The Song that Changed Everything

The second stage of the grieving process is the Anger stage. Once Denial/Disbelief dissipated and reality sank in, I was filled with a combination of Anger, Depression, and Guilt. I find that the Five Stages of Grief don't always go in 'order'; Sure, first is the denial and disbelief. But you don't necessarily have anger next, then depression, then bargaining. I had a mixture of all three at once. But in my case there was no bargaining. I had done enough of that the first 9 years of my marriage. And I wasn't filled with vitriolic anger; as Jews we know that everything is ordained straight from HaShem. Yet, it's hard to swallow and it hurts. Badly.

My version of Anger was a simple, anguished sentence: WHY ME???? 

Those of you know me and my background story know what I went through those first 9 years. Those of you who don't, well, I'll clue you in. I didn't have children for 9 long years. I struggled with infertility, and it wasn't pretty. I had my share of ups and downs, grieving and loss and anger and all that. Then, finally, when Chaim was born, I still didn't feel whole. He was a preemie and I had to struggle through the whole preemie and therapy business. He was born by emergency c-section and never learned how to nurse. When he was 2 years old, we embarked on the infertility roller coaster once again, expecting it to take many years, and were shocked when our first round of treatment we got a positive result. Dovi  was born the summer right before Chaim turned 3, and I viewed this as my chance to really experience motherhood the way it should be. He was full term, nursed like a champ, and I had a normal, non c-section delivery. Life was finally "normal" and good!

Another appeal for the Dovi Education Fund

I just spoke to the school where I went with Dovi for an interview. They are very excited about him and would love to have him.

The catch? I need to come up with the entire tuition in advance. ahhhhhhh!

People, we are talking about almost six figures here. By July.

I will be able to raise some of it via other channels, but it's all just drops in the bucket.

So I am making another appeal to anyone out there who can spend even five dollars to the cause, for helping Dovi reach his potential - and his potential is huge.

Naturally I cannot name the school here, but trust me, once he is in, I will let you know the name and post videos of the school. It's the most incredible school for autism in the entire city.

So please, anyone who hasn't donated yet and can spare ANY amount of money to help Dovi, click below. THANK YOU SO MUCH.

Winter Doldrums

Some of you reading this blog are probably getting dizzy reading how insanely busy I am on a daily basis just with Dovi's needs. Life is always crazy around here. If it isn't one thing, it's another. But looking back on my old journal posts from 2 years ago I'm amazed at how I survived that first year after Dovi's diagnosis. Frankly, next year I'll probably shake my head and wonder how I survived this year. I guess Hashem gives you strength to survive whatever is happening at the moment; later on you feel weak-kneed and wonder just how you coped.

The winter of 2011 was chock full of ups and downs. It started with the infamous blizzard of 2010. New York was paralyzed for a good week. Like everyone else, I had my kids home all week. Unlike everyone else, having Dovi home for a week is a frightening prospect. I was lucky that kind, devoted Ellen actually came by TRAIN to work with Dovi, despite the blizzard. Her dedication to Dovi's cause was just unbelievable.

Ellen had one major downside, though - she was overly involved. I spoke to her three times a week, every time she had Dovi, so every time Dovi had a hard day, I ended up worried and anxious. When Dovi wasn't making progress, I was beside myself with grief. Ellen felt that she was working very much on her own; Naomi was out on maternity leave and she was working with absolutely no supervision. Unlike Bessie, who finally came back from her three-week honeymoon vacation, Ellen took her job very seriously. Bessie came twice a week for her two hours and left her work at work. Ellen lived and breathed Dovi and cared for him as much as I did. But unlike her, I had myriad other obligation and worries and I couldn't focus solely on the ABA portion of Dovi's multiply complicated schedule.

Therapy and Support for the Caregiver

Even prior to Dovi getting diagnosed with autism, I was struggling with a host of issues. I had a pretty bad Internet addiction, and was plagued by feelings of low self esteem and inadequacy. In a community where your value is measured by how good a homemaker you are, I was at the bottom of the totem pole.  During my struggle with infertility, all I ever wanted to be was a stay-at-home-mom, and I was shocked to find myself having little patience to my children and even less patience to housework. I felt overwhelmed by my workload and tasks, and the smallest thing felt huge and difficult for me. I also suffered from anxiety and and an obsessive tendency. In short, I was a basket case.

So when you add something like an autistic child to the mix, my life was a tinderbox just waiting to explode. It didn't take more than a few weeks for me to realize that I needed help. Serious help. I was not coping with the added stressors of ferrying Dovi back and forth to his multiple therapy sessions and the mountains of paperwork, networking and resources to follow up on. The harder life become, the more I gravitated to my computer for distraction and solace.

But finding the right source for 'help' was not easy. I knew of just one clinic of social workers who took my HMO, and they had endlessly long waiting lists. Then Dovi and I were practically incarcerated in our home, so I couldn't even entertain the thought of seeing a therapist every week if I couldn't leave the house.

From EI to CPSE

By mid-January we had finally settled into a comfortable routine. Get Chaim on his bus, get Dovi's food together, walk him to the basement (on Bessie's days; take him down the stairs to Ellen on her days), do my errands/housework, get Dovi dropped back off at noon, wait for the speech therapist, take him to OT or wait for the volunteer to take him to OT, come back and do the rest of my housework, wait for Chaim's bus, ad infinitum. It was all shattered when Becca called to inform me that she was starting the CPSE process.

What? So soon? He was barely 2 and a half!

Becca reminded me that we were trying to get Dovi into the TABAC center before his 3rd birthday - at 2 and 9 months - and therefore we had to start the evaluation process already, so that we could have our meeting with the Board of Ed in March and get Dovi into TABAC for April.

And so, we began the evaluation process again. Once again, evaluators traipsed in and out of my house, five of them in all, reminding me once again of all the things Dovi didn't do and couldn't do, and all the things he shouldn't be doing anymore but was still doing. It painted a dismal picture of the progress he was not making. It was gut-wrenching all over again.