We live in Los Angeles.
We are educated, both with graduate degrees.
We are working class, both born that way.
We qualify for assistance from the California Regional Centers. (What's this?)
We are a culturally mixed family.
I am Latino.
Jill isn't.
Nicholas is seven.
Elena is five.
Both our children are considered to be somewhere in the moderate range on the spectrum, with a number of severe behavioral issues.
Elena displays more traditionally classic autism symptoms while Nicholas displays symptoms that are more like that of Asperger's Syndrome, even though he is clinically diagnosed as "autistic." Essentially, it means she is nonverbal and keeps to herself while he can, more often than her, talk about the same things, over and over and over again.
We feel they are very intelligent and bright.
And really funny.
Nicholas was diagnosed soon after his fourth birthday, but we began the process of getting him diagnosed right after he turned three. It took a long time. It felt like a lifetime.
Elena was diagnosed at two. Her process went faster. We knew what to do.
Ironically, he was diagnosed first by our school district, and later by the Regional Center. She was the opposite. Getting an autism diagnosis from your school district doesn't mean the Regional Centers automatically accept their diagnosis. You have to get a separate diagnosis from their team of psychologists to qualify for Regional Center services. And vice versa.
Nicholas was in a special day collaborative class (What's this?) where he was one of five children with a high-functioning disability. For the past two years he has been enrolled in a kinder thru second grade program for children who are high-functioning autistic. He is mainstreamed half the day. (What's this?) He will attend the same program next year, as a second grader. He takes the bus to and from school everyday. It is part of his IEP. (What's this?)
Elena has been in a special day mixed class for over two years now. She attends for two hours and twenty minutes a day, Monday thru Thursday. She was in a pre-special day program at Therapy West, four days a week for six months, two hours and twenty minutes a day, funded by the Regional Center. She began it soon after her diagnosis. She was receiving occupational therapy (What's this?"), speech therapy and physical therapy at the same time, at the same place, all funded by the Regional Center. She began attending our school district two days after her third birthday. She will be attending a kinder collaborative class in the fall. She will be one of seven high-functioning autistic children in a class of typical children. She is also bused to and from school.
We think their special-ed teachers are truly amazing educators and beautiful souls. We are lucky to have them.
Both receive the full litany of services from our school district, from Speech Therapy, Occupational Therapy, and Adaptive P.E. All in the classroom environment. Elena receives and extra hour of OT clinic every week.
They attend different schools. Next year as well.
Both have been receiving in-home intensive ABA Therapy for over a year now and will continue to receive it for as long as medically necessary. (What's this?) ABA Therapy and other in-home therapies are now mandated to be covered by health insurance. Prior to the Affordable Health Care Act it was covered by State and Federal funding through the Regional Centers. There is a copay for each session. The Regional Center covers the cost of the copay. If not, with our insurance, it would cost $80.00 a week.
We qualify for social skills programs (What's this?) through the Regional Center but do not use them at this time. We need some Velazquez family time on our weekends, or just time...period.
We qualify for weekend in-home respite care hours (What's this?) and weekday supplemental caregiver support hours as well. It took some time to settle with the right agency, and with the right type of caregivers. Just because they show up doesn't mean they're a good fit for our kids. We use the supplemental support hours more than the respite care. We have our preferred caregivers spend time with Elena in the morning a few times a month before she goes to school. Gives me a chance to do...whatever. Even work a part-time job, someday, I hope. Not like we can have it everyday, with therapy happening. So, you know, we have it. Doesn't mean it's convenient to use.
ASD comes with many surprises. One of them is a huge mountain of paperwork. Another, meetings, lots and lots of meetings, especially early on in the diagnosis. Another, hours spent in therapy. Another, hours of parent training to be more effective autism parents. Oh, and phone calls and voice mails and phone tag. Surprisingly, not much email. And you sign your name, a lot. If you are newly diagnosed autism parent, expect the same.
We are both older. That can contribute to having a child with an ASD.
We come from families where there appears to be, perhaps, a genetic predisposition towards ASD's, though prior to our two it went undiagnosed.
The only medically sound indication that a child may be born with an ASD is if there is a sibling with an ASD already in the family.
We did not know Nicholas was autistic until Elena was two.
Looking back, Nicholas actually displayed physical behaviors associated with ASD's while in the womb.
No, really.
We don't talk much about cures.
We don't talk about vaccines at all.
We do talk about neurodiversity. (What's this?)
We are not trying to force square pegs into round holes.
We are trying to get rid of the holes.
That is us, in a very small nutshell.
And as of yesterday, this is Nicholas and Elena.
And we love them more than earth.
We've come along way in the nearly three years since our ASD family odyssey began.
And if you know us, so have you.
ADDENDUM:
August, 7, 2013
Since originally posting this back in May we have decided it is time we pursue a social skills class for both children. They will, once funding is approved, begin a social skills class at a local gymnastics school called Leaps and Bounds (learn more here). It looks to be very promising. The therapist that assessed Nicholas and Elena was extraordinarily talented. They will be working with her and the very talented staff in a very small group setting. We all can't wait for it to begin. Hopefully soon!
Elena will be in school for a full day starting next week.
We will also be pulling back on therapy hours out of necessity, due to new school schedules.
And also, with the enacting of the Affordable Health Care Act, we now deal with insurance more than we have ever dealt with before. Insurance has been great, though our service providers are doing a lot more paper work than they used to do, but so far we can't complain about our insurance coverage. Hope it stays that way.
The documentary will premiere at the end of September. It will give a bit more information about my wife and I as a couple and our everyday situation in general. Even though it was filmed over 18 months ago, we are still living, more or less, the same way of life. We're all just a bit older.
August 22, 2013
We have called an IEP for Elena. We are soon going to have her in another program at another school. The kindergarten collaborative was not the right fit under the conditions it is in now. Over 30 children, about a quarter of them special needs. In a class that size she gets lost in the shuffle. She is also bored. She is academically beyond the curriculum they are teaching. So she wanders the classroom. She requires more attention than that program can provide. She will regress there. It's clear to everyone that she needs to change to a program with less kids and where, academically, she can be taught new concepts and ideas. We will have a new reality yet again very soon. It has not been easy on her. She is one tough kid.
No comments:
Post a Comment