Therapies Are Done

Brandon’s last day of school was two days ago. He is still saying “no school” occasionally, but not nearly as much. Now we are hearing “day penguin” (program) and seeing the smile when he says it. And, of course, he wants to know when he is going to Cabelas.

Steve was quite moved looking at the picture with all the signatures of Brandon’s school village. He may have shed a tear or two. I couldn’t understand why he was so emotional about Brandon leaving school, so I asked him to tell me what he is feeling.

Steve feels like it is the end of an era for Brandon. And it is. The educational experience Brandon had was the best we knew to do for him. But it wasn’t only us. There were teachers, paras, therapists, friends, etc. All of those folks were so very important in getting Brandon to where he is today.

Steve’s thought was this….our village just got a lot smaller. We can’t just get new therapists to help with language development. Or a music therapist to help him navigate his world. Brandon responds so well to music and that resource is now gone. We are both so proud of how far Brandon has come, and all those people were involved with that. He has been receiving these therapies for 18 years.

Well meaning friends have suggested we look into our insurance company helping with someone else of the cost for continued therapy. I have done that. And it does not look promising. Insurance coverage for therapies for adults with autism is very limited. The psychiatrist appointments are covered. Medications are covered. Therapies are not.

Our insurance company will only pay for needed therapies if there is an projected end date. For the most part, the insurance company says that should be six months. Autism doesn’t stop when the individual leaves the safety of the school system. Brandon will have autism for the rest of his life. And he should be able to have affordable access to those therapies.

Brandon started using words to communicate when he was 6-7 years old and his vocabulary is still quite limited. A lot of therapy and support helped him develop more words and how to use them appropriately. We are hopeful that we don’t see a language regression, but we know that is a strong possibility.

So what do we do about that? All of us here at home will continue talking with Brandon and encouraging him to use his words to communicate with us. We know the folks at day program (staff and clients) will talk with him. I will review his IEP to see what the speech goals were and how I can continue some of that at home.

I have friends from college who are speech therapists. I will most likely reach out to them for support and guidance (get ready my KT friends!). I tried to assure Steve that while our village may be smaller right now, it will grow again. The folks in our village may change and those changes will continue throughout Brandon’s life.

We also talked about how brave Brandon is. He was ready to be done with school and start his adult life. Everyone gets nervous with starting something new. A new job, a new relationship, a new home, whatever the change may be. Someone with autism is no different.

Right now, however, Brandon is handling this newest change like a rock star!

Our Village is Changing

Now that the happiness has settled in about Brandon’s immediate future, some new anxiety is creeping in. Our village is changing.

He has been in school for so long. I know those people. I trust his teachers and therapists, and paras. Brandon is comfortable with them. He is well liked and I always hear how sweet he is. And he is!

I believe his school village trusts me, too. They know I like to hear the good stuff. They also know I need to hear some of the more challenging stuff. I trust they also have Brandon’s best interests at heart.

Now, Brandon is entering his adulthood with different people around him. People I don’t know. While I have met all the folks who will be working with Brandon, I don’t know them. To be fair, they don’t know me, either.

How do I help build this much needed trust? What does my part in this look like?

I will be patient and respectful. I will be honest and I will listen. There will be lots of questions about Brandon. Why is he jumping, why is he not eating, why is he sniffing everybody?

There will be questions about his communication style. I will tell them that, yes, we must ask him if he had a nice time after every activity. I will also let them know that occasionally he wants us to ask if he had a fun time instead of a nice time.

I will tell them that when he is rubbing his hands together and jumping in his chair that he is either anxious or excited. I will tell them that, yes, that is heavy metal music he is listening to mixed in with the Christmas songs. (I blame Steve and Josh for Brandon’s love of heavy metal)

I also want them to know it will take time. I am excited for them to get to know Brandon and for him to get to know them. He will let himself be known and it will take time.

I want the newest members of our village to know they can ask me anything. I want them to understand that I know my son’s limitations. And that I will work with them through those limitations.

It will take time to build the trust between us. But, I do have a basic trust before we even start. Each time I have visited, I have seen folks with disabilities laughing and having fun. I saw folks playing computer games and others making shopping lists. I talked with one young man who was excited about the upcoming pizza party. Puzzles and arts and crafts were being done.

They were busy and they were happy.

Now it’s time to start to building this new relationship. I am looking forward to it. I think Brandon is, too.

Time To Move Forward

Brandon and I went for a tour of the day program today. The transition is going to start next week with two days per week. We will work our way to five days over the next couple of months. Brandon is leading this process and we will go at his pace.

I explained what we were doing as we drove to the tour. I could tell he was a bit anxious. He was rubbing his hands together and kept wanting me to give hand squeezes. He doesn’t always understand why hand squeezes can’t be done when I am driving.

Ready to take the tour.

The employees met us at the door with smiles. Brandon was still nervous. There was a lot of anxious jumping and hand squeezes.

As Brandon and I were walking through the building, I became more and more confident about this working. Brandon saw some people he knows and he met a lot of new people. He smelled things (and people), he touched things, and he did his happy jumping more than once. He was calming down and I am so proud of him.

The van will pick him up around 7:30am and bring him home around 5pm. He and Steve will have the same schedule. There are no summer breaks, spring breaks, winter breaks. For the first time in 17 years, he will have somewhere to go year round.

Wow!! But that does beg the question…what about me? What is next for me? Joshua is headed to college, Alex works full time, and Brandon will be doing his thing. They are moving on to the next chapter of their lives.

