On 3/1/18, my autistic son Luke was placed in a group home. Luke is 25 years old and needed more support than his parents could sustain. I have shared past posts on my blog about Luke and his life. It is no small feat to navigate the Department of Social Services in matters of mental challenges and neurological disabilities.
Within the first three weeks of Luke’s move into his residential home, I noticed several problems related to lack of education among staff who were in charge of our son. By the end of April of this year, I was left with a feeling that measures may need to be taken to remove Luke from his current living situation, but the catch was I had a month-long trip to the east coast coming up. It was to visit my elderly parents and attend my youngest son’s graduation. The good news Luke and his dad were flying together to join me.
Luke did great on the flight and trip and returned to his group home May 10th. It was about that time I had a nightmare (not a joke) that woke me up with a vision of Luke hospitalized. I shook it off, but I was nervous of its meaning and hoped it was just my own anxiety playing tricks on me. It was not.
On May 17th disaster struck. Luke had a “behavior” which was the word used in an email and also in an incident report with no clear antecedent. The home decided after taking a few unsuccessful measures ( a bath, walk, and a medication) to call 911. I want to point out the home did not have a clear professional behavior plan in place by then as far as I knew although I was asking for it repeatedly. The police arrived and Luke escalated even more out of control. The police felt it best to call for an ambulance that transported Luke in four point restraints to the emergency room.
Struggling for 36 hours strapped to a gurney, Luke was eventually transferred to an involuntary psychiatric hospital. Although I was not home yet, I was getting updates from Luke’s father. I felt helpless, frightened, and quite frankly angry. After flying home, I went straight to the hospital. The unit was ready to release him. I met with his public defender who felt it was best to discharge him so that he would not be dragged through the legal system. She represented him not because Luke did anything wrong, but because a lawyer is put in place to protect his constitutional rights. This is when things got even more complicated…the state’s convoluted system would not allow release….. ( more to come ).
Today June 12, 2018 Luke was finally released from the hospital. If you want to come back for the crazy ride from May 17th – June 12, 2018, I will do a series on what happened and why the “system” caused so much turmoil. Perhaps Luke’s story can help others. Perhaps I will write to help myself , or perhaps Luke’s dilemma can bring about change in a system so wrecked. Whatever the reason, I will share and you can judge how hope for change could become a reality. God knows I hope.
For those of you coming back to read the story–please put a prayer in for our dear boy as he has been placed in a hotel by the state with care providers 24/7 except long weekends with his family due to staffing shortages. This is not ideal and I did not want this, but at least he is out of the hospital and can be outdoors to enjoy fresh air. WE all take that for granted don’t we? FRESH AIR.
alesiablogs 
Oh my God, Alesia, this is beyond a nightmare. My heart goes out to poor Luke, you, and his entire family. The truly frightening thing is that there don’t seem to be any ready solutions, and this is in a state that most of the world considers one of the more enlightened wrt social policy. It is devastating to think of all the families with adult children with any number of special needs who are desperate for secure and compassionate solutions for their children. My thoughts are with you.
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Jane, Yes! It is thought WA state is progressive and so far ahead, but on the contrary. It is painfully and woefully in trouble especially for those disabled after services in the school stop at age 21. I have spoken to so many people since flying home and tried to make sense of all this, but I will tell you–there seems no one with the right answers. It is a tragedy and I hope as I write more about it–the posts will paint a picture of what exactly happened. Can you believe I just went grocery shopping after being home 2 weeks from my almost month long trip on the east coast. On a happy note that trip was amazing and I met so many family members I have never met before. It was beyond extraordinary. To be continued about our precious Luke…You will not believe what transpired over the last few weeks dealing with his lockup in the hospital. I am still in shock.
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God be with you as you try to get the best for Luke. I cannot imagine how difficult this is, but you and Luke are in my prayers.
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Thank you Jayliene❤️
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I’d like to say “I don’t believe this, our system can’t be so screwed up!”. But I can’t say that, because I know that it is so screwed up!
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As a fellow RN-it just doesn’t make sense. Does it? Thank you for reading❤️
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this is so awful. i feel for both of you –
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I wish you could see how everyone calmly sits around discussing Luke while I am screaming inside. I wonder how people sleep at nighr.
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I have a friend whose son is starting to meet the system, as he gets older and bigger and less able to “contain” (nonverbal and autistic, prone to escapism and lashing out). It’s an untenable situation and astonishing how many families live under this kind of constant pressure with very little guidance from a system that only knows how to medicate or incarcerate. I’m sorry you’re going through this, but grateful that you are sharing your story. Best wishes to your family and to Luke.
