Swallowing the Bitter Pill: Part 1

When you have a child with differing abilities there are many “Pills” you must swallow..the diagnosis pill, the acceptance pill, the journey into special education pill. We have more pills to swallow than Carter! Some pills are a bit easier to swallow than others………….

We have known for quite some time that Zach will never be able to live independently.  He will require a lifetime of round the clock supervision and care.  When he was diagnosed with Ring 22 syndrome and autism almost seventeen years ago we had no idea what the future would hold and of course we remained hopeful that through love and intervention our son would make amazing strides.  We knew very little about Ring 22 syndrome and even the specialists we worked with had never had a patient with the syndrome.  I found a group on the internet and learned very quickly that as with most things there is a spectrum of how the syndrome manifests itself.  There are commonalities: Speech delay, Cognitive concerns, many individuals exhibit behaviors consistent with Autism Spectrum Disorder, behavioral concerns etc etc etc.  I did not however know about  autism regression and never anticipated to see some of the things that Zach was able to do fade away never to be seen again.  I never expected that he would take one step forward and then three steps back.  We never ever envisioned that his needs would be so significant.

That all sounds so incredibly negative …Zach has made amazing strides and he still surprises us everyday but the bottom line is that I have a soon to be 20 year old that can not do anything independently.  I have a soon to be 20 year old that needs assistance with all Activities of Daily Living, that is non-verbal, that has no sense of danger, that would leave a home and run into oncoming traffic, that could choke because he doesn’t eat properly, that still has sleeping difficulties, that has difficulty entertaining himself, that eats things he shouldn’t, that will get into his feces etc.   This is a very negative picture, but these are the cold hard facts.  Of course he has many wonderful qualities, he is sweet, funny, adorable, tenacious and I could go on and on ……….We love him in spite of and because of all of these things but it scares the absolute shit out of me that someone who does not know him and love him will not see past all of the tough stuff to get to the good stuff.  There are no words that can possibly describe the fear that overtakes me when I think of someone not seeing who Zach really is…but only seeing him as a difficult “client” in their care.

As the years passed and Zach did not make the progress we had hoped for, it became apparent that he was significantly impaired and would never be able to live independently.  In the early years we never really talked about what the living arrangements for him would be in the future.  When people would ask me “Do you think he will be able to live on his own and take care of himself?” I always answered “I don’t know, we will have to wait and see.”  but I knew….I knew it would never be.  Yet another “pill” to swallow.   We also came to the realization that we would not be able to provide the level of constant care that Zach will require as we age.

When he was little it seemed that these rough decisions were so far away yet in the blink of an eye here we are and the time has come to start the serious discussions of what we want for Zach’s future.  Some may think we are awful to think about moving Zach out or that we are selfish.  I suppose there is an element of selfishness, of course Mike and I are ready to live as empty nesters and to have a level of spontaneity in our lives that is afforded to most our age.  But I also feel we would be selfish to try and keep him here with aging, tired, worn out parents. Some may be thinking that his older sister should take him to live with her once we can no longer do it.  I will say vehemently that not only do I not expect her to do it, I don’t want her to do it.  Of course i want her to look out for him and make sure he is being taken care of and treated well. But just as we want what’s best for Zach, we want what’s best for Emily.   Our dream is that he be in a place where is is safe and happy and well taken-care of.  We feel that by starting now we can play an active roll in his adjustment to his new surroundings, take him on outings, bring him home for dinners, family events  and holidays.

Nothing about this decision is easy, it is by far the most difficult and heart wrenching and bitter pill we have to swallow.

PART 2: THE SEARCH IS ON…AND IT IS GOING TO BE A BATTLE.

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32 thoughts on “Swallowing the Bitter Pill: Part 1

  1. I hear you girl. I have the same issues with super samurai. Not as many, but he can’t live by himself. Nor can we afford for him to live in assisted living. I put my career(acting) on hold, and stay home with him. Love my dude to death, but it is scary to think about that, especially if he’s non verbal. You will find your solution, even if it means more sacrifice. I’ve learned with that, sometimes silver linings expose new things you never thought twice about. Good luck on the journey of solution.