It’s time for me to do that, too.

I know I want to get a job. Something that gets me out of my house. Something with more adult interaction. I don’t know yet what that looks like, but I do know that I am ready.

Here’s hoping the next chapter of my life is as wonderful as this chapter.

Phone Calls, Emails, and Paperwork

Today has been an absolute flurry of activity regarding Brandon’s post graduation plans. There were phone calls. There were emails. And there is much paperwork to be reviewed, signed, and returned.

We received the letter confirming funding from the state run program for day program services. And now we are off and running.

First on the agenda was scheduling a physical, with a TB test. The one with the needle that goes just under the skin and makes a little bump. Needles are not Brandon’s favorite thing (mine either). Knowing I might need some help with this, I asked Josh to go with us. And since everyone wants to start the transition process next week, we had to do this today so the skin test can be read on Friday. Poor guy…stitches on Sunday and another shot today.

Once the physical was scheduled, I called his teacher. She is wonderful and is so excited for Brandon to start the next chapter of his life. She is emailing a copy of his IEP with a bullet point list of Brandon’s strengths for the day program. She is also sending forms home for me to review, sign, and return.

Brandon’s teacher indicated that Brandon may be ready to attend the day program full time before the school year is over. My one concern about that is graduation. Steve and I want him to be able to walk across the stage and get the diploma he has worked so hard for. His teacher assured me he will walk in the graduation program, regardless of where he is going during the day. He deserves that! Yippee!!!

After talking with his teacher, I called my contact person at the day program. She was aware the funds have been approved and is ready to start talking about the transition and what that will look like. One day a week for a few weeks? Two days a week? It is all a bit much to take in and seems to be happening so fast.

We scheduled a time for me to take Brandon to the program for a tour. I know there are participants attending the program who went to school with Brandon last year. I hope seeing some familiar faces makes it a bit easier for Brandon. We are doing a tour tomorrow. And there will be more forms to review and sign.

My final call was to Brandon’s psychiatrist because he likes to be kept in the loop.

Brandon did great with his physical. He read the eye chart from about 30 feet out. He likes the blood pressure cuff so that was really easy. Josh and I were expecting the TB test to be a bit of a struggle, but we were wrong. He sat there like an angel while telling the nurse all about the American Elk at Cabelas. He was weighed (150 pounds) and his height was measured (5’ 9”). Brandon handled it like a champ with the promise of chicken nuggets from McDonalds.

I am suffering a bit of whiplash (metaphorically speaking) from the fast pace. I have dealt with the government program that is suppose to help with services for our son with the promise of more and more waitlists.

I am so thankful for my friend, Suzanne, who gave me the phone number for the state program that is now helping us. She gave me this contact information three weeks ago. I can hardly believe everything came together so quickly and seamlessly. I keep waiting for the other shoe to drop and someone to tell me it was all a big mistake.

But that is not going to happen! My son now has a plan for what happens after school! Woo Hoo!

Good News! A Follow Up

I am currently feeling all the good feels!!!! The young man I spoke with yesterday visited with Steve, Brandon and I this afternoon. I, of course, had my list of questions ready and was ready to convince him why Brandon needs these supports.

He arrived to our home right as Brandon’s bus was pulling up. Brandon got off the bus, ran across the front yard, lightly pushed the guy out of the way, and bounded into the house. He put his backpack down, took his coat off, and said “Lorie coming bowling.” Only after I responded that yes, she is coming today, did he allow me to introduce him to the young man.

We sat at our kitchen table and the young man had forms for us to sign and began telling us what is available and guiding us to agencies with good reputations. I finally stopped him and asked if Brandon is being approved. His response? “I am 99% certain he will be approved.”

I promptly burst into tears (I am an ugly crier…I did apologize) while Steve explained that we needed some good news. After I collected myself, we finished up and the young man left.

I called a day program that is close to our home. It provides transportation and supports several young adults with autism. There is a computer room and a kitchen area. They go into the community on a regular basis. And they have openings!

I checked in with Brandon’s school and we will be meeting to discuss his upcoming transition.

We are on cloud nine right now!

And Brandon is out bowling with Lorie.

What a wonderful day all around!

Finding the Positives

Yesterday was one of those days that just sucked the life out of me. Why is getting help for our son so hard?

Why don’t the people with the answers call back. They are the one who ultimately get to decide what supports my son gets after graduation in May. They control the purse strings. Why will they not respond to our emails?

As the day went on, I could feel the frustration rising up in me. And the tension. And the anxiety.

Then my phone rang. He was calling to schedule an interview/assessment with Brandon, Steve, and I. There may be funds available to help with day program options and more in home supports. He can help us!

I talked with the transition facilitator with Brandon’s school. She expressed to me that other parents are experiencing the same things we are – no calls back, emails not responded to. We are not alone!

I called Lorie’s supervisor and she called back within an hour. I tell her how much we love Lorie as a part of our autism village. I ask her questions. I make some requests. She answers my questions and will get back to me about our requests. And I believe her. She will get back to me. She heard me!

My frustration with the government employees, the ones who get to decide what supports my son gets in the future, is still there.

But there are others who fulfill a very important role in our lives. These folks reminded me that they can help us, that we are not alone, and that I am heard. I am so thankful for those calls.

Then, I went out with a friend for a much needed pedicure. Because pretty toes make everything better!