The things we know…. and the things we don’t

Just 5 minutes inside his head.

My friend Peg and I have often discussed just how fantastic it would be if we could just get inside our kids’ head for five minutes! That is all we wanted, 5 minutes…. 5 minutes just to see what is really going on in there.

We never really know, we may think we do, but we really, really don’t.

As much as I think I know my son like the back of my hand, there are still times when I realize I do not know anything at all.

For example, during his 3rd year of swimming with Special Olympics, his coach yelled over to me one day at practice “He just figured out he can open his eyes with the goggles on!” – At that point in time, he’d been wearing the goggles for practice twice a week and during competitions for as I said, 3 years. It never occurred to me or anyone else for that matter that he didn’t know he could open his eyes while wearing them. I suppose, that knowing him as I think I do, it should have, but – no, it did not.

I am relatively sure he does not understand “death”. Other than Bambi’s mother and Old Yeller (who was quickly replaced at the end), none of his favorite Disney characters ever die, really. If they do – it doesn’t last. Someone kisses them, or a spell is cast and there they are, good as new. I try to talk to him about death, due to my “dropping dead” obsession and because everyone dies eventually. I never want him to think I just left him, but I really can not say that he understands it at all.

DC seems to live in the present. Things change and he just changes with them. I had a conversation with my friend, Toni a while back. Her daughter can watch something like Full House and relate it to her own life – high school, college, get a job, buy a car, get married, and have children. DC watches but does not relate any of this to his own life. He went to high school because I sent him. He moved on to “college” because I sent him and so on. I tell him what to do and he does it. I have tried to have conversations with him about what he thinks should come next in his life, but these conversations just tend to go to “dinner” or whatever meal or activity may be coming up. His future is not a concept he can grasp. He lives in the present and doesn’t seem to think about anything changing in his life, things just change and he just goes with it.

So the other night DC was on a ‘picture drawing’ roll – Flowers for Mom, Hearts for Mom, Birthday Cake for Mom and then this…..

Wedding Cake ? For Mom?

Needless to say I was a little bit thrown. DC’s Dad and I divorced when DC was 3. At the time, I didn’t try to explain it to him, I was too busy trying to get him diagnosed. It didn’t seem to faze him, he still saw his Dad every week and I was sure he would not understand any attempt I could make at explaining it to him. He never seemed to think anything of it. As marriage is something I never had or have any desire to do again, it is not something we ever talked about. Other than adding “Baby for Mom” to his Christmas list a few years ago, I never really had any indication that he might realize that things may be different here than at his friends’ homes. I am still not sure that he does. It has always been this way – it is what he is used to.
Most of his friends do have parents that are together and they also have brothers and sisters. But I still do not think he relates that to his own life. But again, every time I think I have him figured out he does something like presenting me with a drawing of a three layer wedding cake specifically for “Mom” and he has me guessing all over again.

That five minutes in his head, would come in very handy right now, but since I can’t have that, I am going to assume that he just really loves Wedding Cake and he just wants to share with his Mom………….

Everyone needs a little “fairy dust”

Posted by TakingItAStepAtATime

Everyone needs a little Fairy Dust

Harassing my co-workers for their paper towel rolls for a project this week, made me think about the reasons I don’t buy paper towels myself. This then led me to think about all of the other things I don’t buy, have to hide or make adjustments to, around the house.

Shampoo: This is no longer an issue, but at one time and for many years if I forgot to take the shampoo out of the shower, most of the bottle would be used to paint a masterpiece and the rest went down the drain…… every time.

Paper Towels: Paper Towels are for shredding and only for shredding. On the rare occasion that I do buy them, they have to be hidden on top of the refrigerator. Hiding the paper towels makes them not very convenient for me to use and forgettable, so there really isn’t any point in buying them at all.

Paper: Every single piece of blank paper in the house has a Disney character’s name written on it. Teachers, Camp councilors and anyone else I have to write a note to, receives that note on our exclusive custom stationary. After a few weeks of notes to camp, the Director finally asked “Do you guys do ‘A Character a day or something’?” No, unfortunately nothing that creative, I just can’t keep the paper out of the hands of my in-house stationary designer.

Construction Paper: Construction paper is also used specifically for character names, BUT according to the rule made up in his head, these sheets can not and will not be saved. They MUST be cut up into small pieces with scissors and spread out all over the floor. He must also write on each sheet of an entire package of paper before he begins the job of shredding/cutting. A few pieces just doesn’t do it. A package of construction paper will only last an hour or two after it has been opened.