  2. I love you. I love you. I love you. You ARE NOT selfish to consider placement for Zach. In fact, you are the opposite of selfish. You are doing what is best for you, your husband and your daughter which is in turn what is best for Zach. If you were sending him to some basement never to be heard from or seen again, then people could talk. But that’s not what we are talking about here. YOU need rest. YOU need solace knowing that your daughter will be able to live HER life and take care of Zach. This is no different than one having to put her spouse in a nursing home because of his dementia. Is it what she WANTS? NO! But it is what is best. The time you spend with Zach will be quality, happy time. Not tired, worn thin time. I am amazed by you and the bitter pill you must swallow. You will have more support than not. xoxoxo

  3. I’m not far behind you, and I feel your pain. But I also feel your resolve to make sure both of your children have a decent, happy life. God bless you, and I will keep you in my prayers as you search for an acceptable solution💗

  4. Hello! Just wanted to let you know I work for a company that provides services for people with I/DD diagnoses. Mosaic is a not-for-profit company affiliated with the Lutheran Church. We have agencies in several states and believe in supporting and assisting people in reaching their personal goals and dreams. Our public website is http://www.mosaicinfo.org.

    1. Trust your gut… you know what is best for your entire family.
      My Momma was in a group home until she passed in Oct. It was the BEST scenario any of us could have hoped for. We came and went, took her out, sat on the deck, she had her own bedroom, common living room open to dining area and full kitchen. 24 hr. aides who helped with bathing, dressing and they accepted veteran benefits which was 1/3 less expensive than assisted living.
      My 4 sisters and I were SO grateful to the owners.
      I have thought Many times how awesome it would be to offer this type of living to exactly kids like your son! Kinda like when they go off to college and you have to let go and let God 🙂
      Obviously the care would be very different and younger peeps need Much more supervision with activities esp. outdoors but… I believe it can be done. I am sending positive vibes your way!!!!!!
      With hope,
      from Cleveland Oh

  5. Thank you for sharing. This issue seems to be the unspoken shame of our community.
    My daughter lives in a residential facility/school.
    Like you,we knew she would need ongoing care and placement at some point but figured it would be when she had aged out of school.
    Unfortunately the diagnosis of severe bipolar disease on top of her other myriad of issues, CP, epilepsy, cognitive delays, autism, led to her having to leave us at age 15.
    Her maniac episodes require 1:1 and sometimes as much as 1:3 care.
    After her placement, we learned who our real friends were.
    Surprisingly enough it was more my friends with typical kids who seemed to understand then those with disabilities.
    Some of those with kids with disabilities have been down right cruel.
    “Well I’m glad it works for you but I could NEVER let so and so be cared for by strangers”.
    Yeah that doesn’t hurt. 😊
    But we have learned to deal with this new normal and remain very active in Molly’s life.
    It’s hard and at times down right gut wrenching, but I know we did what we had to keep my daughter safe.
    Good luck with your search!!

    1. I am so happy with the mostly positive responses. I assumed I would be “crucified” via the interwebs because of our choice. No one can possibly understand unless they live it. Thank you

  6. You’re such a strong and amazing mom! This is one of my biggest fears with the twins, that they’ll never be able to live independently.

    Prayers and positive vibes that you find the perfect new home for Zach and that he thrives and loves it like home ❤

  7. I am a Community Access worker for adults with disabilities. Two of my participants live in group homes. Depending, of course, on the quality of homes available, this could be a wonderful decision for Zach. Having “his own place,” or at least one where he’s not living with his parents, can make him feel respected. Having your own space (and I’m talking in the plural about all of you, including Zach) can make your times together easier and more fun. You will need extremely good communication with the residential providers, and lots of checking in. I will also strongly recommend some kind of one-on-one service, like Community Access, to get Zach out of segregated settings. The whole point of this waiver program is to integrate people into the larger community, to help people get to know Zach as an individual, and to build natural supports. If nothing else, it will be his CA worker’s job to get to know his strengths, his preferences, and his potential, and to serve as an advocate for him.

