My son on lock down: Hard for people with special needs

Posted by ihatediabetes @ihatediabetes, Mar 21 11:33pm

My son Michael is developmentally disabled. They closed his day program in MN on Tuesday. So he couldn’t go there eventhough he was dressed and ready to go. But Metro Mobility didn’t come. Then the group home doesn’t think I should take him in community. I don’t think I should take him in the community. So Michael is locked down and he doesn’t understand why. This is way worse for me to worry about Michael’s unhappiness because I can occupy myself but he doesn’t even understand why this is happening.

Hi @ihatediabetes, so good to hear from you. I can imagine that this is particularly hard on Michael when his routine is so drastically uprooted and he can't understand why. I'm tagging other parents of kids and adult children with special needs, like @alexisdewilde @mrsjoanie @aworriedmom @illinoismom @jennsprung and @5qdeletion @mcconnector, who may also be finding this time of social isolation, especially trying.

Ihatediabetes, how does Michael show his unhappiness? Is he sad, angry, quiet, acting out, or all of it?

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@colleenyoung

Hi @ihatediabetes, so good to hear from you. I can imagine that this is particularly hard on Michael when his routine is so drastically uprooted and he can't understand why. I'm tagging other parents of kids and adult children with special needs, like @alexisdewilde @mrsjoanie @aworriedmom @illinoismom @jennsprung and @5qdeletion @mcconnector, who may also be finding this time of social isolation, especially trying.

Ihatediabetes, how does Michael show his unhappiness? Is he sad, angry, quiet, acting out, or all of it?

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Michael is used to a routine. So when something happens that he doesn't expect he gets upset. Also when he has an expectation, like doing something fun, and it doesn't happen he tends to melt down. I'm hoping that he gets into a new routine of staying at home. The staff is trying to occupy him and another consumer with games, organizing, and stuff like that. Maybe Michael will eventually like the new routine. I am trying to set him up with zoom. There are organizations that serve people with disabilities that are setting up zoom so these individuals can meet up. People like Michael really rely on Special Olympics and similar programs to have a life worth living.

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@ihatediabetes

Michael is used to a routine. So when something happens that he doesn't expect he gets upset. Also when he has an expectation, like doing something fun, and it doesn't happen he tends to melt down. I'm hoping that he gets into a new routine of staying at home. The staff is trying to occupy him and another consumer with games, organizing, and stuff like that. Maybe Michael will eventually like the new routine. I am trying to set him up with zoom. There are organizations that serve people with disabilities that are setting up zoom so these individuals can meet up. People like Michael really rely on Special Olympics and similar programs to have a life worth living.

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Hi @ihatediabetes

I’m very sorry to hear your frustration, and please know that you aren’t alone in not knowing where to turn. My son has special needs as well and though he is at home with me, and he loves to be home, it’s not easy for him to be out of routine. I’ve been relying heavily on the following article to get us through this uncertain time. I know that it is written specifically with ASD in mind, but I think it speaks beyond the diagnosis. https://afirm.fpg.unc.edu/supporting-individuals-autism-through-uncertain-times
I have seen a few really good social stories that attempt to explain the Covid pandemic. Does he respond well to them?

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Hi, thank you for the reply. My son has genetic condition but I am told he is on the spectrum. I don't think Michael can understand what is a virus. He's at home visiting so I do feel better to see he's OK. I guess I was just shocked to see everything get shut down so suddenly, including his day program, Special Olympics, etc. Then I asked his doctor if Michael is high risk and the doctor said yes due to medical problems. So I was freaking out. But I feel better to see that Michael survived his first week on shut down. I can get him to state park to walk around. I think life is changing fast. My daughter is flying back from California to Minnesota on Tuesday. They are shelter in place in California. Then my siblings are going to set up a weekly extended family meeting on zoom. It's great to think we can gather as a family on zoom.

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@ihatediabetes

Hi, thank you for the reply. My son has genetic condition but I am told he is on the spectrum. I don't think Michael can understand what is a virus. He's at home visiting so I do feel better to see he's OK. I guess I was just shocked to see everything get shut down so suddenly, including his day program, Special Olympics, etc. Then I asked his doctor if Michael is high risk and the doctor said yes due to medical problems. So I was freaking out. But I feel better to see that Michael survived his first week on shut down. I can get him to state park to walk around. I think life is changing fast. My daughter is flying back from California to Minnesota on Tuesday. They are shelter in place in California. Then my siblings are going to set up a weekly extended family meeting on zoom. It's great to think we can gather as a family on zoom.