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Michelle, you completely get it. Thank you. The state runs things off their regulations and what ever idiotic algorithms they put in place, but forget our children are humans and serious consideration should be put in place for parent involvement when clearly in my state that is not done. I will try to explain that in detail in another post soon.
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Alesia,
From the first day I met you, some 20 years ago, I knew you were a strong person. You have been through so many challenges in your life and have come through each even stronger! You are an example for me to follow. You have always been a good friend. I appreciate that!
However, what you have done for Luke is amazing! You fought for him and did not and will not give up. You have fought the system with intelligence and determination for your child. I SO admire that! If only all parents loved their children and fought for them as you have, the world would be a better place. You are awesome.
I will keep you, Luke and your family in my prayers. I will pray for you to have added strength to see this through.
Norma
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Norma, Thank you for your very kind words. Its a different kind of battle that thank God not all parents have to endure.
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I’m so sorry that your son (and you) are going through this. My heart is with you and I hope this will only get better for Luke. Hang in, friend. Hugs to you.
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Darlene, thank you. WA state has the “honor” of being 41st in the the worst social services in America for our intellectually disabled. It is hard to believe as others prosper around the vibrant Seattle area- our underserved are suffering along with their parents or significant others. As of this weekend- I am enjoying seeing my son outside of the hospital, but he is not settled into an apartment yet.
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I send you all positive thoughts and any prayers that might help. I’m so sorry to see that your state is listed as #41 in social services. We live in confusing times when our most innocent and needy citizens seem to be at the bottom of this country’s priorities. Never give up hope. Keep the faith. And keep fighting to make the change for your dear son.
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Dear Alesia, Unfortunately, I am familiar with what happens to special needs children all too well. And foster children as well,most who have been abused, neglected, and other things that no human being should have to endure. And yes, California must be near the bottom of that list as well for I have never seen so much abuse within the system. I have friends in Nevada with a young man like Luke, and they are going through similar things. And if it is not these things, it is bullying (yes, special needs children and young people are often severely bullied among other horrors that happen to them).
Having worked with them in various school districts for all these many years (and I am a mandated reporter, which most of you already know what that means), I can’t tell you how many times I have reported abuse, only to have the reports “shelved.” Schools are paid for the students being in school, so they cannot allow every report that comes through to go to the end. We read of teachers who are sexually exploiting children and young people daily. My God, we are given background checks in three different arenas, so how do these perverts manage to get through the system? And in group homes and various systems of incarceration, they continue to be abused, and the parents are abused as well, not being allowed to see their own children for long periods.
One thing that needs to be done is to not allow your children to be “labeled” with any form of special needs if at all possible. Put them into home schooling programs, or perhaps Montessori schools, but don’t allow these people to put labels on them unless their conditions are really severe like Alesia’s son because they will carry those labels for the rest of their lives. Even then, I hate to have labels put on children when they are growing up because it implies that there is nothing that can be done to help them and that is not true at all.
A lot of children are slow to read and write, and to learn, but it does not necessarily mean that they have severe problems. Children learn to read at different points and ages, and also the way they teach children today and the speed with which they are supposed to learn makes me truly wonder what they are actually trying to do. If I, a 76-year-old lady with two degrees, and many other certifications, etc. have a difficulty learning what the child is supposed to be learning, what is anyone expecting? I tutor a lot of children and adults now with special needs, and even the most supposedly violent of these can be dealt with in a humanistic way that benefits them. It isn’t just experience in working with the children and youth; it is loving them as human beings who deserve to be given a chance for happiness at whatever level they can achieve in life. I hope that in our lifetimes, we will see a change in the educational/therapy/etc. system so that every human being is valued for their unique gifts to the world. And we have so much to learn from them.
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Amen. Well said…
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If my good old memory serves me right, I believe there are some good videos of a woman who had two grown sons with severe autism, and she devised a way to teach them after she was so disgusted with the system. Her system has been highly successful, and I believe it is being used in some forward-thinking organizations. I believe she is from the Philippines. It is a really incredible method and she got her sons to be able to respond even though they were never able before to do more than make noises. You might find other videos now too since I was last on there. Good luck with this and I know you are the type of woman who will succeed because you are highly motivated and I can feel the love you have for your son. All of us are sacred on this earth.
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