The day I chose to let them both go!!

Over two years has passed, since our son’s name was placed on an urgent wait list for a residential placement. That was in July 2015. It was the day after I had been diagnosed with breast cancer where I was instantly jolted into reality with my health, and my immediate thoughts of what would happen to our son if I couldn’t care for him.

I made a phone call to an agency that put me in touch with the right people through DSO (Developmental Services Ontario) on July 14th, 2015. This was the biggest push out of my comfort zone that I had ever experienced, or was it simply myself that pushed me out of that comfort place. I don’t know. But I knew it had to happen. Deep down not just because of my health crisis, but I had seen it coming that our son needed changes and that it was time.

 

Kyle and Dad (his Grandpapa) being silly together, back in 2002!!

 

It was one of those things that I thought about a lot since our son had been diagnosed at age 3, back in 1993. The thought of him having to move away from us one day. I had never wanted him to leave us. I wanted to keep him safe under our roof forever. My husband had the same thoughts about this as I did.

For us, not trusting others to care for our son was deeply rooted in an earlier incident that had happened to our daughter as a baby that had turned our lives upside-down in that moment. Then we found ourselves with having to raise a son who had autism. Everything got amplified with him because he couldn’t communicate like other children. How would he tell us if someone mistreated him or hurt him? He couldn’t. How could he ever tell us if anything was wrong? He couldn’t. How could he relay to us if he wasn’t happy and why? He couldn’t. Would he make himself understood? We couldn’t know that either for sure. Our fears were real, for so long. We had no choice with time but to face our fears and the mistrust issues, and that happened over and over during all those decades. We were brought to experiences with different people for us to learn to trust others to care for him. There were many opportunities and different scenarios that came our way. All to help us work through these issues. Isn’t that always the way when there’s something we all have to learn, life sends us what is needed to learn from. We were brought to experiences where we learned how to trust our gut feelings, and had to learn how to speak up where it was needed. It tested us, we ran into obstacles, but we did it and we grew from those experiences. With time it became somewhat easier. But to this day I stay on alert for what I might be sensing, for what my gut is trying to tell me. Our son often needs a voice, he needs people to advocate on his behalf. It’s been the only way to work through this, and that has allowed us to be able to let him go a little more over the years and to trust a little more.

I sense that probably many other parents of special needs children or adult children have similar feelings and thoughts as we have had about being able to trust others to care for our special needs children like we have. I believe that it may have a big part to play about why many of us are having a hard time to let go and allow them to move on when and if it’s possible. This is one tiny aspect of many that seem so complex with many of our kids. The decisions we have to make, each unique with their own set of circumstances for our child. There is no one-size fits all with any of this.

On May 19th I received a call from our case worker at urgent response. I could tell by the tone of her voice that was very soft and kind of hesitant that this was the call we had waited for. I was feeling energetic, and willing to hear what she had to tell me.

This indeed was THE CALL.

A residential placement had indeed become available and she had called to ask us to seriously consider it. I sensed that she was waiting for me to start crying or get emotional, but instead I felt empowered that day, ready to explore this new possibility.

When our son’s name was placed on this wait list, we were told that we could have up to 3 different placement offers to choose from or decline. If one place became available, we could visit and decide. If we didn’t like it, we could wait for choice #2 to come. But when the call came that day, it was a different story. This was going to be the only offer we would have from them I was told. If we declined, his name would be removed from the urgent wait list and he would return on the long, wait-forever probably kind of a list as I call it. I was not very happy. I don’t like when I’m told one thing, then out of nowhere it’s a different story. I knew enough that my thoughts swirling around in my head once again had to put it aside to be dealt with separately. This was my inner battle to sort out. I really didn’t want to jinx this opportunity for our son because of how I felt. I forged ahead with the possibility, not allowing what I had been told to derail me.

 

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During the weeks that followed, Dad’s health was declining faster than ever. It was becoming worrisome. I was afraid he would fall because he was so frail and weak. He wasn’t getting the medical help and answers that he desperately needed. No one in the medical system had really been able to help him or help make a difference with his health all these months. There hadn’t been any solution to his insane level of pain. I saw how hard this was for Mom. My siblings and I and even some of our spouses, even grandkids were all helping where we could to help keep Dad at home like he had always wanted. During all this time, my husband and I were in the midst of also planning a “Special / Golden Birthday Party” for our daughter that she had asked for this year. I decided to take a weekend away to pull the plug on all these hectic events that had swirled all around me, and I went away to a 2.5 day silent retreat. Heavenly!! I desperately needed this quiet time for myself to recharge my tired soul. Upon my return there had been an incidence that had to be dealt with for our son that I will share another day, because I feel it needs to be talked about, because I sense it may be happening more often than we think. That issue felt huge on it’s own to deal with, and it was one more thing to add to all that was already taking place at the same time.