  8. God Bless you. You are NOT a bad parent, just a realistic one! My older sister is severely autistic, developmentally delayed, blind, with anxiety disorder. She aged out from residential school to a group home because there was no way my widowed mother, caring for a sick, elderly parent, could handle my sister’s violent meltdowns. Sis is happy at her home, shegoes out to dinner, goes to the mall, does work at aanimal shelters, goes bowling…none of which could have been done at home. Yes, we’ve had some bad staffers who should never have been hired. Yet we’ve had ones who treat the clients as if they were their own flesh and blood. I regularly visit her day program, attend monthly care meetings, and inspect her group home and she does overnight weekend visits with the family. Good luck and if you want to talk, I’m hanging out over at just a minute my cape is in the dryer!

  9. As a high school special education teacher, I helped many parents make life care decisions for their young adult children. Caring for a child does not mean caring for them in your home. You care for a child when you make arrangements in a safe nurturing environment.

    I learned so much about planning for special needs children from a wonderful family in my church. They had three sons. Their youngest two children moved away and had started careers while their eldest special needs son was still at home and they were approaching 50. They realized that it would be easier to have arrangements for Benny before they were forced to do this by death or disability. They found a great group home near their home and Benny loves the arrangements. He has someone with him who understands him and his needs. He has peers who also have special needs and most important activities.

    Just because Benny is in a group home does not mean that they are not his parents and that they do not love him. They can go pick him for church or family dinners. He comes home when his brothers fly in for holidays.

    People who do not have special needs children do not understand the amount of time and effort it takes to raise an adult special needs child. It is like having a 24 hour a day toddler that you cannot leave alone. You cannot run to the grocery store to get a loaf of bread without making plans to take them or get care arrangements. YES, GROUP HOMES ALLOW FOR PARENTS TO CARE BETTER FOR THEMSELF AND THEN CARE FOR THE CHILD.

  10. Kudos to you for this realization that Zach will be so much happier when you and your family rest and regroup. I put my 20 year old son with ASD in a group home oct 2013. It was a very difficult decision but necessary for many reasons, physically and emotionally. He is currently in a supported living scenario (the group homes too tough for comfortability) where he has a live in caregiver, his independence and self esteem. My husband and I cherish our visits so much more and were still young and vibrant enough to oversee all aspects of this transition. We’re fortunate to have a “Dream Team” of professionals….support coordinator, supported living coaches, behavior analyst and assistants, medical personnel and caring school staff to make this possible. I wish you much luck and support in this quest!! Keep writing!!

  11. My heart goes out to you. You are very brave for doing what is right for Both your kids.
    I worked with kids and adults with special needs for years. There are people out there who will love your son for who he is. Through the grace of God, they will see past the challenging moments with your son just as you do now.
    I also have an older sister with special needs. I will not go into how my family dynamics have played out here. The details are long. The pain is still very raw. Please believe me when I say you are blessing both your son and daughter with these decisions you are facing now.
    Be strong, be brave, hold tight. Prayers for your family.

  12. Please post part two soon. My son is 17 and nonverbal and will have to be watched. We can’t imagine not having him in our home, but we don’t stop aging and one day we’ll be gone. To not look ahead is not fair to him.

  13. When my son was younger, I thought I’d keep him with me until I die. As he’s gotten older, I’ve realize that isn’t the best thing for him or for me. He WANTS to be like his older brothers and move out. His older brother lives in an apartment with a few other guys. This is what my son wants. He wants to be as ‘normal’ as possible. The more I think about it, it seems to be the best option for all of us. We will see him frequently, but he needs that sense of independence.

  14. Michelle —

    We have a daughter (Laney, 9) who has the same Ring 22 and autism diagnosis as Zach. Very rare…as you know. We would love to connect with your family directly if you are interested. My email is stephenrmartin2@gmail.com. Hope to hear from you! Thanks for posting your blog.

    Stephen

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