The Accessories

At 24 years of age, DC started having seizures. **I worried about this when he was younger as I knew autism and seizures often go hand in hand. I had also always heard that in many cases, if your child has seizures when they are younger, they might stop when they hit puberty or if they never had seizures when they were younger, they could very well begin at puberty. I do not know how much truth there is in this but this is what I had always heard/believed, so puberty was my guideline.** (see below)

Once he hit his teen years, seizures became the last thing on my mind, so much so that when he did have his first seizure at 24, I had no idea what was happening.

After the second, he was put on medication and I knew that I was going to have to try to get him to wear a medical alert bracelet.

I was talking to a friend the other day about all of the accessories that DC has been made to wear since the seizures began and she admitted to being very surprised that he agrees to wear any of it, citing our many years of participation in Special Olympics and trying to figure out just what to do with the wrist bands that all of our kids were required to wear during tournaments. Other than the waiting, the wristbands were the biggest hurdle for most of our group.

DC has gotten better over the years about the wristbands. Not that it is still not a little bit of a battle to get him to wear one, but he tolerates it. It needs to come off the moment we leave wherever we were, that required him to wear it the band. THE MOMENT; meaning THE MOMENT. It does not matter if we are in the middle to the road, that wrist band is in my face.

This is the same guy who has no problem wearing 6 to 12 snap bracelets at one time, though.

My biggest fear with the seizures was him falling and hitting his head. He hates wearing hats. He wears them only when he absolutely has to; when it is part of the uniform. He wore a baseball cap when he played and he wears a baseball cap to work when he is working in the green house or on the grounds at his job for protection from the sun. I had to explain that the cap was part of his green house “uniform” to get him to wear it.

I bought a protective baseball cap to replace his “uniform” ball cap to provide some protection if he were to fall at work. I have to say that he has been very good about wearing it, but only at work.

Knowing that the bracelet would be a problem, I ordered some tags from If I Need Help, that have a code that can be scanned with Smart Phone or tablet. I knew I still wanted to try a medical alert bracelet because that is the first thing people look for, but I thought that these tags were a good option in case he refused to wear the bracelet.

I bought the dog tags and the shoe tags. DC also does not like to wear anything around his neck – another flashback to Special Olympics – and to be honest, I am not a fan of him having anything around his neck either. When I was a kid (an infant really), I saw Isadora, a movie with Vanessa Redgrave about Isadora Duncan and that was the end of scarfs or anything around the neck for me – Yes, it IS hard to be me.  The chain that came with the dog tags seemed strong enough to keep him from losing it, but not so strong that it would not break if it got caught in something.

He was not having any of it at first, but I explained that it was important that he wore it in case he “fell down” again (he doesn’t seem to remember the actual seizures or he just cannot communicate it to me. He says/thinks he fell down) so people would know how to call Mom. I had to keep it simple. Someone being able to call Mom, did it for him.

Now,  on to the bracelet. Since I had the tags that listed his medication (that could be easily changed at any time online), I opted not to list his meds on the bracelet. I knew that many times, the first med does not take or dosages have to be changed. I did not want him to be wearing an outdated bracelet or none at all while ordering and waiting for an updated bracelet to arrive after any med changes,  so I just listed: Autism  – Seizure Disorder – May Not Respond Properly – with his name on the back side.

And…. believe it or not; just like the glasses that I was sure he would never wear and/or would lose immediately, or the phone I thought he would never keep in his pocket and lose immediately – he proved me wrong.

He takes them off every night and the first thing he does when he gets out of the shower in the morning is put the dog tags on. After he is dressed and comes down stairs, he sits holding the bracelet and will do nothing else until I put it on (he can’t fasten it himself). There have been times when I was preoccupied with something else that I found him sitting with his breakfast in front of him, holding the bracelet, waiting instead of  eating. First things first, I suppose. There is one quirk, though. He will not  wear it with the text facing out so someone looking at his arm could read it easily. He HAS to wear it with the text facing him. There is no negotiating that point at all.

But go ahead and try to put anything else on his wrist. It still is not happening without drama.

I have written before about the fact that I do try to tell DC about his autism when the opportunity presents itself. I am not really sure that he understands but I do bring it up from time to time. Well, a few months ago, DC decided to read the text on his bracelet. I do not know if that was the first time he had read it or if it was just the first time he read it aloud to me, but he read “Awe-tis-ZUUUUUMMM” – “Is- er Dis-er”- “Does not ‘respend pop-oo-lee’ “, so I took that as another opportunity to talk about his autism.

