Welcome back to “Being A Voice!” I hope everyone has enjoyed this series and that it has been helpful. I am working hard to ensure that I emote through my writing and go into as much detail as I can. Please leave feedback if I am lacking in any of those areas, or any other areas I didn’t mention. Today we will be talking about services. These can range from special ed services in school to other services offered through government, public or private sources. My mom will also be returning as a guest contributor, as we believe the perspective of a parent is very important in this aspect of life on the spectrum. Let’s get started!
A foreword about diagnoses and services…
If you get nothing else from this post, get this: Sign up for services ASAP. A
list of resources we used will be included along with this post. If you
have or suspect a diagnosis, learn everything you can about services offered in
your state and community, and get on the waiting lists immediately. Do this
even if you aren’t sure you will want, need or qualify for the service when it
becomes available. In many states the wait time for programs that cover
therapies, respite, and community assistance is well over a decade. In Texas
there are over 156,000 people awaiting services on the Medicaid Waiver Program
“interest” lists. There are 21,000 receiving services.
Johnny’s first diagnosis of Speech Impairment was in preschool, and his first services received were in PPCD, Preschool Program for Children with Disabilities. Early in his 1st grade year, one of the Special Ed teachers abruptly told me she wanted him to be tested for autism. I was taken aback and reacted defensively. Of course, I could see differences between him and other kids in his speech, certain behaviors, and socialization. But I had big denial and big resistance to “labels.” Or more accurately, the stigma attached to certain labels. I resisted what it might mean for his life and mine. I was ignorant about diagnoses, services and therapies. Please understand, this was 19 years ago, and children were not being screened and tested as commonly as they are today. The diagnosed autism rate was approximately 1 in 160, vs. the 1 in 57 today. Neurodiverse was not a word, and 99% of the population only knew of autism from Dustin Hoffman’s performance in the 1988 movie, Rainman.
I remember consulting with a local ABA center and visiting with the owner, explaining my thoughts about testing. She looked at me like I had two heads, then flatly said to me, “Labels are how we get services.”
No truer words were spoken. If you want speech therapy, OT, an IEP, classroom accommodations, extra support, or any type of supports during childhood or adulthood, you will need that diagnosis in writing along with all other supporting evidence and assessments.
I had Johnny tested by a private practitioner. The diagnosis was PDD-NOS, Pervasive Developmental Disorder – Not Otherwise Specified. This diagnosis is now simply considered “ASD,” Autism Spectrum Disorder. Thus, began our journey through the world of ARD meetings, IEPs, special education, and state funded and private services.
PPCD
I don’t remember much about PPCD, other than the fact that it took place at the local senior high school, and we had a pet hamster in the classroom. So, I’m going to let my mom talk about this part.
PPCD was pretty awesome. Great teachers, a fun environment with other special needs kids as well as neurotypical peers, called “Pals.” Johnny looked forward to going and I enjoyed peace of mind.
Special Ed – Elementary School
The services I started out with in kindergarten were based on my first diagnosis, which was a speech impairment (SI). Even after I was diagnosed with PDD – NOS in 1st grade, I would continue to only receive services based on the SI. In 1st grade, I had 3 different aides who would come into the classroom to work with me one-on-one throughout the day on speech, paying attention, and completing assignments.
I don’t remember much about what all I worked on with the aids in 1st grade, or how many I had in 2nd grade, but I think it’s safe to say that I needed a lot of help with math, if my struggles with it in middle school are any indication. I don’t recall working with anyone one-on-one in 3rd grade, but I do remember one of the special ed teachers gathering a group of us to do some work in one of the smaller rooms in the afternoons. This was also done in 4th grade, but that was more before lunch time if I remember correctly (and I usually do). I also remember going to speech sessions with a small group of classmates once every week.
There is one aid whom I remember quite clearly named Mr. M (No, he was not Johnny M.’s father, thank God. Wouldn’t that have been awkward!). I don’t remember whether he came in 3rd or 4th grade, or even 2nd grade, but I do remember that he helped me a lot with math. He was fun and easy to work with (although I certainly didn’t make it fun or easy at times). So, imagine my excitement when I found out he was going to be my homeroom teacher in 5th grade! He was definitely one of the highlights of my time in elementary school and one of my all-time favorite teachers. If you’re reading this, Mr. M., thank you for making a positive impact!