 

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After finding out about the residential placement, the residential home agency wanted our son to go and spend a 5 hour visit, and stay for one overnight after that first visit. This way we could see if this might be a good match for him or not. That took several weeks for them to get those visits organized.

 

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During that time Dad was rushed to the hospital on the evening of Friday, June 23rd. Our daughter’s birthday party was planned to take place on the Sunday, less than 2 days later. We had invited 75 people and over 50 had confirmed they were coming. I’ll write about this later. Our son went for his 5 hour visit at the residential home on June 27th a few days after Dad was hospitalized. He was very comfortable at the residence. He was very happy to see me when I came through the door. That was a huge relief to see how content he really seemed to be there.

On July 11th Dad arrived at the hospice from the hospital. It was that same evening that our son was going for his overnight stay at the residential home. There was a tremendous amount of emotions for me to process all at once. I knew that Dad was arriving at hospice to spend his last days there. He was dying. My son was going to an overnight stay, and possibly the next step for him was going to be for him to leave home. It was all happening at the same time. I couldn’t even think straight let alone process this like I would have liked.

 

It was all there, weighing so heavy in my heart.

 

I drove our son to the residential home that evening and had to pick him up the next morning. I sent Mom and my siblings home to get a good night’s sleep in their beds while I stayed with Dad.

 

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That night turned out to be the night that Dad had experienced the most pain and discomfort ever. He barely slept, because every few minutes he was in so much pain, needing water, needing to be made comfortable. It just wasn’t happening and I felt tortured not being able to take his pain away, or make him comfortable.

 

It was the most difficult thing to experience with him, yet

it was a most sacred time 

to be with him as he approached the end of his life.

 

 

I got no sleep that night, but in the grand scheme of things, I was there for Dad and that was way more precious to have more time with him than to attempt sleep. I wasn’t even able to think about our son at the residential home that night. Dad was keeping me distracted. He was helping me to get through this time with my son in some way.

 

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When I picked our son up at 10 am the next morning, he was one happy camper. Sitting on the sofa watching a movie on his portable DVD player, just laughing and enjoying himself. He was sitting there with his luggage next to him, ready to come home. He jumped up and came running to give me a big joyful hug as soon as I walked in the door. That confirmed to me once again, that he was very comfortable and happy there. We drove back home, he was energized and ready for this new day I was emotionally and physical exhausted.

I had made the agency aware a few weeks before that, that Dad was dying. Hoping that sharing this with them would buy us time from having to make a decision for our son right away. I didn’t want to have to make such a big decision for our son when I couldn’t even think clearly. But they told me that they were being pressured by the Ministry to get the residential placement spot filled ASAP. Where was this coming from? It had taken almost 2 years for us to get an answer back from the Ministry. I was not impressed. After all these years of waiting, that just a few more weeks would make such a huge difference if they don’t fill the spot right away? This was yet another really frustrating issue that I knew belonged to me because I wasn’t going to convince them or anyone otherwise. That would have to get sorted out during my spare time. I was feeling pressured to bring our son for visits at the home, and to make a decision about whether we accepted the placement or not, all at the same time that I was about to lose my father. Dad was dying and I wanted to scream at them, didn’t you ever have a love one dying, and were you forced to do anything remotely close to what you are asking us to do? But I didn’t say anything. I knew it was a waste of time. I didn’t have time to get all tangled up in a knot over this. I eventually realized that it wasn’t those people telling me this, it was really the government system. Someone sitting in a far-away office that was making the decisions and pushing them, and someone was probably pushing that person so they had to keep the pushing going down the line to keep pushing till they got to us. Systems really don’t have a heart. They aren’t human. Systems don’t understand or care about the human aspect of people’s lives. They have a job to do, and they are focused on getting it done, on their schedule, when they are ready. It left me quite unimpressed, and I had to deal with the stuff that was floating to the surface for me around that too.

During that time of our son going for visits at the residence, there was at least twice that I saw what I was doing. I was putting a halt to this whole thing, this possible move. It was like I was trying to put a stick in the spokes of the turning wheel. I was coming up with a few things that I didn’t want for our son that was in that placement. I was looking for things that I didn’t like. I saw what I was doing, so I had to do a lot of self-talk and praying and ask for outside help from someone to help me regain balance with the situation. I didn’t want to sabotage anything, yet I wanted to be very clear about this decision and if it really wasn’t the best for our son I wanted to be able to know that. Today, I can say that I’m incredibly proud and grateful of how I handled it all in the end. I could have easily destroyed and put a complete stop to this opportunity for him. Instead I chose to look at all that was showing up for me that I didn’t like and I worked my way through many layers of that.

