Sunday, February 5, 2017

Services are as plenty as unicorns.

If you are new to autism, I have a bubble to burst.

SPOILER ALERT:  There are no wealth of services to help autism families.  I am not tripping over free stuff to help my kid.

EXTRA BONUS SPOILER ALERT: The older your autistic kid gets, the less there is out there for them.  What's exactly is less than already not that much? I was never very good at math.  Hit me up with that term if you know it.  I lost interest when that math teacher of mine was always looking for "X". (Give it up, Teacher. If "X" wanted you around, you would know it. Stalker.)

SUPER DUPER BIGLY SPOILER ALERT: There are many fine people that do work in schools and social services for our kids and I'm pretty sure they don't even realize just how little there is.  I really hope this is the case because I can't imagine working in a field that has that little to offer and KNOWING that there's often jack shit for a family.  (If you do, props to you. I'm in awe you go and do your job anyway.)

So if you have been following our story, Kiddo started at our district's middle school this fall and it was an utter clusterfuck. It was a glorified babysitting service and he made it be known LOUD and CLEAR that he was not having that. They didn't know what to do with him and so we left.  We are now in a school where they are actually challenging him academically and socially.  So far, it's been a good situation.

But we are still dealing with leftovers from the school district.  Before leaving, our caseworker helped us sign up for Perform Care, which is program in New Jersey.  It was SUPPOSE to help us get in house behavior therapy and some respite for us.  That process started in November.  It took till the last week of January to actually get a therapist in here. Yes, the wheels of that service turn slowly.  Respite? Hahahahahhaa! Like that will even happen in my lifetime.

Fast forward to now and I have a completely different Kiddo on my hands.  His anxiety isn't as bad.  What I needed then, I don't now. Plus even if I still did have a super anxious Kiddo, I still didn't get the BCBA that I needed.  I got a social worker.  A very nice social worker who my son very much likes but it's not what he needs.  If my son had a different type of functioning level, maybe this would have worked.  However, he does not. She's limited on what she can do with him and pretty much every thing she had in her arsenal, we've been there, done that, and made out the sticker chart.  Even she this week was like "Yeah, umm, I'm going to ask for BCBA to come in." cause she's got nothing.

I go to talk to my caseworker who keeps referring to a form I filled out months ago and I keep repeating like my own autism script of "But this isn't the kid he is now.".  This agency keeps referring that I need to have support too. Great, I get that but even the supports are for newbs!  He offered a family support person (kind of like a mentor) to me before and brought it up again.  This is a woman that told me she would explain things like "What's an IEP?"  Ummm, dude. Kiddo is 12.  Catch up. Kiddo's social worker gave me a list of blogs to follow.  I then had to come clean with who I am and how I have my own blog.  I appreciated the effort of what they are offering but to an Autism OG we need something past "Autism 101", ya dig?  Yeah, thanks for telling me about groups like Autism Speaks. I've written for them. Next!

The thing that is going to support me the most now is to get Kiddo what he needs.  Like what about getting a behavior therapist to come to my house to witness the utter magic that is "WTF Wednesday"? I get it. I'll need someone to come early in the morning to see it. I'm willing to make them coffee. Heck,I'll buy named brand frozen waffles for them. I'll even gussy myself up by putting on real pants and a bra.

And are there no college kids who are trying to get some field experience to pad up the old resume for when they graduate that could use a job as a respite worker in the state of New Jersey? I find that hard to believe as someone who was once a psychology major and saw those job offer notices on the department bulletin board all the time.   This is what I asked for months ago. It's February.  Still, nada. Nothing.

What I keep finding is a lot of sociology double speak. A lot of meetings, phone calls, and forms.  Not a lot of actual practice. This is how those folks who do stay on waiting list eventually get what they need.  Cause folks like me say one day "Fuck it." and just walk away from this less than bare minimum.  I'm getting frustrated and pissed off. If I can't get what I need for him now, what's it going to be like in coming years? (YUGE SPOILER ALERT: AWFUL!)

Oh I know, this is when someone will tell me about the large amount of charities and churches that maybe, just maybe, might help my Kiddo. Cause you know, it's not like he's entitled to any governmental service like every other citizen in this country. I mean, that's just silly. We'll just have to rely on the kindness of strangers reaching into their pockets that day. That's a solid plan!  What could possibly go wrong?

If actual services were as plentiful as Legos we would be set! 