I remember the Special Ed I received in 5th grade much more clearly, most likely due to the events with Jack and Johnny M. that happened alongside in that year. In the morning, I went to work on math in another classroom. Sometimes it was just me, other times, it was with a small group of classmates. In the afternoon, closer to the end of the day, I went with two other classmates to work on language arts and reading skills.
On schools… One of the most common questions from autism parents is, “What school districts are best for special needs services?” Here’s the truth: While some districts are more supportive of a robust Special Education curriculum and services, individual schools can vary widely based solely on the principal and staff within the school. Every principal, teacher, para-professional, and diagnostician can make an enormous impact. We were fortunate to live in two excellent school districts. Within the schools, we had good experiences and bad. For the most part, the elementary school staff Johnny had been exceptional. The principal was well-informed on all different disabilities, actively participated in ARD meetings and took genuine interest in Johnny’s education. The teachers were kind and the aides were amazing.
Even with amazing staff, we didn’t get all of the services we wanted. And each change of school and staff brought more challenges. I educated myself on state rules, IDEA (Individuals with Disabilities Education Act), made compelling arguments in ARD meetings, and enlisted the help of professional advocates.
When Johnny was 10 I became aware of state funded services (Medicaid Waiver programs). Through a connection at his school I found Life Planning For Families with Special Needs, Inc., a niche firm in Dallas that helps parents and caregivers navigate the incredibly complex world of government disability services, financial and legal matters. (http://www.txlifeplanning.com/). I put him on all of the waiting lists. This was 2005. It was 2015 before his number came up for the first one, Texas Home Living, 2017 for the second – CLASS, and we’re still waiting for the third – HCS. The list keeps growing as need rapidly outpaces funding.
Special Ed – Middle School
I don’t remember when my mom and I really started talking about my diagnosis, and why I needed extra help in school. But I do remember that it was around middle school when I started to feel inferior and less adequate because of it, aside from when I was in Annie Jr., of course. After I had a schedule change a few weeks into the school year, I met my aide for the year, Mr. S. He would be in attendance for almost, if not all of my classes, and would help me on certain assignments where it was needed. And when I say needed, I mean truly needed. He definitely pushed me farther than I had ever been pushed at that point. Sometimes it could come across as harsh and just a tiny bit scary, but overall, he made what was my least favorite year of middle school much more bearable. And I don’t believe it’s an easy job for the aides either. Even though we had our ups and downs, it was certainly an experience I will never forget. So, thank you, Mr. S. You were another one of the best! Hey, that kind of rhymed!
I didn’t get an aide in 7th grade, but I did continue to have a few smaller classes for math, language arts and reading. I had an aid in my Texas history class, but for whatever reason, that was the only regular class I had one in. I remember having a lot of trouble with math in 8th grade, however, which was tedious and frustrating. The teacher’s methods just didn’t go well with my learning needs/style.
Like middle school isn’t hard enough, right? Yes, it was somewhere in this timeframe that I began discussing Johnny’s diagnosis with him. Timing of this is an individual decision for each family. I firmly believe our neurodiverse need to understand why they have Special Ed classes, why they have a paraprofessional assisting, how their brain is working differently, and how to advocate for themselves. There is a time for them to participate in their ARD meetings and their IEPs. It’s helpful for them to have as much understanding as possible of themselves and their unique needs. There is nothing in a diagnosis to be hidden or feel shame around.
The Worst Year of my Life
As you may know from reading previous posts, I just couldn’t catch a break when I started high school, and this is also true in the services aspect. Like most school districts, different middle schools feed into one larger high school. So, freshman year was a different school with some kids knew, and I lot that I didn’t. I didn’t know any teachers, or the aide who was in his first year of that profession. He wasn’t really on top of things, so nothing was really going well. In the second semester, my schedule changed in a big way. I was put into smaller classes, with the exception of pre-algebra, which was already small. This definitely made things a lot easier, and I no longer shared classes with any of the bullies. I also had a new aide, who was much better than the previous one.
We “limped” through freshman year, one day at a time. As I noted, staff make all the difference and while there were some really caring teachers, the administration and some Special Ed staff didn’t seem to be on their game. I wish I had found better tools during that time to help Johnny. He did begin seeing a counselor during 2nd semester which was helpful. I also started looking at other school districts to move to. This isn’t always an option for families, so the pure difficulty of working through these issues can feel really defeating. Johnny did have a different paraprofessional second semester, and since that person was his front-line support system through the school day, it was a solid improvement.
