I have to be honest, I haven’t posted much lately because I haven’t had a whole lot of positive stuff to post about. I really struggle with posting the negative stuff because it makes for some awful reading material. I am an optimist and naturally, what I enjoy putting out there is positive stuff. It’s difficult to express some of the more unhappy things and the reality is, there is quite a bit of negative things.

We entered the world of adult services a year ago when Andy turned 18 and we are preparing ourselves as best as we can for the day Ethan turns 18 this August.

So to describe most accurately what we have for adult services is waitlists and appointments for consultations.  What we knew and relied on with children’s services are cancelled the day the boys turn 18. So respite weekends, some camps and social programs, the money to pay for workers, respite, camps and programming – all cancelled and the boys names get put on waitlists for similar services for adults. It is hard to get definitive dates for when they will come off the waitlists but I am told about 2 to 2 1/2 yrs and the supply of workers who feel up to the task of working with our adult boys is diminishing. We used to get handed phone numbers for the chance to work with our cute little guys when they were only 50 lbs.

We have had people come over for helping us with the crazy teenage behaviours that seem to elevate during what can be a turbulent time for typical teens let alone teenagers with severe developmental disabilities, sensory processing disorders, lack of communication skills and no independence for day to day life like bathing, eating, dressing, and just plain being in control of what they do. I can only imagine at this age, what it is like to not be able to just go out and do what you want to do on a Saturday but our guys are pretty trapped by their dependance on others for basic needs, communication and safety. And so our boys react with behaviours and no one is happy. On top of that the strategies I used for behaviours when they were children no longer work for my big adult boys.

We have an equally exacerbating issue of having two adults with such severe disability that when one of us parents is required to earn a living to put food on the table, the other is left 1 on 2 with adults who require 1 on 1 supervision. These guys outweigh me by a good 50 pounds and a few inches and I am 46 yrs old and they are 18 and 19 yrs old.

I don’t really know how to express it to the folks when they call or come to visit to see how things are going so that they can step in when I need help. Apparently there is a certain way to appear that will indicate crisis and I am not appearing that way. But I don’t know what that is. I don’t know what falling apart looks like. I fall apart inside not outside. I get stuck in the coping mechanisms rather than thriving. I have no motivation for anything and drag my feet all day. And this is kind of scary but I just don’t care anymore. Things that I should respond to and try to do something about, I just don’t care. I’m addicted to food as a soother of the frustration with meltdowns that occur at least a dozen times a day. I’m tired…. a lot.

So this is the situation that I am remiss about reporting on here on this blog that was once light hearted and cherished two very special boys. I love my boys. I can’t wait til I can see them truly as they are meant to be when we all get to heaven when the Lord returns. To hear their voices, to know their thoughts, to see them with their creator who knows them and loves them better than anyone. Until then, we struggle to be what they need us to be for them.

Ecclesiastes 3 1-15 says:

“For everything there is a season,
    a time for every activity under heaven.
A time to be born and a time to die.
    A time to plant and a time to harvest.
A time to kill and a time to heal.
    A time to tear down and a time to build up.
A time to cry and a time to laugh.
    A time to grieve and a time to dance.
A time to scatter stones and a time to gather stones.
    A time to embrace and a time to turn away.
A time to search and a time to quit searching.
    A time to keep and a time to throw away.
A time to tear and a time to mend.
    A time to be quiet and a time to speak.
A time to love and a time to hate.
    A time for war and a time for peace.

What do people really get for all their hard work? 10 I have seen the burden God has placed on us all. 11 Yet God has made everything beautiful for its own time. He has planted eternity in the human heart, but even so, people cannot see the whole scope of God’s work from beginning to end.12 So I concluded there is nothing better than to be happy and enjoy ourselves as long as we can. 13 And people should eat and drink and enjoy the fruits of their labor, for these are gifts from God.

14 And I know that whatever God does is final. Nothing can be added to it or taken from it. God’s purpose is that people should fear him. 15 What is happening now has happened before, and what will happen in the future has happened before, because God makes the same things happen over and over again.”

So in this I know that there is nothing I am experiencing that God does not see. All that inside stuff, He knows. He is a far better resource than the government for what I need and my trust is in Him through all these seasons.

  • Thanks for sharing, Janice. I can’t imagine what you and John deal with day in and day out. My heart aches for you.

  • Good Morning Janice: I stumbled across this website and wondered if you contact these people they might direct you to a place in St. Catharines. I wonder if Community Living here would be of some assistance if Autism Ontario is unable to do anything? Eventually you will need to look at a residence for the boys and considering long wait lists, the time may be now. I am happy to help you with referrals if you need assistance.

    Rygiel Supports for Community Living
    Suggest Update
    Presently, Rygiel Supports for Community Living supports 186 by providing full time residential services, respite services and some day supports.
    200-1550 Upper James
    Hamilton, ON, L9B 2L6
    Fax: 905-525-5933

    Ages served: 18 years and up
    Languages served: English
    Fees: None
    To be seen: Clients/families may self refer
    An individual (or his/her family) in need of service should make the need known to CONTACT Hamilton at 905-570-8888.
    Area Served: Hamilton

    • Yes, I am already set up with Community Living and Autism Ontario as well as DSO and ODSP and Bethesda for adult behaviour supports. Their support is quite limited. We are on the waitlist for group homes as well but that is about 18 yrs waitlist from what I understand. Thanks for the suggestions Elaine. I appreciate your help.

  • Jimmie is 16 and Derek is 14. After two years of mind-numbing paperwork Jimmie is on the waitlist. The waitlist that claims they will PAY an employer to give that employee an incentive to hire Jimmie.. But the waitlist is so long and the funds are so scarce it’s just a formality.

    On the other hand Derek is starting the long process now to get waitlisted. It makes more sense for him because his attention span is so bad he always needs a coach next to him.

    I solve that problem now by taking him to work with me. He does the. daily watering and I do the other stuff. It’s still hard not to worry what he would do with another coach besides me. I speak his language so effortlessly to to anyone else, he seems so alien.

    It’s such a full-time job just thinking and planning ahead. That’s what I love about your blog. You have that eternal perspective that is always our lifeline.

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