Special Needs Parenting

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.

Give me a Break from Winter Break

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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.

Natural Consequences

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For those of you who are passionate about kids with disabilities I would like to suggest you learn about Natalie Weaver and her daughter Sophia. Natalie has become a tireless warrior for her daughter and other kiddos with severe disabilities. She has spoken up loudly about the importance of Medicaid for kiddos with disabilities. I get her. She is a momma bear. 

Other groups have tried to use her voice, her girl, for their agenda and she has fought back. She pushed Twitter after she was relentlessly pursued by trolls saying/posting hateful, hateful things about her precious girl. And she won. Disabilities is now also listed as hate speech by Twitter because of her. 

Today I saw her Facebook post about another internet troll. This person said she should “put her out of her misery” and “I hope you got sterilized so you can’t produce anymore defective offspring”. Hurtful, hateful stuff.

Sometimes people really, really think they’re being helpful but their comments are only slightly less hateful because they want to change your child so they’ll be “better”. Apparently it never occurs to them that you might think they are perfect exactly as they are.  I blogged about Prayer as a Weapon here. 

Natalie asked others to share her post to bring awareness about this sort of dangerous rhetoric so parents of those with disabilities can love on their kids like any other parent without the threat of someone making such horrible statements. I couldn’t agree more.

Many left supportive messages and are calling out the troll and contacting her, workplace etc. to let them know of her hate speech. What I found painful was how many essentially told her to forget about the haters or ignore them they’re not worth your time. This is especially dangerous to me. 

Should I ignore or worst yet tell my black kids to ignore racial discrimination or hate speech? Should I just ignore someone who calls my intellectually disabled kids the “R” word? Should I ignore or worst yet tell my daughters and granddaughters to ignore men who aim sexually disgusting comments at them or who touch them without their permission?

How has ignoring those things worked for us so far? Not very well I’d say. Sixty-one years ago – when I was 2 years old Rev. Dr. Martin Luther King said “Darkness cannot drive out hate; only light can do that. Hate cannot drive out hate; only love can do that”. You can not fight darkness or hate by helping it or allowing it to hide. You can only do that by bringing it to the light.

I have struggled with the use of social media to bring the BBQ Beckys and Picnic Pattys to light for various reasons but I’ve changed my mind. Social media can be the light used to drive out this hate that thrives in the shadows. When white supremists gather together and share racial bigotry, which is not necessarily by using language but also by using privilege to keep others out, or men talk with other men about women in “locker room” fashion – darkness or lack of exposure is allowing that hate to hide and thus strengthening it. When it is brought out in to the light of day it is exposed for what it truly is and right now social media is a powerful tool to do that. 

I’m sure not everyone will agree and sometimes it makes me cringe, but allowing hate to hide, ignoring it, has not worked. It continues to thrive but there are consequences when it is exposed as well there should be and as a long time parent there is absolutely nothing I like better than natural consequences and social media and all the power it has seems to be the natural consequence of our time.

 

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?

Fresh Air and Sunshine

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Girlie needed to wash her bedding today top to bottom. She sleeps with several fleece blankets, a comforter and a very special quilt. 

When her sister Shannon started palliative care at home one of the lovely things they brought were beautiful handmade quilts for each family member. Although most of them have been passed on or weren’t used, Girlie is attached to hers. 

Quilts have had a special place in our hearts and home since Shannon joined our family as every time she was hospitalized or had a procedure at the hospital a special new blanket or quilt would be neatly folded at the bottom of her hospital bed. Generally the only bright splash of color in an otherwise fairly colorless environment. 

Years ago when we frequently flew on vacations due to Daddy-O’s job which provided extremely cheap flights one of our guessing games was always – what color will our rental car be? When we became frequent flyers at the hospital instead, we played a similar game about what Shannie’s new blanket would look like or what color it would be. Shannie was non-verbal but I think she enjoyed the conversation as it helped keep her mind busy on her way to the hospital and in emergency situations it helped us find a way to divert her attention. 

Girlie’s quilt really needed a good washing but it’s beginning to fall apart and she’s not ready to put it away or give it up. As she is close to it, it makes  her feel close to her sister. I’ve tentatively begun to learn to quilt. Likely it makes me feel close to my girls as quilts were a constant on her bed those last few years. So, I get it. 

We took the quilt outside and put it over the porch railing in the cold air and sunshine to give it a fresh smell. Fresh air and sunshine makes everything better and that’ll do for now and for now is all we need to think about.

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