The New High School
When I had to move and start at a new high school, I probably got the best help since 6th grade. I was still in remedial math (essential algebra during sophomore year, essential geometry during junior year, and consumer math during senior year) in addition to having a study skills period each year where I could work on homework. I say could, because it didn’t always mean that I did. My case manager (who was my study skills teacher during sophomore year) did well in making sure I was staying on top of my grades. In addition, the rest of the school was run exceptionally well, which is impressive since it is one of the largest in the state.
Change for any person requires an “adjustment curve,” that period of time when you’re getting used to new people, surroundings, schedules. Like most with ASD, Johnny thrives with routines and predictability. Change is hard. We were both nervous about this big new school. It’s bigger than the community college. And he knew no one. We met his teachers and walked his class schedule before the semester began. We organized his notebooks and materials ahead of time. We planned his lunches. Of course, it was still different. Of course, it was still hard. But he is incredibly resilient, and he adjusted well.
Despite being a huge school, the administration was (is) well structured. We were fortunate, again, to have a knowledgeable principal who contributed to ARD meetings and directed staff. The Special Education teachers, case managers, and transition specialists were responsive. They called and emailed me with any concerns, which I welcomed.
After High School
By the time I graduated high school, I was still on the wait list to receive services from a number of providers. At this time, LifePath Systems provided respite services and I had a couple of great providers that helped in this transition time. Michael was a big help when I tried taking classes at my local community college. He also helped in making sure my days were structured with activities when I chose not to return. Josh and I graduated from the same high school at the same time and was fun to hang out with.
I also worked at Kroger before and after graduating, but it could be very stressful, and I was desperate for an out. We decided to look for supported employment services that could help in finding a more fitting, long-term job. We ended up finding LaunchAbility, and in the fall of 2013, I enrolled in one of their training programs/internships at Blue Cross Blue Shield, where I learned how to sort mail in the mail room and go on delivery runs on the different floors of the building. It was a very solid learning experience, and I had a newfound hope that I would find a place in doing something I discovered I actually enjoy doing.
That hope started to dwindle down, however, when spring came. Ironic, isn’t it? Losing hope in a season when things start to grow.
Anyway, we got a case worker from LaunchAbility and started the process of what seemed like endless interviews. Whether it was me, my availability, or location, none of them were a good fit. Having said that, however, I still value the interview experience, and I don’t feel that it was a fault on LauchAbility’s part. I would confidently recommend them to anyone who is seeking supported employment.
In February of 2013, while this was still going on, my mom learned about the PATHS Program offered by the College of Education at Texas A&M University in College Station (Whoop!). Sometime after I graduated high school, I had a dream about going there. Granted, I had never visited Texas A&M before, so I thought of it like a bigger version of the high school campus. Knowing that I could see that dream become a reality (even if it was only for one year and it was a special program) was life changing. Of course, it wasn’t as life changing as giving my life to Christ was, but it was pretty darn close! I went through the application process, and on May 5th, 2014, I received my acceptance letter to the PATHS program. I moved to College Station in July 2014 and would end up staying for 4 years.
On transitions… Johnny graduated from high school at age 18. He had the option to stay in school until age 22. We elected to have him graduate with his class of peers for several reasons, but I underestimated the difficulty of transitioning. He attended community college and we found the supports offered to be vastly different from high school. He just wasn’t quite ready for it. My advice is to develop a solid transition plan for post high school. Where will your child live? What will their daily schedule be? What supports will they have? If they will transition to working, how will this occur? Get specific. I wasn’t this specific, and reality came fast when we lost the basic structure that a regular school day provides. The PATHS opportunity was a big game-changer that we are both grateful for.
The College Station Era
Around December of 2014, when I was living in College Station, I heard from my mom that after almost ten years of waiting, I was finally approved for Texas Home Living service (TxHml; link to program description here: https://hhs.texas.gov/sites/default/files/documents/doing-business-with-hhs/providers/long-term-care/txhml/what-is-txhml.pdf.) This provided some community support, helping me get groceries and get to appointments. The program also covers certain therapies. I was in the practicum half of the PATHS program, which meant I needed transportation to and from certain learning sites that weren’t close to the bus route, so the approval really came in the nick of time!
