Life is Sain

Wow!!! It’s been a long time since I’ve filled everyone in. I cannot express how wonderful life has been. I also cant believe it will be 3 years that my boy has been out of the home in June. I just cant believe it. Some days it feels like yesterday and some days it feels like it’s been a decade. My heart breaks missing him. However, as I have said a million times, I know this is what is best for him. I finally feel okay with “matter of factly” stating, it’s also what is best for me without too much guilt.

 

So where are we?

Preston is doing way better than I ever imagined. I’ll never know 100% because I only know what they tell me, and how he looks and acts. As his mom, I know things aren’t perfect, but life isn’t. I know nobody can care for my baby the way I can, but I also know he needs to learn to live without me. He needs to learn to communicate to others and not just mom. It’s working. He is maturing, thriving, and growing like a weed. His biggest issues are with any slight changes or variation in his routine. The facility he resides in has been open for 55 years. The director of the program told me that in his 30 years of working in the field, he has never seen a child that needed such rigid and consistent routines. Unfortunately in this field, direct care workers come and go more than Michigan seasons change. This is when he struggles the most. Which is very understandable. Different people do things a different way. Not to mention them getting to know Preston and how he communicates. It’s like a baby who cannot talk and only the parents know what the different pitches of cries mean. It’s the same with P and he gets very frustrated. Even the routine of showering can be annoying and frustrating to him. If he first takes his left sock and shoe off and someone else tries the right side instead, it can send him into a fit. I’m not sure if he will ever be able to adjust and fluctuate in these ways, but I hope so. Other than those “typical” autistic traits, he’s good.

He’s doing so well that it is time for him to go into a “stepdown program”, which I described in my previous blog. The problem in this actually coming to fruition is frustrating. So let me TRY and simplify this:

Originally I was told that home “G” was not a good fit for P because he needed a more restrictive type environment when he left the Great Lakes Center for Autism. So he went to where he is now, at Wedgwood. Now it’s time to go to the stepdown home “G”, but I was told, no he needs to go to home “H” so I went and visited and fell in love with it. The pros are that he stays in the same school district and area, which is amazing. So I get the ball rolling and I adjust my emotions to place him there in Grand Rapids. Only to hear months later that it is not a good placement because it is temporary placement. Like no more than 6 months. So I had to decide if I thought P coming home was a good option. That was tough, because of course I want him home. He will be 16 soon and only has 1 year and 9 months before he can be placed in a group home for permanent residency. I do not feel that psychologically bringing him home then making him go into a group home is a good “move”. So I decided to keep him in residential for the rest of his life. OUCH. Typing that brought immediate tears. I hate autism.

Anyways, so now I am told by the state that the better fit would be home “G” and it is the place he needs to go. Now I’m upset, it means another move across the state. He will have to change schools. UGH! I LOVE his school. He LOVES his school and teachers and bus drivers, etc. However, I don’t have an option. So I mentally prepare for the next journey. When BOOM… another roadblock…. Supposedly home “G” doesn’t have enough clients. P would be the only one there and it’s not financially feasible to keep the home open with only one client. Of course I understand this, but I’m frustrated.

Once again… money is the root of our problems (and other family’s). The need is there for these homes to be open, but the state can’t/won’t pay for treatment. So it is possibly closing.

Back to square one. Preston has graduated and has no place to go. I don’t know what to do next. I’m waiting to hear back from many people who are very sick of my voicemails. I know why they aren’t returning my calls, because they don’t know what to do or say. In the meantime my son who deserves freedom is still in “lockdown” because the state has no answers.

So that’s where we are. It’s annoying as heck, but I must have patience and faith. As always.

I know things could be worse, I am truly blessed.

Speaking of blessed….. how about we talk about me for a minute?  Emotionally I am fantastic. Besides missing my son, and worrying about him. I am great. I also realize that autism or not, we all worry about our kids forever, mine is just a different kind of worry. I’m accepting it. I have been thriving myself. I’m almost done with school, I recently got hired as a preschool teacher and my goals have FINALLY been determined. I am opening a group home. I’m seriously excited for the next chapter. I’m dating…..nothing serious but having fun. I know in my heart a true relationship will happen when it’s supposed to. I do want a real loving relationship, but for whatever reason…. I’m meant to be alone for now. I’ve been flying solo my whole life minus the short lived marriage I had. Beyond that I’ve truly only had one other relationship…. But we were young. I still feel like that was a marriage too. Lol God bless both of these men for showing me real love. I know it exists. I know I will find it again or at least that’s what I tell myself. In the meantime, I am having fun with my friends and family and being quite selfish. I don’t care. I deserve it and I am enjoying doing whatever I want when I want. I’m looking forward to working on Autism on the Seas in April. I’ll be going on a cruise working with children with autism. I’m working with little ones in the school setting. I’m trying to give my son an appropriate setting and future for him to thrive, and I’m overall the happiest I’ve been in a VERY long time. Thank you all for helping me in my journey. It’s not over, but I’m seeing the light at the end of the long struggle. I can’t believe where we are now. I couldn’t have done it without you. I love you and I thank you. I’ll keep you posted when I find a placement for my boogie boo…. Until then….. the InSain Asylum is actually….. sane.

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Who would of thunk it…. Xoxo

PEACE LOVE HEALTH AND HAPPINESS!

Lisa and Preston

 

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