When I picked my own jaw off the floor, I was left with my head spinning. There was so much for me to do, chiefly find a new high-risk doctor to manage the pregnancy, as the one I had used during Chaim's and Dovi's no longer took my insurance. Lots of research later, I had an appointment in early January. Next came surviving until I took a blood test the next day and had the results. The numbers were good. Several days later I repeated the test, then a week later. Things seemed to be going well. I held my breath. At the six-week mark, the ultrasound showed a nice, strong heartbeat. I took leave from the infertility specialist. It would be four long weeks until my new insurance would kick in, and with my long history of miscarriage I was really nervous. But I had strong faith that it would all go well.
However, having to go off my ADHD meds AND dealing with Dovi day-to-day made things very stressful. I was having a hard time coping. I was also on a very high dose of progesterone, which made me very sleepy. To top it all off, Dovi wasn't doing very well on the Ritalin. As I had suspected and predicted, it was making his sensory processing disorder worse. He became a bit more aggressive, biting staff and throwing things. Meantime I went with Dovi and one of his ABA therapists, Alice, to see an incredible school for Dovi (please do not donate to the Dovi education fund - it no longer exists!). Alice kept remarking snarkily on how much worse he was doing on the Ritalin; it was driving me crazy. Alice apparently is a health nut and all that; but I was flummoxed how she expected me to be able to manage his behavior without any medication. I was blown away by how amazing the school was, and began to frantically scrabble around to find a way to raise money to pay for it. It was a stressful time.
On Friday morning about a week before Chanukah I woke up with a terrible toothache and rushed to my dentist. The dentist made things worse, and I was in terrible pain all day. With being pregnant and exhausted and Dovi having not been away for over month, I really needed a break that Shabbos. I tried to get him into the Respite House, and they had a last-minute opening. However, when the nurse heard that he had started biting again, she tried to dissuade me, saying that if he actually would bite someone at the House, he could be blacklisted until his behavior improved. (Isn't that sad? We're talking about a little 4 year old here. Not an aggressive teenager.) But more on that in a future post.) Friday night I went to take a nap while 2 volunteers/com hab girls watched Dovi. I woke up from a deep, drugged sleep to horrible screaming. Apparently while I was napping, the girls didnt' properly supervise him and he ended up tipping over the percolator and getting burns on his feet!
I won't even go into much detail about what followed the next two months, because it still gives me PTSD to this day and I try to block it out. After bandaging his burn and monitoring it all Shabbos, I did end up in the burn unit with him on Sunday, where they miraculously discharged him with a Mepilex bandaging once they realized that he was too hyperactive to be kept hospitalized. But ended up embroiled in every mother's worst nightmare: Visits from child protective services. (We were actuallyn not reported by the hospital, but by someone else, but that's a whole other story I wont' even address.) Thankfully, we were eventually cleared, but not after weeks of terrible heartache and stress. The experience left me second-guessing my parenting for a long time, and sent me into massive tailspins of anxiety. Thankfully my therapist was able to guide me through a lot of it, but it was far from fun.
The worst repercussion that came out of the entire incident happened on Motzei Shabbos Chanukah. That Chanukah was the first time I started leaving Dovi behind during the family Chanukah parties, after rcalling the disasters of years earlier. I was very emotional and sad all Chanukah. I didn't trust any of the com hab girls or volunteers and took care of Dovi myself, which was physically taxing. The last straw was on the first night of Chanukah, when I suddenly started bleeding. Convinced that I was losing the pregnancy due to the stress of the burn and CPS incident, I didn't feel like going to my in-laws for their party, but forced myself to. The next morning I raced back to the infertility clinic for an ultrasound, but all was okay!! It ended up being a blessing in disguise, since I couldn't see my new obstetrical team until week 10.
My mother and I took Dovi twice more to the outpatient burn clinic. Dovi's toilet training program, which we had barely started at TABAC, was suspended for the moment, since we didn't want to bother him unneccessarily while he was recovering from the burns. Indeed, toilet training was never subsequently reattempted until he moved to the residential school the past February. (He is , thank God, doing pretty well with their toilet trianing program.)
After the dust had settled from the burn incident, my Medicaid Service Coordinators, "Marilyn" and "Jenna", realized that I needed a lot more help than I was getting. They tried to obtain OPWDD funding to gate off my kitchen to make it safer, but of course, the OPWDD kept turning it down. It took another 1 1/2 years, but we eventually did it ourselves, and we finally had peace of mind for about 2 years, until Dovi was so strong he'd burst through the kitchen gate with all of his might and it was rendered useless.
They also started urging me to find another respite provider aside for the Respite House; once a month was not enough for us anymore, and there were times when they didn't take Dovi for 2 months or so. I had heard of an incredible lady, Mrs. G., who ran a 'respite home' in her house singlehandedly. Sylvia was sending her son Zevi there once a month for about two years by then. I was wary though, and after long phone calls and warning Mrs. G. about what she was letting herself into, she tried it out one Shabbos - and it worked! We started sending Dovi to Mrs. G. one Shabbos a month, so we ended up having respite every other Shabbos or so. It gave me a chance to catch my breath and rest up, and it also meant that I had a break on Sunday mornings from getting him ready and waiting for the Sunday Program van with him. I cried almost every Friday afternoon when my husband took him to Mrs. G. or the Respite House, and despite the much-needed break the family got when he was away, I cried almost every single Shabbos. It would take me a very long time to be okay with all these respite weekends, even though they were desperately necessary.
I will end this post now since I am actually on summer vacation and would like to step outside for a bit. I know this is a very very boring post, especially since it covers events that were hashed out over four years ago. But I'm building up to a point. And since this is a chronological diary, it was necessary to write this entry so I can build up to the post where I discuss the further movement into the decision that it was time to look for placement for Dovi.
Not boring! I'm happy you are back on here and hope you will post frequently!ReplyDelete