary setback, and with excellent therapy, he would soon catch up. Chaim had done very well with therapy and I couldnt see why Dovi wouldnt do the same. I was absolutely sure that he would be in cheder by his third birthday.

When the first summer passed with almost no progress, I readjusted my sights to the fact that Dovi would not be in cheder for his third birthday. But I was sure that he would be able to be partially mainstreamed by 3 ½. As time wore on and progress was still extremely minimal, I further set my sights for him to be partially mainstreamed at age 4. But as his third birthday began to rapidly approach, my heart sank lower and lower. Thoughts of mainstreaming disappeared with the wind and I began researching schools for Dovi for when he would age out of preschool.

It also meant a big mental shift in the way I viewed myself and Dovi. This was no longer a temporary situation. I was officially the mother of a special needs child, and my son would not be like a ‘regular’ kid. As long as he wasn’t yet preschool age, it didnt matter so much that he was getting an intense therapy regimen. People saw me on the street pushing him in a stroller - he was still a baby, with long hair. But once he would be with a kappel and payos, the questions would start. What cheder does he go to? And I would start to stammer. Or I wouldn’t - I would say that he is speech delayed, and therefore attending the ABA center. I had to work on myself to internalize that this was okay.

But once again, I was feeling a profound sense of loss. The milestone of a boy’s upsherin is a huge one. I had no idea how on earth Dovi would handle the buzz of the clippers, how he would keep a kappel on his head, and how we would handle the going-to-cheder issue. There was grief too; I had just two children, and was being denied the simple nachas of the upsherin. Dovi would have no idea what was going on; it almost made no sense to even have an upsherin. My head was spinning. It was awful.

I sat through several sessions with my therapist and worked through the issues. And funnily enough, just like that, the negative feelings disappeared. As the day loomed closer, the intensity of my emotions diminished. Reality was here; Dovi had no idea what an upsherin was, and we would go through with the ceremonies anyway. I consoled myself by telling myself that in New Square, upsherins are done at age 2, when the boys are still in diapers and many are not verbal and they also have no idea what’s going on!

So we had to adjust a little bit to meet Dovi’s different needs. Before long, things fell very nicely into place. I called up Chaim's Rebbe and explained the situation - that I had a special needs child who was unaware of his world, about to get payos, and there was no point in taking him to a regular preschool cheder to recite the alef bais, as he obviously wouldnt do that. Could we come to his classroom instead and simply have him lick the honey off the alef bais sheet? Chaim’s Rebbe - who was a young, first-year Rebbe - was very gracious and accommodating.

Next, I had to get over another hurdle - the requisite but optional and totally non obligatory pre-upsherin long-haired portraits. This is not a religious custom at all - it’s just something parents do with their pre-upsherin child as a keepsake. Taking Dovi for portraits was totally unrealistic and impossible. He could not sit still in a studio or pose on command. The previous summer we had done outdoor portraits; that was the only way we could take pictures of him. Where could I find a photographer willing to do outdoor portraits of Dovi?

Enter my sister, an amateur photographer who does beautiful work. Scheduling, however, was very complicated. She could only work on Friday, when her husband was home to babysit. My husband worked every second Friday. One Friday Dovi got up at 5 am and was in no shape to take pictures. The next Friday it rained. We were now a month away from his third birthday and still no pictures. I tried snagging another photographer who did outdoor shots and even had a special needs nephew she had handled very well. But she shipped off her props to the Catskills - it was 2 weeks before “Summer Exodus” - and couldn’t accommodate me anymore.

Finally, finally everything fell into place and we were able to grab a Friday afternoon and race off to Prospect Park. The results were absolutely amazing. My sister shot 200 pictures, of which 50 came out great. Here are just two of the best ones (keneinahora pooi pooi pooi!)











The rest of the preparations went smoothly, just like any other child’s upsherin. We were moving a week later; it was a crazy time. I got the goody bags together; I made about 150 of them but didn’t even distribute 70... the city had emptied out and I didn’t have that many people to give them to.

I spent months worrying how I would handle the whole kappel-on-the-head thing. I knew that Dovi would never keep a kappel on his head. My good friend Sylvia had chosen not to give her Zevi a haircut. He had a simple pageboy hairstyle, no kappel and no payos. She didn’t like the look of the shaved head with no kappel on, which is unfortunately how many special needs kids end up looking. I refused to do that. (I said - no, I will challenge HaShem, “I am doing what a mother is supposed to do for her child when he turns three. I am cutting his hair and putting a kappel on his head. Now please keep Your end of the deal; please make him how a 3 year old should be!” ) I figured we would cut Dovi’s hair with a really ‘big’ number clippers - say, number 5 - and clip his kappel on his head with hairclips. But as the day came closer I realized it would be even worse for him to have hairclips in his hair. Then a few weeks before the big day, I was ECC for his OT session and saw something fascinating: a little Down’s Syindrome boy wearing his kappel on a hat clip attached to the back of his shirt. Now that was an idea!!! I went out and purchased a few hat clips, and that has been the way Dovi has worn his kappel ever since. It’s clipped to the back of his shirt, and when he rips it off his head or it falls off, we can find it easily and put it back on his head. And you know something? I have so gotten used to his ‘look’ of bald-head-sans-kappel that it doesn’t even bother me. Having him look like the traditional little boy with the kappel and payos at least makes him look ‘normal’ and gives him the traditional Yiddishe chein (charim).