Old Grainy picture of DC surrounded by shredded construction paper.

He has been a bit better with the construction paper lately. He still writes his character names. He still will not save them as he does with plain white paper, but now at least, he rips them up, one at a time and throws them away. – (say it with me….) Progress!

Baby wipes (or hand wipes): Wipes are used for “Cinderella chores” ; washing the floor and door. This could actually be a good thing if he didn’t use 20 of them to wash the same spot on the same floor and the same spot on the same door. We don’t buy wipes anymore.

Scotch Tape: Scotch tape can be used on anything and for anything. For the most part, it is used to tape up pages in his books. Some books require an entire roll for just the smallest tear. Scotch tape can also be used to build a drum out of a cup or a bowl. He covers the top of the cup or bowl with tape….. a two roll minimum of tape, and this is his drum. Yes, creative, and yes he figured this out by himself but now I have to hide my tape in the cellar if I hope to find any when I need it.

His very own scotch tape is now an item on all of his Christmas/Birthday lists. One friend in particular has been very creative with her gifts of scotch tape. He just loves them!

Scotch Tape: For the boy who has everything!

Pens: No matter how many pens I hide for myself, I can not ever find a pen. He has all of them…… somewhere, I don’t know where and he is not telling. He will return the pens that don’t work – those are always readily available.

Buttons: If there is a button there, it needs to be buttoned. Years ago I thought I was being sneaky by removing the top button on all of his shirts so he would not insist on buttoning everything right up to his neck. I discovered I was not as slick as I thought I was one day when DC brought me one of his shirts to have the button removed. He knows there should be a button there and knows I’m cutting it off, but for some reason this is alright with him. Leaving it on and not buttoning it, is not.

Other clothes: All tags must be removed from all clothing. If he should find the smallest rip, tear or string, he will proceed to shred that article of clothing. It may take him all day, but he will make sure it can never be worn again. Just recently I mistakenly bought him a pair of jeans that had ready-made tears in them. When I realized, I was sure this would be a disaster, but for some reason, it was fine with him. He wears them quite regularly…….. figure that one out. I can not!

Salt: We do not keep salt or sugar on the table. Both are used as fairy dust. There is no other use for salt, except to be used as fairy dust. Crumbs, the cereal dust at the bottom of the cereal box, crushed chips and a number of other items can also be used as fairy dust, but salt is the ultimate in fairy dust.

I’ve been “Fairy-Dusted” many times, so has the kitchen, the living room, restaurant tables and his uncle when, a few years back, DC got his hands on some cotton candy sugar at a picnic (Cotton Candy Sugar = Pink and Blue Fairy Dust; what could be better!) Delightfully he took a very large handful and “dusted” his Uncle’s head yelling;

“Think of a wonderful thought”

Who doesn’t need a little Fairy Dust every once in a while?

His Uncle didn’t get it……..

But really…..who couldn’t use a little fairy dust every once in a while?

(He is better with salt these days, but I will not keep it on the table, it is just too much for him to resist)

File under: “Rules I thought I would never have to make”

Posted by TakingItAStepAtATime

As promised in “Looking Handsome in the Princess Room”, here is the story about the next time DC met Snow White.

Right around this time last year we decided to go on a Disney Cruise. DC as you can imagine, was very excited. He loved the cruise, the shows, the mountain of bacon he tried to sneak every morning and of course, the characters on board, specifically the Princesses.

This particular evening we had just met one princess and were about to get in line for “Alice” when the boy that was managing the line told us that Alice was almost finished and ready to leave (we seem to have that same problem with “Alice” every time we see her, but it always works out – another story for another time). We went and stood where DC could at least see her and explained that she was leaving soon so he would not be able to meet her. The “Line Manager” who must have been watching DC when he met the previous princess and also saw how excited he was just looking at Alice, came over to us and told us that Snow White was due out soon and he had arranged it so we would be second in line to see her. First in line would be the family of the woman who was playing Snow White (shhhh! I didn’t say that!).

After everyone cleared away, he put us and “the family” in line. DC was over the moon and she hadn’t even come out yet!

I think we have been to Disney every year – or close to every year since DC was 7 but he is always just as excited to see the princesses as he was the very first time. The “Line Manager”, between dancing up and down the line, stopped to talk to DC a few times. He was getting a kick about how excited DC was.

Finally she came out. We waited through the family visit and pictures and then it was DC’s turn. I took my regular position with the camera and Doug stood off to the side a little bit.

