Monthly Archives: December 2018

Stuck in Reverse

When you try your best but you don’t succeed

I literally have made a full-time job out of finding the right placement with Shane, building a team of professionals and working out details with the local school. We’ve worked diligently, spending hours online and on the phone. Completing applications only to be turned down. IQ too high. IQ too low. Behaviors too severe. Behaviors not severe enough. In spite of all of that, I feel like we’re failing. When you try your best but you don’t succeed.

When you get what you want but not what you need

With only one week left before he’s scheduled to come home, Shane continues to struggle. I’m starting to feel like having him home for Christmas and then to Tennessee in January might not happen as he doesn’t seem to be as stable as we thought. We’ve made travel arrangements for next week and desperately want him home. But, is that what he needs? Is he ready to make yet another transition? Do I put our wants above his needs? Am I being selfish? When you get what you want but not what you need.

When you feel so tired but you can’t sleep 

Ever been so exhausted that you feel like 24 hours of sleep would do you good, but you can only sleep for five or six at a time never feeling rested? I literally take melatonin, Xanax, Advil PM and Prazosin daily and haven’t slept more than a few restless hours per night in months. Thoughts race through my head 24/7, seldom at peace. As bad as it is for me, it’s worse for Shane. He’s away from home and in a strange place. He’s scared to sleep alone…even at home. He has nightmares there and gets up at 3:00 a.m. That makes for a very long day. If you know anything about bipolar disorder, you know that lack of sleep only makes things worse. So, while they’re trying to adjust his medication to stabilize his bipolar, he’s not able to sleep which only intensifies the situation. When you feel so tired but you can’t sleep.

When the tears come streaming down your face 

This. Daily. All of us. Me, Scott and our boy. We have Skype calls every Wednesday for about thirty minutes. Yesterday, he looked much sadder and more defeated than we’ve seen him since he’s been in Utah. It takes all I have to put on the brave, happy face. But, I know that he would only be more upset if he sees sadness in us. I’m heartbroken. Scott is heartbroken. Shane is heartbroken. We’re all exhausted and sad to the core. He wants to come home so badly, although he understands why he’s there (as much as he can). We want him home. I want to be a mom ALL the time. I’m not ready to relinquish my daily responsibilities to a boarding school for years to come. But, I know that if he had cancer, I would have to rely on the “professionals” for treatment. I view mental illness, autism and Shane’s unique set of circumstances the same way. It’s out of our scope of abilities. We’ve been asking for help. For years. And, we’ve gotten it along the way. Lots of help from many people. Not so much from others who should’ve been able to help and didn’t. Still, we flail with no end in sight. When the tears come streaming down your face. Still. After all these years.

Stuck in reverse.

The System is Broken

With Shane in Utah, we’ve been scrambling to put together a plan to begin after his discharge on December 20. We are thrilled that he’ll get to be home for Christmas provided all continues to go well.

We had a meeting with the team at our local school last Wednesday. They put together an amended IEP (Individualized Education Program) which is a document that dictates accommodations that must be made for a student with a disability. After Shane only being allowed to attend school for 2.5 hours per day since August, the IEP team agreed that they cannot adequately provide him with the services he needs locally and they recommended placement outside of the district in a more restrictive environment. With that written into the IEP, it means the district is responsible for the tuition at a facility that can accommodate him and his needs. After all, it’s their recommendation.

We knew that the IEP team was leaning toward an outside placement as it had been discussed at prior meetings and had already hired an educational consultant to find a program for Shane. After many applications, inquiries and hours of research, he was accepted into the program at King’s Daughters in Tennessee. There are zero programs in the Carolinas to meet his needs and those of others like him. I visited King’s Daughters on Tuesday. It’s an amazing program for kids on the spectrum and those with developmental and intellectual disabilities. We are excited about the opportunities for him with regard to his continuing care and education. We felt relief knowing we’d found a promising solution.

Yesterday, we were informed that the local district is only willing to provide the portion of costs attributed to the day school which is $32,700. The total tuition for the residential program on an annual basis is $72,700. Yes, it’s an exorbitant amount of money and out of reach for most families. Believe it or not, most schools that can service a child with Shane’s needs range from $96,000-$150,000 per year so $72,000 seems like a bargain.

