Saturday, March 26, 2016

The 25th Birthday



Twenty-Five


6 3rd party_0003
This week we celebrated DC’s ‘twenty-five birthday’ (DC-speak).
TWENTY-FIVE!!!!
I just cannot wrap my head around that fact. I cannot believe so much time has passed. I cannot believe that the little boy that I once carried around… everywhere, is 25 years old. I have heard about his ‘Twenty-five’ birthday all day, everyday since the calendars changed from February to March, but it really did not hit me, emotionally until the day before, when some tears were definitely shed.
‘Happy tears’ – I told him. He loved that.




















He has come so far in those 25 years….

From the boy whose only word until he was almost 7 years old was “”Momma” –
To the boy that eventually moved on to –
“Mommy” – and then –
“Mother” when he’s feeling a bit more formal and/or reciting Disney.
To the man who at times decides that “Vickie” is appropriate because in his mind, he is an adult and he should call me by my adult name.

From the boy who was always the loudest person in the room but could not tolerate noise or crowds –
To the man who is still the loudest person in the room, but can tolerate noise and crowds so much more easily, most of the time.

From the boy with the very limited menu who I thought would never gain any weight –
To the almost 6ft, 200lb man, still with a limited menu, but a bit more open to trying new things.

From the boy, who due to a delayed reaction from almost choking, completely stopped eating for almost a month –
To the man who can still have the random delayed reaction,  but now his Mom can usually recognize it and figure it out much more quickly.

From the boy who could not stand to be away from me at any time and had no interest in his peers and socializing –
To the man, who still must know exactly where I will be, but looks forward to spending time with his friends and attending social activities.
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From the boy who, I was told would never speak
To the man who never stops talking.

From the boy who was always lovable with me when he was a baby but had a very low tolerance for his head, ears, face and so many other touches that I remember saying,  “If he wasn’t so loveable, I would think he hated to be touched”
To the man, who will still hug and kiss his Mom (and is not embarrassed to do so), but will also hug his friends, his family and just about anyone he wants to, whether they want a hug or not.
I cannot be more proud of my boy…. I cannot love this child more. He amazes me everyday. He makes me laugh everyday. He fills my life with worry. He fills my life with love. I would not trade the last 25 years for anything in the world. He is the joy of my life.
If I had only one wish; my wish would be for the rest of his life to be as happy as it is right now and that he will be just as full of sunshine and light as he is right at this moment……
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Saturday, March 19, 2016

The Things I am Tired of Hearing

Insert: ‘Colorful Metaphor’ (or: The things I am tired of hearing)



colorful
These and many variations of the same, are comments I often hear
  • “You are so lucky that DC can travel”
  • “You are so lucky that you can take him places”
  • “You are so lucky that…… blah, blah, blah….
Luck does not have very much to do with it! DC’s accomplishments took a great deal and many, many years of hard work. Now I do understand that all the work in the world may not always make a difference and I am certainly not saying that the parents who are having a more difficult time of it did not or are not putting in the work – but seriously, why is it always about luck?

How many times have I heard that same line? “You have it easy, DC is such a good kid.” – Why are we made to feel as though we should apologize for our children making strides and accomplishments? Isn’t that the goal? I have also had other parents tell me that they are made to feel as if they have nothing to contribute because their children are just not ‘difficult’ enough by someone else’s standards. Or the line that I love the best – “You just don’t know what it’s like”. I have heard that one many times from parents of autistic children as well as parents of NT children.

 No, maybe I don’t know exactly what your life is like but I can certainly say the same to you.

When DC was four years old, his school speech therapist informed me that he would never speak. He speaks. He is verbal. Conversation is difficult, but he is verbal. Would he be able to speak now if I believed the nonsense that this therapist was spewing? No, I went out and found him a private speech therapist while continuing to fight with the school system.

I can take him places because I TOOK him places. I am a single mother – have been for a good 23 years. I took/take him everywhere. If I did not, he or I would never have left the house.  It wasn’t always successful, many times it was an out and out disaster. Most times we were both in tears by the time we left but we kept at it.  Did I let it bother me or deter me from taking him shopping when the check-out man at the Health Food store saw fit to stop the entire line while DC was wigging out (we didn’t have the official “meltdown” word way back when) and I just wanted to pay and get out of there before I burst into tears? When he found it necessary to give me his opinions – in front of a line of waiting customers – about what vitamins and/or supplements I should be giving him to calm him down?
 <Insert colorful metaphor>

Should I have stopped taking him out when he would grab food off of other people’s tables when we walked through a restaurant? (I always offered to replace the food or drink he may have touched before I could grab him). No, I learned that I had to hold both of his hands and tell him over and over again that he should not touch other people’s belongings, until he learned and until I felt that I could trust him not to. That took years.

Should I have just given up and just stayed home when he had ‘meltdowns’ and frightened the other children repeatedly in his gymnastics class, birthday parties and a number of other places? I don’t think so. Keep in mind that Autism Awareness/Acceptance was not even an idea back then. There was next to no information, guidance or support. We were pretty much on our own. IPads? We barely had the internet.

I could go on and on…….. and on…and on… but I won’t.

Why are we not allowed to celebrate the accomplishments? Why should I be made to feel as though I should apologize that he is a happy guy?

Don’t get me wrong, I am not complaining about any of the work. This boy has worked just as hard if not harder than me. I am quite positive that many people are in the same boat and we will be in this boat together forever. Everyone has their challenges and we should respect those challenges, even if the challenges are not visible.  We can’t just take everything at face value.

DC is 24 years old. He is a happy guy.  He has a good life. He is the joy of my life. But even with all that he has accomplished the bottom line is, he will never be able to live on his own without full support. He will never be able to take care of himself. He does not understand safety. He does not understand many many things. He has no siblings.

 Even though his father and I have taken steps to be sure he is provided for, and have designated guardians in the event that anything should happen to both of us, those people are all my age or close to it. He will long out live all of us and realistically I should be looking at people his age, but I really do not have any options in that age group – again,  he doesn’t have  brothers or sisters. He will probably have to live in some sort of group home type environment with strangers and no one to look out for him. Dependent on strangers. At the mercy of strangers. This is devastating to me. It is what keeps me awake at night.

It breaks my heart already.

He deserves to live the rest his life just as happily as he lives now; and that is the one thing I can not promise him.

How lucky is that?

**** I have written and rewritten this post many times over the last few months attempting to reduce the high on the  hostility meter to at least a mid-level reading. I hope I was successful. 


Sunday, March 13, 2016

In Search of Stars Hollow

#TravelingWithDC

Just a little quirky trip to celebrate my birthday....

 ~ Leonard Nimoy

Join us as we go 'In Search of" Stars Hollow: (see what I did there?)






While show-runner Amy Sherman-Palladino was staying at the The Mayflower Grace on vacation, she fell madly in love with Connecticut. For two days she drove through various towns and began conceiving the fictional Stars Hollow, a fairy-tale town, grounded in actual, real places. Roadtrippers

Washington Depot, CT





And a little poem in the woods -
for DC - a bookstore...



Onward to Kent CT.



Home of the Giant Ball of Metal Letters? Quirky enough for you?




and Kent Falls





For DC - another book store and some ice cream..


Moving on to New Milford which happens to be the site of the 2016 Gilmore Girls Fan Fest in October (that I found out about too late to get tickets - UGH!)







Speaking of Quirky - when someone is willing to decorate their yard with giant heads, I will always be willing to take a few pictures.