  1. I went to one local meeting where people were shocked at the number of kids aging out of special ed. I thought "they have been in the system since the age of is anybody shocked at the number when they turn 21?!!!".

  2. I know the feeling... I have been there and done that with perform care. I have been to hell and back again. What my daughter needs is a experienced bcba who will show up and work with her. I have to jump through the firey hoops of hell to get any services for her. As a single parent it is very hard to afford any type of aba therapy and her insurance does not cover it.

  3. Our private BCBA has been fabulous... They have been helping us early mornings and everything in between. It's not free... We pay for it.... With insurance... It's worth its WT in gold... As it's been a challenging beyond measure month.....
    I'm terrified about turning 21....

  4. My thoughts exactly! Wait I live in a state that mandates autism therapy coverage- unless you're one of those major employers who are exempt because they fall under federal mandate. Wait, I have great insurance.... but they claim it's not a medical issue it's an educational issue so let's make the schools provide it... and the schools claims autism is a medical issue and they don't have to provide therapy either. Shit creek is wonderful this time of year.

  5. I am one step behind you with my 13 year old. Our adolescent inpatient units have even refused us in times of need because of his Autism (not their specialty) and when they did take him, he had needed a 1:1 for a few days because they put him on an ADHD med that made him ballistic. So... Yeah. "We are not equipped to handle someone with your son's acuity level. Good luck." 8 months and we just got approved for state funding, opening the door to the elusive in home support of a SW, counselor, and mentor. 3 weeks of paperwork, interviews and calls and still haven't seen a soul. Raised money and trained a psychological service dog 2 weeks ago but kiddo can't instantly adjust to the responsibility aspect of dog ownership and red tape of bringing a dog to school. Multiple police and crisis team calls in our home and my young daughter traumatized... Yesterday, my husband took our daughter and left for a "break from the hopeless and dangerous and exhausting experience" that is raising his stepson. Here I am... Waiting on the unicorn. Looking for a rainbow. Next week is the IEP so that will bring up more depressing news. I understand that early intervention is key for Autism but we are doing society a huge disservice by abandoning families with adolescents who are on the cusp of needing to be functional adults. I am just sick.

  6. BRAVO!!!!!!One of my biggest pet peeves is my son is 11 nad apparently at 12 he ages out of services.Um hello? If my child was able to be on his own for a few hours ( as I guess typical 12 or 13 year olds are) my life would be so different.But guess what? He can't...Now what? I am a single mom who is a widow. I need to work to keep a roof over my head. I cant bring him to work with me or finish my job by 2 pm.The future for my child scares me...

  7. The future really looks bright! I guess we are all gonna have to get degrees in BCBA to provide those needed services to our kids.

  8. Just try finding - or even researching - residential options.

  9. I live in PA and I can can relate to every single thing you have said. I've been further. My daughter is almost 24. She was allowed to stay in a special needs school until 21, which was nothing but babysitting and asking us to take her to the psychiatrist for more meds, since they seemed surprised every time behaviors showed up! We took her out two months after her last year started. It took TWO YEARS of NO services before she got into a work program. Then case manager says can't afford five days or transportation, so instead of going back to work, I am stuck spending gas money and an extra car payment driving her 80 miles a day. Then case manager says since she took the slot for the HCBS she has to go back on the end of the waiting list for waiver! THERE ARE OVER 17,000 PEOPLE ON THE WAITING LIST FOR SERVICES IN PENNSYLVANIA! "Honestly, the only way a slot opens is when someone dies." WTF??? She has epilepsy and I can't leave her alone for five minutes to live my life. Respite? NEVER SEEN IT, I THINK IT'S A MYTH! Maybe if our kids can become a voting block they won't be invisible anymore!

    1. Of course she wanted to vote for Jeff Dunham last election! I'm thinking about teaching her how to write him in!

  10. We are a military family. We do have aba coverage which is great but you have to have a willing BCBA that will take you and make peanuts! There are also so many hoops to jump through with tricare (military insurance) that a lot of parents just stop. And to top it off we move every 3 to 4 years so we start the process all over again. New therapists, new schools, new ieps, oh and we are never somewhere long enough for a medicaid waitlist of any sort (my children don't qualify for Medicaid here but maybe the next state) just sucks!

  11. My grandson has advanced the most with ABA ...4 years in the insurance co denied him the therapy worded something wrong 2 months no therapy !