It's been a while and just devastated my son is the worst case of autism in the country!

Discuss getting a diagnosis, educational help & electronic devices and apps for autism.

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luvpiggy
Posts: 103
Joined: Tue Feb 10, 2009 12:59 pm

It's been a while and just devastated my son is the worst case of autism in the country!

Postby luvpiggy » Tue Mar 29, 2016 12:04 am

It's been a very long while since I posted on here. The last time I posted was in 2014. My son with very severe autism, non verbal, etc. went from having the best school situation of his life that he could possibly have in a southern state with very little resources to the bottom completely falling out with all the great staff at school leaving at once and his GI issue of chronic constipation landing him in the hospital and the psychiatric ward of the hospital to calm down. His school situation became so horrible that the new staff were abusive and letting him escape out of the classroom to the outside of the building almost daily. We had a safety plan in his IEP, but the school wouldn't follow it, etc. We got a lawyer who turned on us in mediation, and we later found out that it is one of his number one tactics to pretend to be on the parents' side, go into mediation and side with the school system and get them to pay for mediation to make the parents go away and take away any teeth for a lawsuit. The only recourse was to get home bound services for only three to four hours a week based on our son's GI issues, and that would be all we could do. His time at home with just me with the loss of his friends, girlfriend, structure, etc. was just horrendous.

So what were we to do? For most of my son's education in a Southern state of the U.S. with little resources and options, I always thought in the back of my mind that we should move to a better state with better autism resources. I did my best to research during that hellish time, and Pennsylvania kept popping up repeatedly as an option with a reasonable cost of living, medical assistance not based on income, a swath of private autism schools that public school systems could pay for, wrap around services in the form of behavioral health services where a behaviorist and therapeutic support person could work with the individual with autism at home, in school, or in the community in addition to school support all paid for by medical assistance.

So we did our best to find my husband a job in the best area we could in strategic range of these schools including the highly advertised Vista Autism School in Hershey Pa. However, if that didn't work out, there were just so many options. Somehow it all worked out. My husband found a job and his job in the south gave him extended leave for 7 months to do a trial run. We moved to a school system not in the best county in the state near his work that agreed very quickly to put him in a new autism school that parents in the area raved about. We almost immediately noticed some red flags at the school-that all was not what it seemed, but mostly we were thankful that he was placed so quickly at such an expensive school. Months went by, and we noticed the school made our son start over from the very beginning of his education and wouldn't even explore why he was not functioning at the same level as he was in the south when everything was good for him. Also, they used every excuse in the book not to use his communication device and said that he had to be at a higher level of PECS to have ever used it. I saw a van driver grab my son and yell at him for hand mouthing and making noise when he was dismissed early for a snow event. Then although we checked constantly with any school we met with in the state about whether or not he would be sent home for bowel movements due to medications for his constipation prevention and described how horrible it could be with every school saying they wouldn't do it, this school sent him home and acted as if we had never had the discussion. Our school district violated obvious special education law with his IEP. Our son ended up back in the hospital and psychiatric facility when a major medical center in the area ignored our cries for help that we believed he was constipated. He then ended up at another world class facility that confirmed what we knew, but he was so upset that he had to be hospitalized in a behavioral health facility.

So, in Pa, there were plenty of other school systems to try so we moved to a longer term rental in another district that said they would place him in Vista and look at all other options including options closer to Philadelphia. We applied to one school near Philly and he was rejected. The school system representative did a tour with us at Vista and seemed very active in trying to get him in. She claimed she applied in October of 2015, but we checked in January and Vista said they didn't get the application but also were just very discouraging in an indirect manner about us even applying there. We finally supposedly got our school system to apply in February and this week we got a rejection saying there wasn't an opening for the upcoming school year, although Vista has a very transparent process where you apply, are screened and then put on a waiting list if there are not any openings, so rejecting someone because the school does not have current openings is usually not their practice. They say to apply even if there are not openings because something could come open.

So, my son is the worst case of autism in the country so much so that autism schools that regularly accept individuals with severe autism do not even want him to apply! How do I cope with this? He is at another special education school in an autism class that seemed good at first with a good teacher and one to one, but as the months have passed there have been issues and now the seemingly good teacher is leaving to take another position in the school. It's just so hard to deal with all of this rejection. We went through so much to get here to try to do the right thing for our son.

Santosg
Posts: 196
Joined: Sun Aug 17, 2014 5:33 am

Re: It's been a while and just devastated my son is the worst case of autism in the country!

