Inclusive Gratitude

What’s not to love about the concept of gratitude. It gives us balance in life. It makes us appreciate the people and things and creation that surrounds us. It helps us through hard times remembering all we have to be grateful for and certainly most of us have so much to be grateful for.

For me, and maybe other parents of disabled kiddos, it can throw me off balance. Sometimes, when I’m out with my autistic girlie for instance, I am so grateful that people smile at her instead of scowling or frowning or worse laughing. Grateful when they “allow” her to sit next to them or engage in conversation with her even when it may make them uncomfortable.

I was grateful for those who would touch  or bend down close to my Shannon to talk to her in her wheelchair knowing they might not get a response rather than simply ignoring her or worse curving their path around her as if she was contagious. 

I’m grateful when a server actually addresses my disabled kiddos rather than talking to me and ignoring them. I’m grateful when they recognize their abilities or lack of abilities doesn’t make them a child and speak to them respectfully adult to adult as well as giving them an adult menu rather than a child’s menu.

I’m grateful for general education teachers who “let” my girl take a dance or ceramics class like any other high school student. I’ve been grateful for the times any general education student made any effort whatsoever to contact my kiddos outside of school and can count the number of times that has happened on one hand. 

I find myself grateful for any number of things those who parent neuro-typical kiddos would never consider something for which they should be grateful. Its a given, routine for them, but for us its exceptional.

When I find myself grateful for the smallest kindness directed towards my kids I get angry with myself. I feel like I’ve done them a disservice by adding to the consensus that they are “lucky” to be allowed amongst those of us who are “normal”.  Perhaps it’s because when I grew up we quite literally locked a good majority of those with intellectual disabilities away so we wouldn’t have to see them and  be “disturbed” by them, a practice less common but certainly not unheard of still today.

True integration in all ways should be expected, but how will that happen when even I still look at my kids and think how fortunate they are to be “allowed” to navigate the world like everyone else. How about the fact that others should be grateful they have a chance to experience my kids. Perhaps they are the ones who should be thankful.

I need to work on expecting acceptance rather than being surprised by it. I need to acknowledge that all of us belong – regardless of our differences, any of our differences no matter how uncomfortable it makes some people, they have a right to be seen and experience all that everyone else has a access to. Whether due to race, ethnicity, religion, gender or any disabilities, being uncomfortable is a necessary part of the process of inclusion.

Advertisements

Give me a Break from Winter Break

Halfway – we’re halfway through our winter break. It’s been exhausting already. Callie has been thoroughly demanding. Today was promised to be a day at the indoor amusement park. I knew it would be unbearably busy there but there really was no getting round making a trip there at some point over break.

Most moms who have toddlers or young children are more than familiar with having a child right outside the bathroom door if not in the bathroom while you attempt to get yourself ready for the day. I’ve had toddlers or kiddos in need of my attention in my house for 38 years now. It’s getting old. I’m getting old. I’m especially getting tired.

So outside the bathroom door this AM I had this going on.

Not only does my girl sit there staring at me. If she can get in my way or ask a question, the same question already asked and answered dozens of times, she will do that as well. I can’t quite explain, if you haven’t experienced it, what it’s like to have an adult underfoot but use your imagination and now make it a hundred times more annoying and you’re closer to how annoying it really is.

By the time we got in the car to come back home my nerves were gone but the day wasn’t even half over. On the way home I gave in to drive-through food and tried to peacefully eat my “meal” in the parking lot while she peppered me with demands. Not that song – change the station – louder – more fries – I don’t like my burger give me your chicken – change the station – can we go – give me my fries – I hate that song – etc – etc – on and on till I finally scarf my food down and drive home only to have the demands start about something else.

Now, before you at me about her demands let me remind you she has autism and lots of other issues and yes, every time she asks rudely I tell her to say please or ask nicely. Do you know how many times I’ve said that? Do you think by age 18 that’s ever going to be a skill she learns once and for all? Let me tell you as an experienced mom – no, no she’s not going to learn that once and for all. For the rest of her life someone will have to remind her to say please, ask nicely, slow down.

Another brother has to be reminded to wipe his mouth every time he eats and another to pull his pants all the way down when he pees so he doesn’t pee on himself but he still does on the regular – these skills will not ever be fully learned and eventually someone else, still hoping for that, will take over the endless reminders to do those things they will never learn and yes, I know that sounds hopeless, although I tend to consider it realistic. I’ll never be a ballet dancer or travel the world either but that’s not hopeless, just realistic. I would, however, like to take a nice trip to a beach somewhere. Someday. I really, really hope that’s truly realistic and not a hopeless dream.

More Bureaucracy to Tackle

Friday was the day we took Callie to Social Security to apply for SSI. There should be no reason anyone should question it or make it difficult for her to apply and yet. We did all we could online and sent in lots of documentation that shows she’s bee disabled since birth and still we had to go in.

When we arrived about 10 min. early there were already a good 30+ people in line and at least 10-15 more arrived after us. By the time they opened the door you could barely move in the lobby. Keep in mind people who are at a social security office are disabled, elderly or both. No one in line was in our girl’s category. When we finally talked with the person processing Callie’s application we were told we didn’t need to bring her. Yes, but we’ve found bringing exhibit A along helps the process and yes, I know how that sounds and that’s how it feels but that’s the game and we know how to play it.

In line with us was a young woman who just needed a name change and couldn’t find any info on the inadequate website. She waited at least 30 min to find out there is only one office in our area where you can do that and this one wasn’t it. 