 

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On the morning of July 14th at 5:10 am, Dad passed away. It was a Friday morning, so my husband was off work that day and was at home with our son. After leaving the hospice, I can’t remember what I did. I probably went to Mom’s with my siblings. That part is blank in my mind now. I remember getting back home after 11 am. I knew that this was the day I had to make the call. My husband and I had to give them our final decision for the offer of a residential placement for our son. We had barely had any time together for the past three weeks let alone talk about any of this. Dad had been hospitalized and I was gone to be with him a lot of that time. That morning we talked about the visits our son and how it had went, and how we felt about this move. This was summertime vacation for government people and I didn’t want to have to drag this on any longer than it had to, plus they wanted a decision ASAP, so we had to be ready. Even though there were a few things that didn’t feel were perfect about this residential placement for him, we both felt we had to accept, give it a try, and give it a chance. It felt like the right next step to take even if it wasn’t perfect. On that same day, I called and said ‘yes we are accepting the placement for Kyle!!’

 

On July 14th, the same day that I let go of Dad, 

I also made a decision to let go of my son.

 

With Dad, I had no choice but to let him go that day. But with our son I did have a choice, but I chose to not give myself the option of keeping him safe at home. Instead I chose to let him go fly his wings too, but in a different way than Dad. I couldn’t believe that I was able to choose “letting go” of both of them at the same time. These two men, whom had influenced my life the most, ever. I felt tremendous emptiness in that letting go, in the loss, but could I also feel so much more freedom and that felt liberating even while mixed with so many emotions of grief and loss.

 

 

The two most influential men in my life, and how I made

a conscious choice to let them both go on that same day!!

 

It was that following week that I realized that it took 2 years to the same day, from the time our son’s name was put on an urgent response wait list to the day that we would accept a placement for him. For those that may not see the full picture, this wasn’t just the regular wait list our son was on, this was an urgent wait list for people who need services or placement ASAP. I still cannot wrap my head around how, or why it takes so incredibly long. With that said, I am incredibly grateful that we are where we are where we are today. My heart truly goes out to all those people and their families that stay on wait lists waiting for their opportunity to come up.

This week I wrote a blog post titled “Letting go of a son!!“. I have been surprised but also so pleased to see the response, over 1,130 people have come to my website to read the blog post. It tells me that there is a need for more sharing on this topic, that people are curious. Since then I have had several people contact me, or talk to me about their own decision that will need to be made for their child or adult child or who are in the process like we have been of having their own child transition or waiting for the government to find a residential placement for them. It breaks my heart in so many ways. I get the parents grief and tortured feelings and emotions. We have been there, we are there. We held off for decades putting his name on a wait list until we were faced with a crisis. It’s not easy. It’s really not easy. But from what I see now from our own personal experience, is that it’s probably harder not putting their name on a list and continuing to think about it and then remaining paralyzed in that process for decades. Knowing what I know now, looking back if we had been able to put his name on a wait list years ago, it would have freed us maybe a little more and maybe even given us time to explore more options for him without the crisis to bring us there. I wish we had been more courageous. With our son, what I have seen these last weeks where he’s been able to go to the residential home a few days a week, to now beginning 5 days a week starting this week, I realize that “he’s going to be ok… and we are going to be ok.” The biggest step has been taken I believe.

He’s only been gone 4 days this week. I began having a sore throat and feeling under the weather at the same time we were getting ready to drive him to the residence this week. My body was reacting to letting go I think. I was busy the first few days this week so that kept my mind occupied, but for the moment I’m experiencing a bit of a sense of loss. I was struggling to put one foot in front of the other. Then I realized, I don’t have to take care of him when he’s not at home, this can be time where I do things for myself. It’s going to take a bit of transitioning time for me to learn how to change gears after being in a full-time stay-at-home mom for the last almost 30 years.

 

He’s going to be ok… we’re going to be ok!! 

 

Please do share your experiences with us. We are all learning in this together. Thank you!!

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Comments

  1. Does your daughter still remember the Golden/Special party?

    I hope she doesn’t remember the experience which made you mistrust.

    Good luck with changing gears and being an artist and spirit.

    Choosing to let go is so so powerful.
    Adelaide Dupont recently posted..#autistichistorymonth Astrology; correlation between genius and insanity [2001]My Profile

  2. Hi Suzanne! It is wonderful to read how you put everything together and saw the synchronicity of the events leading up to your decision. It takes tremendous trust and courage to let them both go while you were under so much pressure! xoxo

  3. My dear Suzanne,
    What wonderful words you have written. You have had to let go of two wonderful people at the same time, your dad and your son.
    What a hard and incredible position that God put you in. You have managed to accept both hard decisions that you were given. I don’t know if I could have handled it as well as you.
    Now you will have time to paint some more beautiful paintings and to write some more and to just relax. You will also have more time to do things with Gary. You will also just have time to just relax and do nothing.
    I love you all.

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