Postby Santosg » Tue Mar 29, 2016 2:58 am

I'm sorry you are having such a hard time. It must be so tough.

From your post I think you're currently experience HUGE anxiety from what's been going on. The first thing you've got to do is deal with the anxiety. Calm down. Take a break. Get some perspective. Give yourself a day to just relax. Watch a funny movie or do something you really enjoy. Let your husband do something like that too. Then go on a date where you don't think about the problem for just one night.

Okay, so now you're refreshed and you can start to think clearly. First, your son's developmental outcomes are not going to be fixed by any school. You are his only advocates and saviors. One way or another, you'll make it work. And it will work.

Get a medical note from a DOCTOR stating that your son needs to be given at least two 10 minute breaks to try to have a bowel movement while in school. Have a schedule printed and have the individual or individuals who are looking at for him initial it everyday. State that you are tracking his bowel movement for his doctor and require documentation to see its progression.

Have a meeting with his providers. Ask for his aides and not just the teachers to be present. Explain what is at stake for your son. Explain how you are moving heaven and earth at home to give your son a fighting chance and how you want to avoid another episode in the psych ward. Don't come off as angry. Don't be demanding. Instead, speak from your heart and speak with love. I don't think people are intentionally trying to be mean to your son, it just that he is one kids among many kids. Explain who you are and who he is, explain your love for him and ask for their help. Anyone with humanity will respond by just taking that extra second to help your son adjust, being a bit more encouraging.

Structure is important. I get it. But your son is in a new enviorment. He needs to adjust. New rules, new school, new people. Find activities in the community that he might like and begin trying to incorporate him into them. Try unified sports teams, swimming. Going to the movies each Wendsay if he has done a good job mastering a new goal, etc. If he is resistant at first, make sure to offer a reward that really motivates him if he does a good job.

You can chance your life and your world simply by changing your perspective and your reaction to thinks. If have a lot of strength. Quiet the mind, simplify your life in terms of short term goals you want to achieve, and find a bit of joy in each day. Life will get better and is getting better.

Keep up the good work.

luvpiggy
Posts: 103
Joined: Tue Feb 10, 2009 12:59 pm

Re: It's been a while and just devastated my son is the worst case of autism in the country!

Postby luvpiggy » Tue Mar 29, 2016 9:36 am

Santosg,

Thank you so much for taking the time to respond to my post in depth and with such compassion. All of your advice was good advice even if all of it cannot apply to our specific situation, and really, everything you said was so heartfelt that that in and of itself made me feel a little better.

What stands out to me from your advice is the fact the school did become our main source of support and community for our son. School wasn't always that way-of course we wanted him with the best teacher available in the safest setting, etc, but there were many years where we were at odds with his school in the south, etc. Somehow and miraculously, from 2010 until 2013 school just became a great place for him with a strong community of relationships and a number of people who genuinely cared for him and us. He had a girlfriend who was in his class for several years! His quality of life was the best it had ever been, and we just did not expect that, and then it made such a difference for all of us that our worlds just crashed when it was lost. In addition, there was overlap with school and the community because his teacher, bus assistant, and classmates all participated in a special needs baseball group, and they were drawn to do so by him.

So, I just tried to get that back and was willing to move thousands of miles away to try to find a school that could be that source of support for him. However, even when I was touring the revered Vista, part of me thought it really wasn't that big of a deal. It's just a school after all that is trained in intensive behavioral techniques. It's just a school, but again, it's hard not to want it to be more when we went through so much to get here. So, yes, I will need to change my perspective on many issues because I am way too devastated. He could no longer go to school in the south because it really was abusive and unsafe, and there weren't any options. He really does need to go to school for our family to get any type of break. So he's at a school right now, and we will do our best with advocacy and advocacy help to make sure he is safe and not abused though, but it's just a school.

Thank you,

luvpiggy

Winnie
Posts: 4227
Joined: Sat Mar 18, 2006 2:48 pm

Re: It's been a while and just devastated my son is the worst case of autism in the country!

Postby Winnie » Wed Mar 30, 2016 4:52 pm

Hi luvpiggy,

It's good to hear from you -- but I am so sorry to hear that you and your son are having another rough go of things. Take heart in the fact that you are doing all you can to find a good placement and situation for your son, meanwhile, we can all hope that a great school placement opens up for him. I wish I knew of something helpful to say that might help in this situation.

But maybe there is a silver lining -- as he transitions into adulthood and out of the school situation, does PA have services for adults with autism that may be helpful? You know you aren't missing out on anything in this state! If PA looks to be more positive for adult services a few years down the road, then your move will definitely be worth it.