DC was having some sort of conversation with Snow White while I was taking pictures.

Meeting Snow White

Next he gave her a huge hug, she seemed okay with that.

The Hug

Then……

He got so excited, he picked her up and swung her around in a circle like a rag doll!

Did I get a photo? no… a video? no. We (the “Line Manager” included) were all too busy charging the little stage area because he was not letting her go!

I have to hand it to Snow White; she stayed in character the entire time!

“Oh MY! How strong you are!”

Obviously, he was not trying to hurt her, it was just a very exaggerated hug!

Snow White was fine – everyone was fine. We got our picture and left the area, but I felt it was necessary to make a new rule;

“YOU CAN NOT PICK UP THE PRINCESSES!”

I didn’t realize that the same people play the same princess parts for the duration of the cruise until a few nights later when we went to the Princess Room to see 4 princesses. I realized that it was the same Snow White. Oh boy, I was sure she was going to call security for DC’s visit.

When we got to the front of the line, the “Line Manager” from the other day was also there.

“Hey, I remember you!”

I said that I was sure that he did.

He turned to Snow White and said “Snow, do you remember DC?”

Snow White said “Oh My yes! You are very strong!”

I told both of them not to worry, we have a new rule and DC will not pick her up and spin her around.

DC walked up to Snow White and said,

“I have to “Apolo – gize” .

That was a complete surprise to me and Snow White seemed to think it was cute. She told him everything was fine.

He proceeded to “Apolo – gize” to every other princess in the line. They all accepted his apology even though the rest of them had no idea what he was “Apolo – gizing” for.

I’m sure they were all informed later……..

The rule has been altered a bit since then. Now, anytime I know that we are going to meet anyone that he will be excited about, I ask:

“What’s the rule?”

DC answers “Don’t pick up the people”

I think that should cover it.

There is another great story about this vacation and I will get to it one of these days.

Seriously?

Posted by TakingItAStepAtATime

I have read so many articles and lists recently regarding “What not to say to an Autism Parent” and “The 10 dumbest things people have said”, etc…….

And yes, yes, I’ve heard almost all of them before – more than once.

I’ve been told “He doesn’t look Autistic”

He doesn’t look Autistic

At a birthday party a parent asked “Does he eat?”

Another: “Can he talk?”

Yes

“Well he’s okay then, right?”

I’ve always said that I’d rather people ask questions than stare or assume. Some people do, and I always welcome the fact that they want to learn. I have had many wonderful conversations with strangers that were genuinely interested in learning about autism – his autism, as the saying goes…. “If you meet one Autistic person, you’ve met ONE Autistic person.” ~ Unknown

Recently I was visiting DC’s work program. There was a woman standing there that looked a bit familiar to me, but I could not place her. She looked at me and said “I know you, Vickie”

I was the team manager for our local Special Olympics golf team for a few years (insert laughter, as I know NOTHING about golf) and her nephew who has autism, was one of my players.

We chatted for a bit. As it turned out, she was there because her nephew was transitioning into the same work program as DC.

As we were chatting, she said:

“Your son is SO handsome. You should be thankful he has Autism so you won’t have to worry about all of the girls that would be flocking around him”

Now she is a very nice woman and I know in her own way, she actually thought this was a compliment, but……..

Seriously?????

Literally Speaking

Posted by TakingItAStepAtATime

Raining Cats and Dogs

Twelve years ago, I wrote this:

“You can NEVER be too specific:

While learning “grocery shopping” in the classroom; his plastic cart full of plastic food… he was told that it was time to “put everything on the counter to pay” – Instead of taking the food out of the cart, he lifted the entire cart onto the counter!”

And

“When you tell your child to pull his sweat pants down over his socks and he proceeds to PULL HIS PANTS DOWN from the waist to his ankles – You know you were not specific enough with your request.”

And a few years later, this:

My son loves to write little “stories” (he thinks they are stories, but they are usually just one line).

I had been home from work for a few days with the “Flu”. It really didn’t occur to me that he had no idea what the “Flu” was and I wondered why he would laugh each time I mentioned it. He decided he would write one of his one-line “stories” for me to make me feel better ……

“Mom was so high”

It took me a few minutes…… but then I realized he thought I “Flew”

Then there was the time I said “Now listen closely” and he stuck his face one inch from mine…..
He laughed for about a week after I told him it was time to “hit the road”.
Or.. after the third round of kids whacked the piñata at his camp Halloween party, the Director said “Okay, DC, lets’ see you to tear it up” – he yanked it down and ripped it apart with his hands.

