When you have a special needs child, one of the biggest challenges is learning to juggle your schedule and accepting that one parent must give up at least part of his or her career in order to accommodate that schedule. Since I work from home and have a relatively flexible job, it has fallen on me.
We’ve worked our way through denial and have accepted the reality of Little Bear’s diagnosis. We saw two weeks of fast and impressive progress, but the bad days remind us of the reality we’re facing. Yes, he is becoming more and more expressive with each passing day. Yes, he looks at us very intently when we play with him now. Yes, he now predicts what’s coming in almost every letter of Dr. Seuss’s ABC. But that doesn’t negate a diagnosis.
We had the ASD branch of the local Early Intervention group come out on Monday to do an evaluation and see if he qualifies for more services. We were sure they would be like, “Oh, he’s doing great! You have nothing to worry about! It’s just ADD. You’ll see.”
That was not the case. Not at all.
Little Bear was not in top form when the ASD people came. I had told Papi Bear to wake him up at 7, feed him, and have him ready to start the day. Papi Bear woke him up at 8AM and the appointment was at 8:30. He was still morning cranky when they arrived and wanted no part of anybody because he hadn’t eaten yet.
Throughout the observation, they told us all of the signs they saw. And as a mother, I naturally tried to explain them away. My heart knew they were right, but that’s just me as a mother trying to be a mother.
By the end of the session, he had been approved for an extra two hours of therapy a week, bringing us to a grand total of 3 and a half hours weekly. We still want more, though. His neurologist gave him a prescription for OT, PT, and ST. We’re in the process of talking with a private agency that handles the therapy for a friend who has a daughter who was a micropreemie triplet and has been very happy with all of her daughter’s therapists. They will definitely be able to provide OT, but they need to check to see how Early Intervention is charging his ST (he’s approved for Feeding Therapy) and what his maxes are for PT.
Papi Bear feels that this isn’t enough. I personally don’t know what enough is, but I would be happy with 1 hour a day every day, if we can get it. Even though it’s just playing, therapy is rough on him and after 30 minutes, he’s usually tapped out., The kid is two. Recently 2. Two to three hours of therapy a day is hard on a full grown adult!
Our other movement towards a better outcome for our son is changing his daycare. His now-former school used to be great. We enrolled his brother there shortly after Little Bear was born. It was a small, homey non-profit that really focused on being accessible to all types of families. We loved it!
I have no idea what happened over the past year, but it has taken a nosedive. There were a few small incidents. We were never huge fans of the two year old teacher, but we loved the one year old teacher and the three year old teacher. We figured she’d eventually get fired because she was awful in comparison. Honestly, I wouldn’t be altogether shocked if she contributed to the downfall of the school.
Last summer, the school was full. There were tons of kids there for camp and it was like walking into a circus in the morning. SO MANY CHILDREN. This year? I’d be surprised if there were a dozen kids in the entire school. The three year old teacher left and she hasn’t been replaced in 3 weeks.
Big Bear now goes to public school during the school year, but we put him in daycare over the summer since he didn’t qualify for summer school. By the end of the summer he was holding his poop in for 3 days at a time after he had been REALLY close to being potty trained when he finished public school in May. Last week I dropped him off at school and he told me, “Mama, no quiero cole. Quiero otro cole.” I felt awful having to leave him there, but we had no choice, since school doesn’t start here until the 22nd.
After a month of listening to my children saying they don’t like it there and Little Bear screaming when we left him, we decided something needed to be done. We went to a much more expensive school near Papi Bear’s job and decided to put Little Bear there. They said the next opening would be October 10. We paid the downpayment to hold our spot. He can only go 3 days a week now, but I’ll just reinforce his therapy those other two days while he’s with me.
After we told the old school that Little Bear was going to change in October, they said we still have to pay the $100 registration fee for the year or he can’t come back on the 22nd. We said, “Look. We know your enrollment has tanked. We’re not paying $100. You can either accept our money for the next six weeks, or we’ll just pull him and keep him home with us.” They said they could bring it down to $75. My husband was still not happy with that, so he went to the new school and told them our problem. They said they would be able to take him on August 29th. So we have one week where things will be difficult, but we’ll get through it. It’s better than dealing with them for another week.
And now I’m rambling because it’s 1AM.