Me: Autism – that is what you have. Do you know that you have autism?

DC: Yes!

Me: It is why you have a hard time talking sometimes and why somethings like loud noises bother you. I put that on your bracelet so people will know that you have autism and can not always tell us the things that you want to tell us and that sometimes it is confusing for you to answer questions.

DC: Confusing.

That is about as far as I got before he lost interest and his attention went back to getting his bracelet on.

Since that day, when he is ready to have me put his bracelet on, he will hand it to me and say “Awe-tis-ZUUUUUMMM”, causing me to wonder if he now thinks that is the name of the bracelet.

In any case,  we will keep discussing it and we will keep trying….

****

**I wanted to add a portion of a comment I received as explanation regarding seizures, pointing out that something that I do understand now but failed to explain or clarify properly above.

From C: Please note “that autism itself does not cause seizures. Epilepsy that is co-morbid with autism is what leads to seizures. I say this because not making that distinction leads to a lot of confusion and fear that isn’t necessary.
Some people develop epilepsy in adulthood or they had seizures that weren’t outwardly visible until new ones appeared later after they grew up.”

Thank you and good point!

***

I have not or will not receive compensation of any kind from If I Need Help for endorsing their product. I just think it is a great idea and a great product. 

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I guess this must be home..

I never felt as if I had a “hometown”. Of course I do, but I don’t have a special affinity to the town where I was born.

We moved away from the town where I was born when my mother re-married. I was five and my brother was 4. We moved away from her hometown to my stepfather’s home town.

We moved four times to different neighborhoods around his hometown while I was in elementary school. First temporarily to a third floor apartment, while they were looking for a house to buy. A brother was born while we were there, so space was becoming an issue.

Next, to a rental house across town, again temporarily, as they decided to build instead of buy. We lived there for a couple of years until the house they were building was completed.  There, in the rental house, another brother was born.

When I was in 3rd grade, we moved into the finished new house. The new house was just one street up from the old neighborhood, but there seemed to be some sort of line of demarcation between the two neighborhoods. It was like a different world and there did not seem to be any socialization or interaction between the two areas at all.

Being from the other side of this line, it was difficult fitting in and by the time I began feeling like I fit in a bit, still another brother was born, making a grand total of 4 boys and 1 girl (me), in case you’ve lost count. So the search was on for an even bigger house.

During the summer before 8th grade, we moved into the larger house all the way across town, in an entirely different school district and an established neighborhood where every one had been living for years and were friends since birth. I was such a drama queen about moving that I was allowed to attend 8th grade at my old school and graduate with my old friends. In the mornings my step-father would drive me to a bus stop. In the afternoons I would walk home from the bus stop and it took about an hour. By the time I made it home, it was close to dinner time so I did not do much socializing in my new neighborhood. I did not want to anyway.

None of this, of course helped to make me feel comfortable in this new neighborhood. I did not hang out there all that often until I had to start high school. Yes, I did eventually make some friends, but I always felt uncomfortable when we had to be around my friend’s friends, because I was the one who didn’t know anyone or remember the stories and/or people they talked about, I didn’t have the same school experiences or memories. Odd man out, that was me.

*****

Fast Forward: When DC’s dad and I divorced when DC was 3, I moved us to the town where we live now.  I moved him here for one reason, and one reason only; the school system. At the time, this town had the best special education program in the state, so this was where I wanted DC to be. This town was looked upon by ‘City’-burians as affluent and a bit snobby, so the divorced woman with a child, renting (gasp) and working full time (double gasp) did not feel all that welcome. I joked quite often that I was sure I had a ‘City’-bury stamp in the center of my forehead.

Two things that really stand out to this day when I remember our first few years in this town:

 – Watching the local channel to see if there were any Park and Recreation activities would be appropriate for DC. They listed the activities being offered and the subsequent prices. There was a price listed for “Residents” and a separate price for “Outsiders”.  Yes….. “Outsiders”; that was the term they used. Not “Non-Residents” as you would see listed in any other town, but “Outsiders”. At that time, I was technically a resident but I could not help feeling like the “outsider” that they spoke of.  