A few days before the big event, my husband went to see a Rebbe. Not a big Rebbe and not our community Rebbe, but someone smaller that he had a connection with. The Rebbe gave us very warm words and a blessing. He said: “Labels are just labels... just because they call him autistic doesn’t mean he can’t accomplish things... It says in the Talmud that a child begins speaking in his fourth year... May this year be the year that he begins talking....” Well, he didn’t really, but it was still touching and heartwarming to receive a bracha like that.

The night before his upsherin as I gave him a bath I decided to throw all caution to the wind and talk to Dovi’s inner soul. I started telling him that on Sunday Bubby and Zaidy are coming and we will cut your hair and you'll get payos and a kappal and be a big 3 yr old yingeleh... and he began to GIGGLE like never before. It was hilarious. he laughed his head off! It was a surreal experience.

On the morning of the upsherin I was surprised to be more excited and anxious than sad.  I had envisioned writing an emotional letter “to my child on this big milestone day expressing my emotions and sadness about all the things he can’t do on this day”. Didn’t happen; I didn’t feel that overwhelming sadness I had expected to feel. I was just focused on getting through the day with as few mishaps as possible. We set the table nicely, and at first Dovi behaved okay when his hair was cut with the scissors, but when the clippers came out, he went ballistic. He cried and screamed - which was okay, because many, many neurotypical 3 year olds cry when their heads get shaved. It’s scary, it’s a sensory experience they don’t love. Dovi was also overwhelmed by the presence of my nieces and nephews who came by to watch and get their goody bags. But once he was done and bathed, I let him run around, and he even did a few swings on his swing, which calmed him down.

Now it was on the cheder-bringing.

There was, of course, some sadness. We were not going to Dovi’s class. He had no class. He wasn’t attending the cheder he rightfully belonged in. But reality was reality and we went to Chaim’s class. Chaim turned out to be the star of the show, and his Rebbe was incredible. He took Dovi onto his lap and told Chaim that he would stand in for his brother to say all the alef bais and other things that are said. It was an incredible moment; for when Chaim had turned 3, with his own issues and delays, he had refused to cooperate and hadn’t said a single word of alef bais. Now he was ‘making up for it’, putting on a stellar performance and making me extremely proud. Dovi was shockingly quiet and well behaved, and although the boys in Chaim’s class understandably laughed at Dovi as he raced up and down the floor of the classroom and hallway, it didn’t faze me.

And just like that, it was over. Chaim stayed in school, and my husband took Dovi to our new, still-empty apartment, where he excitedly explored all the rooms and raced around, and kept taking his kappel off and feeling his bald head, wondering where his hair went.

That was all there was to it. We passed the big milestone. Dovi was now three. He wasn’t going to cheder. And it was okay. Forgive me for mixing the holy and the profane into one post, but to quote Bruno Mars, “You’re amazing just the way you are.”



7 comments:

  1. I have tears in my eyes as I read this. Sounds like an incredible simcha. Dovi looks stunning!

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  2. Gorgeous story, gorgeous boy. May you have much nachas from him, and may he give much nachas to his creator!

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  3. What are hat clips? Are they a chassidishe item? (Asking because I'm not Chassidish and I have never heard of them.) Where would I buy such a thing? My son's hair is not shaved and technically clips do work, but he rips them off after a few seconds. We have lost dozens of yalmukas in the 6 months since he turned 3, because he is always taking them off his head.

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    1. Funny - I should have put in a link in the article - I'm happy to have found it on amazon, it's good to know, cuz we run out of them in the summer when the local stores dont stock them!

      http://www.amazon.com/gp/product/B004AX12GE/ref=as_li_ss_tl?ie=UTF8&camp=1789&creative=390957&creativeASIN=B004AX12GE&linkCode=as2&tag=autisparen-20

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    2. Let me try again.

      http://www.amazon.com/Little-Kittens-Clips-Heads-Navy/dp/B004AX12GE/

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  4. I'm so sad that most of your pictures aren't showing up!

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  5. Hmmm I dont know why its not showing up. truthfully this site is kind of on its last legs, I'm going to revamp it at some point, but my baby is too young at this time for me to pay it much attention. I'm sorry :(

    ReplyDelete

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