So, that presents an interesting quandary. The district has said they CAN’T provide Shane with an adequate education and that we should seek placement outside of the district. After hiring an educational consultant, we found a program that will meet his needs as directed by the district. Now, the district only wants to pay less than half after we were told they would pay for placement. I have many questions:

1) How does the district think he can attend the day program without living there? It’s 6.5 hours from home. The nature of the programs is designed to educate 24/7.

2) With the median income in Lancaster County being $46,800, how many families are there in need of these services that can afford to take the district’s contribution of $32,700 and write a check for the additional $40,000 annually when they are refusing services locally?

3) Is their recommendation simply a way of ridding the school district of the responsibility to provide a child with disabilities access to an education hoping that we’ll just settle for homeschooling him?

4) Other districts are funding 100% of the tuition at King’s Daughters for students so why can’t our district?

We’ve never sought public education for him. He was in private school until age 9 and homeschooled with tutors for the last three years. As a result of the determination of the district, we’ve contacted an attorney and will fight for our child’s education and that of other families of children with special needs. It’s a vicious cycle. The child doesn’t receive an adequate education, has no way of even remotely supporting themselves independently and ends up on public support as an adult.

With the loss of an education comes the loss of self-determination and the sense of fulfillment and purpose setting them up for a lifelong struggle, poverty and depression. We owe our children more. We owe families more. And, we owe society and the future generations more.

Recent studies have shown that the incidence of autism is now one in forty. It was estimated at one in 58 just two years ago. Picture that. One in forty kids is on the autism spectrum. This is an epidemic. The world must slow down and take a look at the long-term effects of not serving this community to the maximum benefit. The system is broken. We must fix it.

Positive…That the Next Few Months are Going to Suck

Someone told me tonight that I’m too negative on Facebook and need to be more positive. I feel like I post plenty of positive things, but I’m at a place in my life that seems to be one shit storm after another. I’m angry at the universe. And, while it’s peachy to pretend life is roses, it’s not always and I am honest to a fault. Yes, I have plenty to be thankful for. But, I also have plenty to be sad about as do many people.

I am the mom of a beautiful 12 year old boy who is 3,000 miles away from home receiving treatment for mental illness. They don’t accept insurance. It’s $12,750 every two weeks. He’s been there three weeks and will be there for two more. He will get to come home for Christmas, then will be leaving again for a therapeutic boarding school in Tennessee on January 2. It is expected that he will finish out his education there. Six long years away from home. Struggling without his mom to gently rub his hair while he falls asleep. Or his dad to play video games and tell silly stories. Or to read a bedtime story to him. Or to watch cat videos with. No kisses daily. No hearing his laughter except during our once per week phone call.

Being in a situation where you abruptly feel like you will NEVER get to be the traditional parent again is heartbreaking. But, we’ve tried so hard to set him up for success at home and in the local school. It’s not going to work. He needs more intensive treatment to teach him to learn to navigate a world not built for him. I’m not ready to tell my boy goodbye and slip into the routine of seeing him once per month with three week-long breaks at home throughout the year. It’s like sending a kid away for college except that you have time to prepare for college because you know it’s coming. We are not prepared. It is not what we’ve envisioned for our family and not remotely what we’ve hoped for. I’m sad. I feel like I’m losing my boy and fear that we will lose the love and close relationship we’ve shared for years. He’s sad, but understands that he needs help. I’m angry.

I take plenty of joy in the beautiful things in my life. And, everyday, go out of my way to perform a good deed to spread kindness. Sometimes, I do this for selfish reasons because my heart is breaking and the act of kindness mends it if only for a minute. But, it’d be nice for kindness to come our way during times of heartache, too. It seldom does. Maybe it’s because we put up a strong united front. We have a close knit family and for that I am beyond grateful.

I don’t expect people to know what’s going on and reach out to us. There are a few close friends who are aware of what’s really going on. So, forgive me for being negative. Or don’t. Feel free to unfollow or unfriend me. Or don’t. I’m not going to apologize. Sharing is my therapy. And, it raises awareness for autism, mental health, healthcare and public education.

If you or someone you know share the same struggles, reach out. We can be negative together. And share a bottle of wine or ten.