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I’m happy to hear your daughter is on the way home! We sensed things were bad, but we were absolutely taken aback by how quickly it escalated. It is very strange, unprecedented times for sure. My son has a genetic issue as well- there is no name for it so he also has a diagnosis of ASD. We are using a visual schedule daily to help set the pace for the day. It’s very helpful for both of my guys and I’m finding comfort in it as well. Is Michael verbal? Does he use PECS for communication? I’m attaching a photo of one of the social stories I’ve seen. If you haven’t used one before they are a great way to help people on the spectrum understand what’s going on. My son is a strong reader so we don’t use pictures anymore for visual schedules or social stories but we have in the past.

Up here (we are in Canada) they are recommending that anyone coming from an area where there are many cases (like Cali or New York) should self isolate for 14 days. Will your daughter be isolated when she returns? If Michael is high risk it must be a very stressful time for you!

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I am a social worker with DD folks and I emailed my teams from a self advocacy site a 8 page booklet that explains what is happening in plain language with pictures. Look on line for it. Also, most group homes should supplement with a schedule of game time, crafts, movement activities. Best of luck during these uncertain times!
Jennifer

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@jennsprung

I’m happy to hear your daughter is on the way home! We sensed things were bad, but we were absolutely taken aback by how quickly it escalated. It is very strange, unprecedented times for sure. My son has a genetic issue as well- there is no name for it so he also has a diagnosis of ASD. We are using a visual schedule daily to help set the pace for the day. It’s very helpful for both of my guys and I’m finding comfort in it as well. Is Michael verbal? Does he use PECS for communication? I’m attaching a photo of one of the social stories I’ve seen. If you haven’t used one before they are a great way to help people on the spectrum understand what’s going on. My son is a strong reader so we don’t use pictures anymore for visual schedules or social stories but we have in the past.

Up here (we are in Canada) they are recommending that anyone coming from an area where there are many cases (like Cali or New York) should self isolate for 14 days. Will your daughter be isolated when she returns? If Michael is high risk it must be a very stressful time for you!

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Hi, my daughter has been delayed coming back from California. She had 2 flights canceled and she's trying again tomorrow morning. I heard rumors that the government might shut down air traffic. So I hope she makes it. My son Michael doesn't really read but he can take an eye test. So he can recognize letters. He's really social because he has Williams Syndrome. I think he's getting used to his new routine. Staff took him by our house yesterday. And he seemed happy to see me and know that I am staying at home too. So he knows that it's everybody. I think it makes it easier to know that he's not being punished. I think kids and people with disabilities might blame themselves for what's happening because they don't understand virus. They are thinking this is one huge timeout.

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@ihatediabetes

Hi, my daughter has been delayed coming back from California. She had 2 flights canceled and she's trying again tomorrow morning. I heard rumors that the government might shut down air traffic. So I hope she makes it. My son Michael doesn't really read but he can take an eye test. So he can recognize letters. He's really social because he has Williams Syndrome. I think he's getting used to his new routine. Staff took him by our house yesterday. And he seemed happy to see me and know that I am staying at home too. So he knows that it's everybody. I think it makes it easier to know that he's not being punished. I think kids and people with disabilities might blame themselves for what's happening because they don't understand virus. They are thinking this is one huge timeout.

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I totally agree that it is confusing for people with disabilities. I’m currently working with a group of parents, educators and various other special interest parties trying to make sure that those with disabilities have access to information that is understandable and that they are given consideration and treated equitably.
It sounds like between you and his carers he is making out ok for now. That’s great to hear! Now if we can flatten this curve we hopefully can get back to “normal” soon! I’m sure it is going to take a while and it is a bit uncertain but fingers crossed!
So hoping your daughter makes it back without much more turmoil. It feels like everything is upside down right now for most people.

Best,

Jenn

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@emyliander I thought you might appreciate this discussion. How is your daughter doing?

@ihatediabetes and @jennsprung, how are you doing? And your kids?

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@ihatediabetes How is your son, Michael, doing now? It’s been a long, tough road for everyone and, especially, for you. I hope all is going well. Cyber hugs to you and Michael!

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