When I had to change practicum sites halfway through the semester, Beautiful Abilities had just launched their new day-hab program. I talked to my provider about volunteering there, since I needed more practicum hours to graduate, and they approved, along with the intent to hire me part time when I graduated and got my certificate. I worked at BA part-time for nearly 2 years. After graduating PATHS I moved to an apartment within walking distance of the day-hab, and my supervisors were gracious enough to give me a ride to work when it rained. I continued to receive TxHml benefits until my name finally came to the top of the waitlist for CLASS – 12 years after my mom signed me up.
When I heard I was approved for CLASS, and the benefits that came with it, I was ecstatic. We were able to find attendants through a friend of the family and referrals. Most of these hours were spent with Mackenzie, who became a good friend and advocate for me. In addition, I was approved for music therapy and recreational (we can just call it rec) therapy. Rec therapy was all about finding activities in the community. Options for this seemed limited in College Station, and I was already doing things with friends on my own. Music therapy, however, was and has been incredibly impactful. Through that, I started writing original worship songs (which are still work-in-progress) as well as practicing my singing voice and playing guitar.
When I was approved for CLASS, things started to go a little sour with Beautiful Abilities. They were a provider for TxHml but not CLASS and I lost my job with them for reasons I still don’t fully understand.
Now, I’d like to take some time to brag on Mackenzie. In spite of the fact that she was a college student, who was the equivalent to a chicken running around with its head cut off a lot of the time, she still managed to do her best. And let me tell y’all, her best was amazing enough to make a positive impact on my life, and that’s not just because she got me to like carrots, celery, ranch, Canes and Chick-Fil-A sauces, and boneless wings tossed in honey barbecue sauce. Through our work together, she became one of my best friends, and I miss her every day. She put up with all my highly/hyper-sensitivities and other things on a near-daily basis, and it takes someone with a lot of love, patience and compassion to do that. All while she was working her butt off to become a teacher. Thank you, Mackenzie, for having the love, patience and compassion to deal with me, and for being one of my best friends.
What now?
Since moving back to my hometown, Michael has come back into my life as an attendant through CLASS. There are more service providers, resources and activities in the metroplex that surround me. Music therapy is still going well.
To my rec therapist, Ashlee, thank you for showing me all the fun opportunities I didn’t know I had before, and for being a such a fun partner throughout our sessions.
To Michael, thank you for your help back then and for agreeing to come back into my life and help me live it to the fullest potential. Believe it or not, I actually missed you and your stupid, annoying, yet also, somehow funny sense of humor when I was in College Station.
To Josh, thank you for your help back then, and for reaching out to me after I came out on Facebook. We still need to hang out soon, by the way.
And thank you to all my music therapists, past and present, for all your help as well.
Final Thoughts
Knowing about my diagnosis and my needs, has definitely been key in ensuring that I get the proper services that help me live my life in accordance to my dreams and aspirations. Parents, I know it is daunting, but if your child has the ability to communicate verbally, or by using communicative aids, there should come a time where you sit them down and discuss their diagnosis with them. If your child is able to speak for themselves, it will make a world of a difference.
Thank you for reading. If you found this to be helpful, please share it wherever you can. I’ll see y’all next time!
Mom’s Postscript: All of the services Johnny has received contributed in some way to each stage of his life. He needed the paraprofessionals and extra support to get through the school days and actually learn. TxHml and CLASS allowed him the to live semi-independently in College Station and locally, which has been a huge step in his transition to adulthood. It can be easy to complain that what’s available is not enough, but we’re beyond grateful for what we have.
I also know that government services are not the ultimate solution for helping someone live their full potential. State and Federal assistance is designed for the masses and not individual situations. Funding will always be lower than demand. The qualifying rules can impose limitations. So, our present focus is finding the solutions that will support him throughout his life while allowing him to live the fullest life possible. Housing, employment, healthcare…these are lifetime basic needs to be met. I’m optimistic that creative private sector solutions will emerge to serve our (neuro)diverse people.
Resources:
Life Planning for Families with Special Needs: http://www.txlifeplanning.com/
Navigate Life Texas: https://www.navigatelifetexas.org/en
Medicaid Disability Services & Waivers: http://medicaidwaiver.org/index.html
Texas Health & Human Services: https://hhs.texas.gov/
Puzzling Life 
You are awesome!!!
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As are you!!!
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