Hoping you find a good situation soon -- take a break, catch your breath, and then keep up the advocacy!
Winnie
"Make it a powerful memory, the happiest you can remember."

luvpiggy
Posts: 103
Joined: Tue Feb 10, 2009 12:59 pm

Re: It's been a while and just devastated my son is the worst case of autism in the country!

Postby luvpiggy » Thu Mar 31, 2016 12:48 pm

Thank you Winnie. :) Yes, that is a good point about adult services. Especially compared to where we were living in the south, PA appears to have more options for adult services including both an IDD and an Autism Waiver. In Vista's rejection email, they advertised their new adult service program, and yes, that was one of the reasons I wanted him in the school there to transition into the adult program more easily. His school he attends now does also have an adult program. Deep down, I know we did the best we could and had we not even tried, unless things dramatically improved where we were, and they haven't, we would be kicking ourselves for not taking the chance.

Thank you,

luvpiggy

JustinsDad
Posts: 63
Joined: Sat Mar 23, 2013 3:24 pm

Re: It's been a while and just devastated my son is the worst case of autism in the country!

Postby JustinsDad » Mon Apr 04, 2016 1:15 am

Welcome to Pennsylvania. I'm sorry to hear that that school wasn't able to meet your needs. We are in a similar situation. My son is 12 and severely ASD with IDD. We got the diagnosis about 10 years ago and sorry to say but things were much better back then. This year has been especially tough as politicking between the governor and the state legislature (who are of opposing political parties) has resulted in significant delays in passing a budget in order to fund education and public welfare. If I might, I'd like to offer some insights or advice:

1: Get a blended services coordinator (BSC). This individual works for you, NOT the state or the school district. Do not settle for administrative level support. There is a higher tier (I forget what it's called) but BSC's on this level have smaller case loads and should be more proactive. Their job is to go out and get services for your child's autism spectrum disorder. Ours has been a Godsend and goes above and beyond - sometimes even stepping in to advocate for our son during trying times with service providers who sometimes feel that their own interests supercede those of our family.

2: Get an Independent Supports Coordinator (ISC). Like the BSC this person works for you, not the state or the school district. Their role is to help get your son services - primarily later in life but they are also instrumental in getting your child in a supportive living environment. They are instrumental in getting your child a waiver so that medical assistance will cover expenses that your own insurance may not.

3: Get frequent psychological evaluations so that your child is eligible for medical assistance through the autism waiver for Medicare/Medicaid. In my experience, it's best to seek a third party psychologist of YOUR choosing; don't rely on the school district's psychologist. They do not specialize in autism and they serve the school district - NOT your child.

4: Request IEP meetings with the school on a regular basis. As a parent it is your legal right as is their responsibility to give your child unhindered Free Access to Public Education (FAPE); even if you child is in a private school, your home public school district has oversight to ensure that your child's education needs are being met based on his ability. Get your service coordinators involved too.

5: Enroll your child with Project Lifesaver. Even if your child doesn't need a GPS it's a good idea to make first responders aware of your child's cognitive abilities and challenges.

6: keep a crisis line on speed dial or programmed into your phone. The other day I called it because my son was showing signs that he was ABOUT to have a meltdown. While the RESOLVE program does offer mobile therapy they are not authorized to physically interject. It's good to have a person on the line to keep YOU calm though.

Those are just some ideas offhand. I can think of several more but the hour is getting late.
Neil

Father to Justin, age 12,'dx of ASD and ID and Joseph, age 9', dx of ADHD

luvpiggy
Posts: 103
Joined: Tue Feb 10, 2009 12:59 pm

Re: It's been a while and just devastated my son is the worst case of autism in the country!

Postby luvpiggy » Tue Apr 05, 2016 10:31 am

Your advice is wonderful, and it shows that although we moved here for school, we have been too trusting of the school system. In the southern state we are from, there is so little money for special education that even with the funding issues regarding politics this state is still a gold mine so we didn't expect that money would still be an issue. I don't know if it's that we are naive or just desperate. :( I'm not sure that we have a BSC, but we recently got an ISC who put our son on the waiver list but after that meeting hung up on my husband when he called to ask her a question about a possible service and just never returned his call. If a BSC is the behaviorist provided by wrap around to supervise a TSS then we have one who is nice and trying to point us toward services. Our son qualified for Medical Assistance pretty quickly and has all of that, and it was renewed this year. Yes, we most certainly need independent evaluations. We're in the process of trying to hire an educational advocate and that is even difficult.

Thank you,

Luvpiggy


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