Tear it up

There are so many other examples, but these few really stick in my head.

Needless to say, like many people with autism, DC takes everything literally. Over the years, I have gotten much better at recognizing when something is said or read that taken literally will not make much sense to him. I always try to stop and explain what it means in that context, whether he asks or not.

He has made a great deal of progress in that area as well. He knows that the “flu” does not mean “flying”. He gets that “hit the road” means we have to get going. But he knows these things because they were explained to him, he is not able just figure it out himself – how could he?

Knowing this about my son, I suppose, when I told him to “walk slowly” on the sidewalk just in case there was ice (there wasn’t), I should have expected this:

Progress with a Side of Pasta

Posted by TakingItAStepAtATime

Progress with a side of Pasta

Looking back over the past year, I can honestly say that it has been a very good and productive year.

DC completed his first full year of “work”. He transitioned into it very well. Me? I am the one still having a problem calling it “work” and not “school”, the “car” is here, instead of the “bus”. I panic each time a school vacation comes along because I have to make plans for DC while I’m working, until I realize he doesn’t get those weeks off anymore; he’s working. The transition seems to be much more difficult for me than it was for him.

Volunteer “Dream Job”

My “Broadway Baby” also has a volunteer job as a Greeter at a local theater, with a job coach of course. He loves it and does well. The shifts are long, but he makes it through and he is happy when he gets home. How many of us can say we have our Dream Job? DC has his.

Because of his “theater experience” he was asked to help his camp by passing out programs at the annual “Thank You to Our Civic Groups” picnic. Unfortunately, the promise of cheeseburgers after he was finished totally distracted him while he was supposed to be working, so we will write that one off as a “trial run” and I will know how to better explain the process to him next year.

Communication-wise, I’ve noticed that I am doing much less prompting to get him to respond to a greeting and many times he will initiate a greeting himself; although “Hello Old Lady” isn’t exactly in my top ten, he DID initiate the conversation himself. He was also able to tell me a couple of times, in his own way, but in a way that I was able to figure out, that he wasn’t feeling well.

He has been asking to do more things “All by myself”, like making his lunch for ~~school~~ work, his breakfast, making his bed and shaving. “All by myself” means he doesn’t even want me in the room (a good thing with the shaving……. I make him nervous – me?- “Mom, are you still here?”).

This year we skipped our annual Halloween trip to either Salem or Sleepy Hollow and decided to go to New York ComicCon. To say it was crowded is an understatement. He did well. Yes, he was anxious, but he controlled himself as best he could. Mike TeeVee came at the perfect moment. DC was getting anxious so we were on our way off the show floor because I could see he was getting upset. We happened upon “Mr. TeeVee” on the way. No line, as I don’t think anyone realized he was there yet. He was very nice and was able to spend some extra time with DC. DC calmed down right away.

He waited in line for an HOUR and A HALF to see the love of his life, Felicia Day. Do you remember when your kids were little? When they would finally eat or do something that they never would before and you were afraid to even look at them for fear they would stop? This is exactly how I felt standing in that line with him. I don’t think I was even breathing. Fortunately she came out early and we were relatively close to the front of the line, so I knew we were “home free” at that point. He was excited when she came out but then he turned to me and said “I am very nervous about this”. He has used the word “nervous” up to this point only when there was a storm, never about meeting anyone. I think he realized right then and there that the people he sees on TV or in the movies are real people AND that this person, that he adores, is someone special.

Penny’s Frozen Yogurt

We made it to the front, I could breathe again. She was lovely to him. It made his day.

He was also able to meet William Shatner. He does know who that is due to his mother (me). He was very nice to him as well but “no pictures please”. We did forget to tell him that DC was born on his birthday; maybe that would have rated us a picture –but live and learn.

His Uncle asked him to sing Edelweiss at the table on Christmas Eve. DC is, and always has been, a ham so I was surprised that he sang the song, looking only at me and then buried his head in my arm when he was finished. Bashful! Embarrassed! I don’t know if this is a good thing or not, BUT, it IS a new reaction and a new emotion so I will add this to the Plus Column as well.

There is so much more I can say about this year, but my point is, DC is 22, he continues to make progress. No, not in leaps and bounds as he did when he was younger, but it is there.

No matter what the age, there is always progress to be made. It may not even be noticeable right away, but it is there.