 – We had been living here maybe a year and a half, if that. I had DC involved in a Special Needs Bowling League. His teacher told me about another activity that DC might be interested in and gave me the paperwork so that he could join. I filled out the forms and brought them to bowling the following week because I knew that they would be taking registrations there. I gave the man collecting the registrations DC’s form and 30.00 cash for the registration fee (a co-worker of mine, who’s son participated in the program told me ahead of time that they did not take checks. I did not know at the time that his wife did not let him write checks, so she probably just told him that they only took cash). Long story short, my forms and registration fee were somehow lost. His teacher called me when she saw that his name was not on the list of registrants and I in turn called the President, whom I had never met before, to explain when and where I turned in his registration forms and who I gave them to. I did give everything to the correct person, I just had his name wrong. (The same person who gave me the wrong cash vs. check information, pointed out the correct person at the bowling alley when I was looking for the person collecting the registrations but gave me the incorrect name for this person. When I say it was the wrong name, I mean it was really the wrong name).    

“I assure you, that you did not give the forms to my ex-husband.”

Yikes! Could this get any worse?

I explained to her that being relatively new in town, I did not know any of these people and this was the name I was given by someone else. I went on to describe the person I gave everything to. She knew who I meant and yes, as I said,  it was the correct person but still, it seemed she had not received it.

“Well, I suppose I will just have to take your word for it, won’t I?”

Sigh….. Fortunately I was much nicer then and I let that go, but it was not the best feeling in the world.

The next day during my weekly visit to DC’s classroom, his teacher asked if I had gotten everything resolved. I told her the story and added that “It must be the ‘City’-bury stamp on my head” at which time she turned to one of the IA’s and said “I didn’t tell her that”. I did not know what was going on at first, but as it turned out, the IA she was speaking to was also from ‘City’-bury. She grew up in the very same neighborhood that I lived in through high school and her father was a guidance councilor in the high school that I attended. I actually worked for him in the guidance office for a few years during my study hall hours.

Apparently, she had used that same phrase and felt the very same way on occasion. I was glad to know I was not the only one with the dreaded stamp on her forehead.

****

Fast Forward: We have lived in this town now for 22 years. The original plan was to stay here until DC finished school. Although I could never afford to buy a house in this town, I’m sure I could afford one elsewhere. Not a great house, by any means but better than a 4 room rental.

He has been out of school for 5 years now and we are still here. I have many good friends here now. More importantly, DC has friends here. We like living here. We semi fit in. We are involved in the community.

The woman in the registration story and I became good friends a few years after our not so great first encounter and have remained friends to this day. I wonder if she even ever made the connection between that person on the phone that night and me? I never thought to bring it up.

Although I can still sometimes see and feel that old ‘City’-bury stamp, I do feel as if it is beginning to fade.

So, I guess we must be home…..

***

 This has been a Finish the Sentence Friday post. This week’s sentence is “My home town…” 

Finish the Sentence Friday is a link-up where writers and bloggers come together to share their themselves with a particular sentence. If you’d like to stay ahead of future sentences and participate, join our Facebook group.  

Revisiting “Feeling Chastised”

The following was written a few years back. It was written more about the discourse  within the autism community and not about autism awareness or acceptance. In actuality, I suppose it could be looked at as a piece supporting  the awareness, acceptance and respecting the differences in the ways parents view autism. There is far too much hostility.

I am re-posting now, in this, the month of April. With all of the added awareness and supposed acceptance that has taken place over the last few years, really not too much has changed in this, our little corner of the world, or in my friend’s corner of the world. Not very much at all.

If anything; things have become more difficult….

Dear Abby – Feeling Chastised in New England

Let's all celebrate

Let me just begin by saying that since I began writing this blog I have had the pleasure of meeting a few Autistic Adults.  They are amazing individuals that do a great deal to raise awareness about autism. I “speak” with one in particular often enough to consider him a friend. He is a wonderful human being and it makes my day to “talk” with him or just read his posts. He is truly an inspiration to parents of children with autism, other teens and adults with autism. But above all that, he is a glowing example of the good things that can be found in today’s young adults in general. I don’t think of him as having autism, I think of him as my friend, plain and simple. I’m honored to have him as my friend.

