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?

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.

Medically Fragile Kids are Students First in School

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Yesterday was Shannie’s IEP.  Mark went as we had some concerns and I knew he would make the case in a non-emotional, calm, cool and collected way. He is just so much better at getting the same result with less emotion involved in the process then I am.  I’m always so grateful to have a partner in these situations.

Shannie is in a classroom geared for kids who are classified as medically fragile.  She definitely qualifies, but only in the technical sense as far as I’m concerned.  She hasn’t been in the hospital for illness, always pneumonia, in over 10 years.  All other times were scheduled orthopedic surgeries.  Compared to many kids in this classification she’s on the milder end – no trach or ventilator – for which we are super grateful for sure.

Our main concern was that Shannie be treated as a student at school, not a patient, and sometimes it seemed as if that line was blurring.  Often her notebook came home with oxygen stats or temperatures on days when she was not the least bit sick.  In fact she’s maybe missed 3 days of school this year due to illness, general illness,  not life-threatening illness.

I tend to prepare myself for a possible fight in these situations, but more often than not, when we lay out the issues and clarify our expectations all is well.  In this case, Mark shared with her staff the anxiety Shannie feels surrounding medical situations and whether her anxiety was playing in to what they perceived as illness at school.  Everyone seemed surprised that she responded with anxiety – to the point that versed, an anti-anxiety med which also produces amnesia, – is given to her as soon as she enters the hospital for the injections she receives four times a year under anesthesia.  She has been known to raise her temp. several degrees when she is anxious.  This is why I was so concerned that the hyper-vigilance over her medical issues be dialed back.  She has enough real issues that have to be dealt with, let’s not pay attention to anything that’s not a real issue.

Shannie often freaks out people who are not familiar with her frequent coughing, rattling in her upper chest and occasional gagging.  We, who are familiar with her, know for Shannie, this is normal.  It is always upper, as in back of her throat, respiratory stuff.  It is very rarely actually in her lungs.  Her “normal” takes some getting used to and absolutely requires some relaxation on the part of her caregivers.  You can not get worked up over every funny sounding breathe or muscle cramp/jerk, seizure etc. or you’ll make yourself sick with worry.

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Yesterday was a great example of the purpose of an IEP, in my opinion.  It helps clear the air and get everyone on the same page.  Ultimately, with Shannon, we are the ones who will pay the price long term for whatever decisions are made regarding her health.  Our goal has always been for her to be comfortable and experience as much in the school setting as possible.  When she is a student first and a student with some medical issues second that goal is a lot more likely to be achieved.