Oh, where do I start?
I could call this the ‘post diagnosis’ story or ‘so so many reports’ story.
We did get our Autism Spectrum Disorder (“ASD”) diagnosis on July 10. No body wants to be in the club, but once you are in it, there are a lot of resources. For that reason I am happy to be in the club. This also means that Benjamin now will have insurance benefits via his health insurance and or opt to apply for medicaid, if and when the insurance no longer provides coverage. I need to research the medicaid process and there is also something about Social Security that I need to read up on. Benjamin’s own policy apparently, and much to my surprise, has a rich coverage for ASD (until the politician’s change that).
While getting the diagnosis wasn’t a surprise to us, it is still a swift kick in the gut. It is not what anyone wants. No parent wants their child to be labeled with an illness or condition, whatever it maybe. It puts you in a category and each diagnosis has a label. The flip side of this is that Benjamin can now get the help he needs, so for that reason, it doesn’t matter what the diagnosis is — he now has insurance benefits and we can access community resources, that we were unable to use previously.

We also had our evaluation by the Department of Education’s Child Find team to help assess what assistance they can provide for Benjamin with the goal of an inclusion for a mainstream kindergarten start. It’s a transition from the Department of Health’s Early Steps team that have been working with Benjamin since last September.
The evaluation team consisted of a psychiatrist and a speech pathologist. During a 2 hour period they asked Benjamin to perform various tasks, identify pictures and stack blocks this way and that way. They also asked us a ton of questions, and forms were filled out. I think we all felt thoroughly analyzed and our brains all felt mushy by the time we were done.
We returned 3 days later to meet with the same evaluation team without Benjamin so that we could discuss the results. I came prepared; no mascara. For 2 hours the team laid out a detailed report, highlighting the mean testing scores of data in comparison to Benjamin and notating where he was either behind, severely delayed or doing well. We walked out with 55 pages of analysis about our son, who is happy, smiling, with good eye contact and who is also quite smart. The analysis in our hand states differently; he acts severely autistic in some areas, severely delayed in others such as speech and social skills. The more areas the team feels Benjamin needs assistance with, the more services he will be eligible for. At this time we also received Benjamin’s IEP — individual education plan. The county recommends a school for children on the Autism Spectrum for full program, i.e. 9 a.m. –2 p.m. The ratio is 1 teacher per 10 students. We would get 150 minutes of speech per week. Possibly also occupational therapy, if needed. Then we need after care but they are happy to buss him in the county. The school that they recommend to us based upon our zip code does not provide aftercare at the same location.

I wonder on a side note, if parents of special needs children are expected to have a midlife crisis simultaneously with receiving the diagnosis and quit their jobs? Both Benjamin’s dad and I have full time jobs. We have to or it wouldn’t work between rent, car payments, insurance, daycare/aftercare and extra curricular activities. There are very few vacations and we are getting by with not a whole lot left over. There is no “oh, we have an ASD child. I’m going to quit my job” budget allowance.

Unfortunately, our current daycare is not going to accept after school care only children in the fall, so as an added wrinkle we need to fill that space with someone kind care. Someone like Mrs. Doubtfire with an ABA certification and a clean driving record, would be great. If this imaginary caregiver could walk our dogs too, this would be great. Our recently adopted foster dog could probably join in the ABA therapy too, so we are currently accepting applications.

Since the diagnosis, we have also looked at two private schools.
School number 1 was the cream of the crop. I would like to go too. Absolutely gorgeous. Fences throughout, salt water pool, green house, indoors basketball court, outside play area and nature trails. I swear I heard the sound of angels playing harps while walking through the halls. Tuition is a staggering $1,700 per month and care is only offered between 8:45 a.m. and 2:30 p.m. ABA therapy, speech and occupational therapy is rolled in to the tuition. Oh, no aftercare. You have got to be kidding me, right? Here is the midlife crisis again or Mrs. Doubtfire driving her own car (clean driving record, with ample insurance coverage, please) to pick up Benjamin each day. There is a grant that would help off set the tuition cost, so while the tuition is high, it wouldn’t be alarmingly so after the grant.
School number 2, offers a very similar program to school number 1, but it is not absolutely gorgeous. I don’t for a minute doubt that the program isn’t as effective as the program at school number 1. It’s just not as pretty. No pool. No greenhouse. No basketball court or gym. I’m working on getting past that part. School number 2 offers ABA therapy and lots of it. A full day program as well with aftercare until 5 p.m. Well now, this is a big deal. The other nice factor is that they bill insurance, so we would only need to pay a very small residual co-pay each day.
So we are scheduled to have Benjamin assessed this week with school number 2. Fingers crossed that he will fit their program. It would work with our work schedules without anyone having to have that budgetary tantrum and quit their job because we have an ASD child.

This past week; or maybe this month, between learning that Benjamin is on the spectrum, that we are loosing the daycare that we love so, and the evaluation with the grueling results has been quite the load. We are very glad that these difficult days are done. There will be more days and weeks like these I am sure, but none are scheduled right now. We are very fortunate to have a very happy, affectionate and caring child. Yes, he is non-verbal but we are working on that and we believe this will change.
Team B is now working on getting all the cards in the right places to give Benjamin everything that he needs.
Staying strong. Go Team B.