My son’s autism or level of autism  is not like my new friends’. Autism affects each person differently.  Therefore, parents should not be made to feel inferior or chastised for their own beliefs. Everyone is different, everyone. There is no right or wrong when it comes to autism, just a lot of people arguing with each other, it seems.

Today I received this private message on my face book page from a friend of mine who is pretty much in the same boat as I am “level-wise”.

The fact that she did not feel comfortable posting it publicly, speaks volumes about the environment we find ourselves in with the hostility that she (and I) knew would have ensued had she posted it publicly.

(The following message is used with permission. The names have been changed to protect the innocent)

Dear Abby (Vickie)…I think I’m missing something. Why is it wrong to feel like I’ve lost something in having an Autistic son? Why are we supposed to not want a “cure” or something that helps them handle this world we live in a little better? I look at the video of Bob from birth to 18 months and there were signs, but he was still there. It was June of 1996 – he was 18 months old – all of a sudden he disappeared. He is lost to me. He will never have a normal life. He will constantly need care and supervision. There are many people that are on the much higher functioning side of the spectrum that can navigate the world today. Bob is not one of them. Why am I supposed to not want that to be different? People say you don’t miss what you never had – but I know what could have been. I know what life he could have had and now for sure will not. He will find happiness somehow; he will be as productive as his disability allows him to be. But the sky is not the limit for him. The opportunities for him are not the same as they are for my daughters. Why am I supposed to celebrate that? With all this  hullaballoo about celebrating autism over the last few months, I’ve been feeling like a minority. I think these kids are lost – lost to the life that could have been, lost to the possibilities that would have been. I feel they have a disability because they are “not able” to process and handle what happens in life the way others do. Why are we getting lost on the rhetoric? Am I missing something Vickie?

Feeling Chastised in New England

I have said this many times and in many different ways:

  • I celebrate my son as an individual
  • I celebrate my son because he is my son and I love him more than words could say.
  • I celebrate his accomplishments, no matter how large or small they may be.
  • I celebrate him because he is wonderful.
  • I do not celebrate his autism.

I write stories about my son because:

  • He is wonderful.
  • I’m very proud of him.
  • I’m very proud of his progress.
  • He makes me laugh every day.
  • He makes me smile every day.
  • He makes me worry every day.
  • I believe these stories shed a little bit of light on autism and the way his mind works – not all autism, but his.

I don’t believe anyone should be made to feel “less than”. I don’t consider my son “less than” but there is an issue. There is that life he could have had. Maybe it would not have been a better life, maybe it would have been, but at the very least he would have been able to understand it and navigate through it.

Celebrate Autism? I can’t do that. Maybe others can, but I cannot celebrate his level of autism.

Individuals should be celebrated, not the diagnosis.

Like “Feeling Chastised”, my son will never be able to live on his own. He will never be able to take care of himself. He will not know when/if he’s being taken advantage of. He does not understand danger or safety. He is verbal but really not able to communicate if something might be wrong.

My suspicion is that many of these parents in celebration have younger children or children that can function at a higher level than mine. They still have hope of great progress, and they should have hope, there is always hope. I still have hope for more progress, but living in the real world I know that even though he continues to make progress, none of the issues listed above will improve enough that I will not spend every day and night worrying about what will happen to him when I am gone. This is the stuff our nightmares are made of. What’s going to happen to them when we’re all done celebrating autism? Our “kids” are going to outlive us, people. Who’s going to take care of them? Will they be cared for in the same fashion that we have cared for them?  How drastically will their life change then? Think about it.

If I haven’t said it a hundred times, then let this be the hundredth; if I were to live forever, I would not change a thing about my son. He’s happy almost all of the time. He loves his life. He is in his own little happy world, but he won’t always be able to live in his own world, he will someday have to live in the real world. Then what?

When your child with Autism becomes an adult with Autism and your own mortality begins to slap you in the face, come back and talk to me then about this celebration we are supposed to be having.

Those of us with adult children that will not be able to live or navigate the world with out constant support, that have been in the trenches for many years, long before there was a “spectrum”, long before there were many of the services available today, deserve a little bit of respect and deserve to be able to voice our opinions as you are allowed to voice yours;  to want something more than a celebration.

I believe in raising awareness. I believe in trying to make people understand Autism. I believe that INDIVIDUALS and accomplishments should be celebrated. I also believe some of us need more than that.

My only wish is to be able to die in peace knowing my son will be okay…….