developmental disabilities

Inclusive Gratitude

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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.

More Bureaucracy to Tackle

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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?

Be More like William and Callie

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On Thursday we went to court to procure guardianship for Callie. The closer we got to her 18th birthday the more we were dreading it. We’ve been through this process 4 times before and our last time was just 2 years ago so we know the drill. The drill being to expect lots of waiting in places where volume matters, stillness matters, control of behavior matters. All things that Callie wasn’t able to control. That was before medical cannabis(BMC).

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We arrived about 40 minutes early  because we always think the early bird gets to go first. Not necessarily. So Callie and I walked upstairs and all around the courthouse area where we could walk. She’s a speed walker so that took about 10 minutes. We sat back on our bench, Daddy-O was on one and Callie and I on the other.  I ran to the bathroom after our speed walk and when I came back a young man was sitting next to her. He was impeccably dressed in a stylish suit, with a slick new attache case in his lap, polished and groomed from the top of his head to his shined shoes. He chose to sit by Callie. No stranger ever choses to sit by Callie.

Callie immediately engaged him in conversation about her roller coasters and he was all in for conversation. They chatted about roller coasters off and on and we discovered his name was William, he was a brand spanking new lawyer and this would be his first case in court. Don’t know exactly what his case was, but this courtroom is for guardianship, which he was definitely not there for, and probate/estate cases. 

At one point Callie looked him up and down and told him he looked like a magician and William thanked her. We all chatted for probably 15-20 minutes and it was time to enter the courtroom so we parted our ways.

The courtroom was already crowded as we waited as long as possible but there was a place where we could sit with Callie between us. Now the courtroom, in case you’ve been lucky enough to avoid one, is like old day libraries – quiet. Whispery quiet. Callie is not a whispery kinda girl and she is generally only good with her own noise, not anyone else’s. There were also parents there with a daughter who would occasionally make noises. Callie kept looking over, but when we reassured her the girl was okay Callie accepted that. A reminder – never would have happened BMC.

Now I know judges have important jobs. We’d had this judge before. I appreciated how he talked respectfully with the adults who had intellectual disabilities and included them in the conversation. However, this judge made this packed courtroom wait at least 10 minutes before he arrived. That may not seem like much to most people but here’s the thing, most of the parents who were there were tap-dancing and holding their breathe that their adult children’s behavior would stay in check while they waited. He also did not apologize for his lateness and as a real stickler for promptness, I think that’s just rude behavior. Judges should not be above the law, including the law of civility. Ever. 

Six other families went before us and every time we waited for the clerks to call the next name Callie would ask – am I next? Thankfully the actual process took only about 3-5 min. per family. A court visitor had visited every person, generally a physician’s report had been submitted, it’s really just formality and frankly an area our judicial system could streamline. There may be some situations where a court date seems reasonable, but for the vast majority the adults we families are seeking guardianship for, the need is clear and there are more pressing matters which need attention, in my opinion.

When it was finally our turn Callie sat at one table with the county appointed lawyer representing her, someone neither of us had every met, and we sat at our table with our county appointed lawyer, someone we’ve met because she handles all these cases for our county at no cost to us. I don’t know if that’s the case everywhere, but we certainly appreciate it. She answered the judges questions about whether she wanted her mom and dad to continue to help her make decisions  and such with a firm yes. Whew. She held a roller coaster picture, but didn’t attempt to discuss it. Whew. I should probably mention that we had given her a little bump in her MC(medical cannabis) for this occasion.

When we were dismissed we rushed out the door. My only regret is that I wasn’t able to thank William and wish him well on his first case and his future career. Later I mentioned to Daddy-O how cool it was that William chose to sit by Callie and spent the time to talk with Callie. He looked at me, paused, then said, I think William was pretty lucky to have Callie to take his mind off of how nervous he was about his first case. How right he was and how quick I am to worry about whether she’s “bothering” someone or is being inappropriate. However, William clearly found her to be someone worthy of his attention as well as Callie found William worthy of hers.

It did make me smile to imagine that every time William thinks about his first case he will remember Callie with the hot pink ear protectors who love roller coasters. I’m pretty sure William is just the kind of lawyer we need in this world.

Dear Typical Mom

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Dear Typical Mom,

I’m sorry.

I’m sorry that when we lined up for seats on the Extreme Swings at the amusement park today your tween-age daughter got the seat next to my teenage daughter.

Sorry that your girl was too uncomfortable to sit next to my girl. That she was so uncomfortable that she traded seats with you, and very sorry that you let her.

Sorry you missed an amazing teachable moment with your girl.

You have no idea of the opportunity you missed.

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You missed teaching your girl that she should show respect to those who need a little extra loving care. Even if she was too freaked out to sit by my girl you could have, at the very least, modeled it for your girl. You could have talked with Callie, introduced yourself and your daughter – anything to show your girl that you valued my girl.

You missed knowing a girl, if even for a few minutes, that rode the Extreme Swings and then went to the children’s area to ride the children’s swing ride with just as much unabashed enthusiasm.

You missed spending just a few moments with a girl who demonstrates Satchel Paige’s “Dance like nobody’s watching” quote better than anyone. She jammed to a tune while she waited to ride on the Enterprise, a spinning ride that is vomit-worthy, while others backed away from her. I don’t know if it was because they didn’t want to be near her or because she is a brazen, audacious dancer and she never, ever gives the gawkers around her a second thought. She dances without regard to the stares because, well, because it truly is nobody’s business and unlike most of us, she embraces that. I absolutely adore that about her.

I’d say it’s your loss, but it’s my girl’s loss too. Every time she is ignored it is a missed opportunity to practice her social skills.

So, truly, I am so sorry. Sorry that you missed an opportunity to meet a person so uniquely made, a mold breaker to be sure. I know I’m biased, but I’m pretty sure you missed a one in a million opportunity.

Sincerely,

Mom who is proud of her atypical girl