And, Oh……. On New Year’s Eve, Eve, two days before the year ended, he actually ate pasta. PASTA!

Happy New Year!

Avonte Oquendo’s hopeful family continues search – New York News

Posted by TakingItAStepAtATime

Avonte Oquendo's hopeful family continues search – New York News.

Still Missing! Please share!

Anxious?…. Who?…… Me????

Posted by TakingItAStepAtATime

One could (and would) say I am a little bit anxious, just a tad…… especially when it comes to children. I drive myself crazy watching other people’s children. I’ve pulled drowning kids out of pools and lakes while their parents were not watching them, grabbed kids away from traffic, ledges or anything that may cause an injury, again while their own parents were not watching. When we go to a fair or some other type of event where there are a lot of people, there is a good chance I will be bringing a lost child to security or helping him/her find his/her parents. There’s more; but you get the picture. I can’t help this. I have always been like this. I have always said that I am just too paranoid to be anyone’s mother.

So why not give me a child with Autism…..

Welcome to a whole new level of anxiety…..

I was talking to my friend, Al at work last week. His son had just been sick; trip to the Emergency Room sick. He’s just fine now, but I can imagine how frightening it must have been at the time. This particular day was the day of his follow-up appointment. From there we moved on to the subject about his own anxiety. He insists on taking his kids to the doctor for everything (in his words). I get that! It’s always worth a trip to the doctor just to hear everything is all right than to continue to worry that a cold may not be just a cold…..just for the peace of mind. But he was beginning to feel that he was being overly protective.

Now believe me, he has heard plenty of my DC-obsessed stories before but I decided he needed to hear a few more.

I told him that when DC was little I would calculate the time that he would be alone until my ex got home from work if I dropped dead, “right now”. I’d make sure there was nothing around that could hurt him if something like that were to happen. I had no reason to believe I’d be “dropping dead” at any time, but just in case, I had to be ready. I forgot to tell him that I would also force myself to watch Rescue 911 (hosted by William Shatner) when DC was little and then have nightmares about all the horrible things that they showed. His father always asked why I insisted on watching a show that gave me nightmares. I told him that I was afraid that they would show some sort of dangerous situation that I hadn’t considered yet and I might miss something very important to DC’s safety – There were actually a few accidents that I wouldn’t have come up with in my own head, believe it or not, unless I had seen the show. So there!

I also forgot to tell him about the time I called my poor sister-in-law at her cottage continuously because his father took him camping at the beach, near her cottage and didn’t call for two days! What if something happened to him and DC was in some tent on a beach of all places, by himself? – Fortunately his Dad’s sisters are used to me…..

I’ve been a single mother for 20 years now and I wouldn’t have it any other way, but being alone with a child with special needs can be, for me frightening at times. Anytime I am sick I wonder again, if I dropped dead “right now”, how long would it be before someone knows he’s alone? What would he do? Would he be safe until someone figures this out? As you can see, it’s not the me “dropping dead” that I worry about, it is DC being by himself for who knows how long.

The final nugget from the “tales from the anxiety-ridden mother” for Al was to tell him that when DC was young and we went grocery shopping; he would get in the car, I would unload the groceries and then I would walk the 20 feet to put the cart back, in full view of the car. But I would be sure to leave his door wide open because if I happened to get hit by a car in those 20 feet (or drop dead), no one would know he was sitting in the car and I couldn’t say for sure that he would get out or let anyone know he was there. He could be sitting there for hours before someone notices. At least someone might wonder why there was a car door wide open in the parking lot and take a look inside.

– In any situation, I can come up with at least a dozen disaster scenarios. I can and do make myself crazy over this child, but he’s worth every second of my the anxiousness.

Needless to say, Al went home that day feeling much better about himself.

He’s 22 and in case you were wondering.. I do still check to see if he’s breathing at night.

(We won’t talk about the 6 days with no power, no phone and no cell service during the snow-pocalypse a few years back………)

“I Love you, Mom” (Just a little Thanksgiving Quickie)

Posted by TakingItAStepAtATime

DC flashing the I Love you Sign as he does almost anytime he walks by me.

Who would not be thankful for this wonderful child who will just flash me the “I Love You” sign, just because he happens to be walking by or just randomly peek around the corner to say “I love you, Mom”.

Happy Thanksgiving…….

Dear Abby – Feeling Chastised in New England

Posted by TakingItAStepAtATime

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 the part of his autism that will keep him from being safe and out of danger.

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.

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…….