Also in line with us were a couple likely only a few years older than we are who were both governmental workers and tried to apply online but had no success and so took time off work to stand in line to apply. Its unnecessary for me to say how inefficient this is. 

We were making our way in to the office and we thought we heard Callie’s name called. We actually had an appt and most in line did not. We ran in and whoever called our name had disappeared. We sat for awhile and as our line-mates got up to the only computer for checking in, yes one computer for 50 or 60+ people by this time,  Daddy-O asked if he could jump back in and register. Thankfully they were kind and let him back in.

We were called up and were told they couldn’t find we had an appt. We gave the gentleman the paper SSA had sent us with Callie’s name, address, appt. date and time and what we should bring to the appt. they said we didn’t have. We had also received a reminder phone call. He didn’t seem to care about the paper but we pushed it towards him until he took the paper to talk to someone else and then we were called to another window. As we walked that direction I called to him as we passed where he was that we’d been called back. Yes, it’s as confusing and chaotic as it sounds.

Side note – when Daddy-O took Christian to his appt a few years back they also couldn’t find his name. Mark kept telling them his name and they kept saying no. So Mark was wondering if perhaps for some reason his pre-adoptive name, which we are not supposed to know, was linked to his SS#. Finally the processor looked around and said it was Baby Boy – tell me it’s Baby Boy. Yes, you heard that right. He had no name at birth so his original SS# read Baby Boy and that’s where his file was. Insert deep sigh here.

Our next processor was Jenny and she was very helpful. She thanked us for doing so much online even though we weren’t sure it worked in the first place. She said it would normally take 1 1/2 hrs. but this would save a lot of time. We were there 90 minutes.

Now, let me fill in this beauty. Our girl’s BD is just a couple days before the end of September. We didn’t want to procrastinate as her adoption subsidy ended the day she turned 18 and our family budget is tight. When you apply no matter how long it takes to process you will receive payment back to your application day. We applied the day after her BD. When Daddy-O called because we had received a rejection letter the first time applying he was told it was too bad he’d applied in the same month as her BD because it  meant she was a minor when he applied and it just mucked it all up. So, any other parents or teachers or social workers – spread the word – wait until your child’s first full month of 18 before you apply for SSI.

After all was completed with Jenny she told us it would be 3 or 4 months before we would hear whether she was approved and for what amount. The fact that we have a paid mortgage works against us and the fact that she has two brothers who also receive SSI also works against us – i.e. smaller payment. Just as when our kids were under 12 and we’d go to kids eat free night at a restaurant – our big family size works against is as it was one kid per one adult and our ratio never quite worked out that way. Now our ratio and the fact that we’ve been as frugal as possible thus paying off our mortgage will work against us. 

So we wait to see and in the meantime we are without that financial support. We’ll be fine. As I said we don’t have a mortgage, but there are many for whom it would be far less than fine. The poverty rate for those with disabilities is appalling. 

I certainly don’t have all the answers for how to improve the SSA but it could certainly start by not requiring an appt for those citizens who have documentation of their disabilities going back to infancy. We can all agree on that can’t we?

The End is in Sight

Callie girl turned 18 almost a month ago.  That means we now have 3 adults with intellectual disabilities living under our roof. Three adults who will need a place to live and people to care for them for the rest of their lives. Chad, our oldest, is 44 and has lived with us since he was adopted at the age of 8 at then end of 1982. He’s lived with us for 36 years, longer than any of our other children. He is not A child, but he is OUR child.

As we began to think about moving our kids in to adult living situations we contemplated many scenarios. When Chad moved in he was very, very busy, not yet toilet trained and he would run away from us on the regular. We thought – if we can just make it till he’s 16 we could look for a group home. Then he aged and mellowed and we got a little better at this parenting gig and 36 years later, here we are.

A week ago we heard of a group home opening that sounded like a possible fit for Chad and  we scheduled a tour. As we got ready to go our emotions started getting away from us. 36 years ago we were counting the time till he could go and now we felt like we were in a tug of war – he should go but we don’t want him to, we’re not ready for him to. It wasn’t the order in which we saw these three moving out. Chad is by far the easiest to live with now. He goes to an amazing day program and we just thought he’d be the last to move out. It also wasn’t a good fit. It just didn’t feel right. Thankfully we have a social worker who assured us we didn’t need to jump at the first opening that came up. She assured us when we find the right place we will know. Hopefully she is right and we’ll be ready.

Every morning he and our dog Ruby connect and as I watch them it reminds me how much I’ll miss him.

0

Every day since 1983 we have picked out his clothes, helped him dress, made his food, showered him and brushed his teeth, tucked him in to bed, done his laundry, cleaned up his messes, gone to IEP’s, taken him to countless dental, doctor and therapy appointments, met with social workers and made plans, gone to movies, shopping, special olympics practices and meets, redirected his unacceptable behaviors, taught him as many tasks as he could master and have attempted and continue to attempt to teach him many he never will.

We knew some day we would have to “retire” from these daily tasks, but the reality of that being sooner rather than later is hitting us. The reality of having to trust someone besides  the two of us to care for him, for them, as we have all these years is hitting us. It’s the hardest thing the we, as parents of kid’s who are vulnerable and dependent on others, are going to have to do and that is coming from someone who has survived the death of our Shannon, who was severely disabled. It may sound weird, but we got to finish caring for her. We were able to care for her to the end. We will not be able to do that with the three that still live with us. We are going to have to trust others to do that and we are still trying to wrap our minds around that.