Of the five stages of grief, I spent the least amount of time in denial. By nature, I'm very much a realist, which is a good thing; when faced with a challenge, I scream and kick and insist that it isn't happening. But then I dust myself off and spring into action. I'm also an overthinker, overanalyzer, and researcher; all good traits unto themselves, but unfortunately I also tend to obsess and engage in fatalistic thinking. In plain English, I jump to the worst case scenario immediately. Positivity is not my strong suit and I'm a pessimist by nature. It's a defense mechanism my mind employs so that I don't have false hopes and make false promises. It's an inborn trait, embellished by my upbringing and made worse by my long journey through infertility. Because I couldn't bear disappointment, I consistently conditioned myself to expect the worst so I wouldn't be let down. This continued when I became a mother and when this whole business started. It has taken several years of hard work to stop jumping to negative conclusions all the time; but 2 1/2 years ago it was my instant go-to place.
When Dovi was given the dreaded diagnosis of PDD-NOS, I immediately took a short sojourn in Egypt, in The Nile to be precise. He was so tired during the evaluations; he wasn't at his best. I've just been neglecting him; I should spend more time with him. I just need to learn how to play with him properly. It's just a passing phase; he'll get better really soon with the right therapy. Evaluators make really harsh diagnoses so the child can get the services he needs. It's really nothing more than a label. Look how quickly Chaim outgrew his symptoms. Dovi will just have a few months of therapy and he'll be mainstreamed by the time he's 3 and belongs in preschool.
I was jolted back to reality as soon as Dovi started therapy for real. It was clear to me that had a very tough uphill battle to 'catch up' with his peers. And as the months went by and there was virtually no progress, The Nile began to recede in the distance, growing smaller and small by the day. As time passed and more and more unreachable milestones evaded us, the river parted for me and I slowly descended into the depths of the Stormy Sea. This was going to be a long-term situation. This as life-long, and life-changing. As his third birthday loomed large and he was not toilet-trained, not saying a single word, and not heading to preschool like his little neighbors, I transitioned quietly from Team This-Is-Gonna-Go-Away-Soon to Team Helloooooo-My-Kid-Is-Autistic.
When I was still knee deep in The Nile, it made sense to keep it a secret. After all, if he was going to outgrow this by his third birthday, there was no sense in having the entire world know that he was labeled with ASD. People would remember this, after all, when he would be old enough to get married. So I didn't tell people. I was going through a terrible time; I was in the throes of Anger (Stage 2) and Depression (Stage 3), and tried to put on a brave front.
But as his therapy schedule started overtaking my life, it was harder and harder not to talk about it. So I adopted a non-untruth as a cover story: He was Speech Delayed. That sounded a lot more benign, a lot more common. Speech Delayed. Speech Delayed. That's not a fraction as bad as Autistic. Right?
It's funny, how in the mere 2 years of my immersion into the world of Special Needs, the world at large - and my community in particular - has become really educated about the autism spectrum. Two yeas ago, autism to the general layperson immediately brought up images of profoundly impaired individuals rocking back and forth, screaming, and acting strange. Thanks in part to many published articles, as well as a sudden surge in diagnoses of ASD, people are more aware of the huge range of abilities and deficits that encompass the autism Spectrum. It is no longer a taboo subject, and everyone seems to be well versed in the many nuances of this topic. But for some reason, just two years ago, autism was an extremely misunderstood topic, and I simply couldn't tell anyone that my child had autism. So I preferred the term Speech Delayed; if I was more trusting or friendly with the person I was discussing it with, I went a little further and called it PDD.
Telling my family was a mixed bag of relief and stress. Some of my family members responded with offers of unconditional support and a shoulder to cry on. Others immediately jumped on the bandwagon of Endless Advice, and alternatively on the You're To Blame wagon. Yet other family members took the news terribly hard; the tables were turned and I had to comfort them instead. A couple are still in a bit of denial and insist that Dovi will be perfectly fine and will outgrow this, citing names of adults in the community who didn't talk until they were four or five years old and were wild and impulsive as young kids. I smile, nod, and say "Amen, from your mouth to G-d's ears."
Crossing the River of The Nile and jumping into the Stormy Sea was a difficult transition. It's uncomfortable, wet, cold and dizzying. On some days the water is placid and clear blue. At other times the waves crash and churn and are completely overwhelming. But from what I've experienced, as I reached out to other brave swimmers in this Stormy Sea, kids of Autism Moms who chose to remain in their more comfortable environs in The Nile don't make it very far. The Moms who make the leap into the Stormy Sea and become their child's advocate, leave no stone unturned, tap into every resource available and utilize the research out there to help their child further along, come out better in the long run - and so do their precious, beautiful Special Children.
The sea was very stormy the past few days, but it's calmed down today, Boruch HaShem. I'm going to hang out beachside for a little, if you don't mind.
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