Secrets, Surprises, a Little Bit of Faith and Pizza…………

Posted by TakingItAStepAtATime

This past February all of the Winter Guard parents were asked to contribute a short story or memory about our Winter Guard Director. She would be celebrating her “-Mumble, mumble -th” Birthday in March. Her son wanted to put together a book of memories for her.

DC has been a participant with this special needs Winter Guard team for 6 or 7 years. He really loves it, even though at first he had a really tough time focusing and rarely did anything close to the moves that everyone else was doing. He didn’t care. He wanted to wave his flag. He has improved very much over the years and still enjoys participating. He loves the performances most of all. He loves the attention – he loves the applause. He is the only one to take a bow while the rest of the team is in the “end of performance” pose. (I am sure there is a proper and official name for that, but “end of performance pose” is the best I can do)

I wrote up my memory, DC drew a picture and we sent it along to the director’s son. Had I been really thinking, I would not have told DC about the birthday. It was still 3 weeks away and DC is always very excited about birthdays. DC also does not understand “surprise” or “secret”.

A secret, is DC whispering in a raspy voice louder than his already very loud voice.

A secret is pizza for breakfast.

There are times, not often, but there are times, when we have left-over pizza in the house. When there is left over pizza, DC loves to have it for breakfast. This happens all of once every couple of months, but I know my son. If anyone were to ask him what he had for breakfast, he will answer pizza. If someone should ask him the next day, he will answer “pizza”, not because he had it again, but because 1) That is what he would have wanted to have 2) It becomes a standard answer because he is tired of answering questions 3) That was his favorite breakfast that week so that’s his answer and he is sticking with it.

Not wanting people to think I give him pizza every morning, we decided to call it “Secret Breakfast”. Well…. as I said, DC doesn’t understand the concept of a secret, so anytime we go out with friends for pizza, or we are at a party where pizza is being served, he always asks for “Secret Breakfast” – then I have to explain what “Secret Breakfast” is to my friends or other parents, (because of course, they ask – wouldn’t you?) completely defeating the purpose of the secret part of “Secret Breakfast”. At this point “Secret Breakfast” is just something we call pizza, people now just ask him if he wants to take some home for “Secret Breakfast”, and yes, they also call it “Secret Breakfast” when they offer.

A surprise pretty much runs along the same lines as a secret. If we buy a gift, and I tell him not to say anything because it is a surprise, the very first thing he will do when he sees the person that we bought the gift for is:

– Go over to that person, point at them and says (to me) “Don’t tell anyone, surprise, shhh” and many times he will even tell me what the surprise is. I suppose because he is addressing me and not the person, he thinks he is not giving it all away.

Knowing all of this, I should have realized that the next time we went to Winter Guard practice, he would ask about Mrs. F’s birthday. It was still two weeks away. I was worried that if he mentioned it in front of her, she would know that something was in the works. There would be no reason for DC to know that her birthday was coming. I reminded him over and over and held my breath for the next two weeks. Fortunately he did not give it away, not for lack of trying though – he did mention it a number of times at practice but luckily she was not close enough to hear it.

I saved the story to post at a later date, after her birthday. My mind, being the steel trap that it is, filed it and forgot to post it.

We were out tonight for pizza with DC and his friends when DC asked for Secret Breakfast and I remembered the post – because this is the way my mind works.

Here is the “Little Bit of Faith” portion of this post.

Happy very belated Birthday, “Mrs. F”!

The one event that always sticks out in my mind is the High School Ice Cream Social performance in 2011. The performance was a last-minute addition to the Team’s schedule. Being so last-minute, many of the Buddies were not available to perform with our children.

The Team had never rehearsed, never mind performed without their Buddies before, so this was something totally out of their comfort zone. But there we were anyway, with 3 buddies. Mrs. F. had faith that they would be able to do this. I am not sure that many of the parents had as much faith, but Mrs. F. did.

There was a little bit of time to do a few quick rehearsals before the show but as I said, this was a very new experience for them – a few quick rehearsals without their buddies would be like starting from scratch. Mrs. F. gave them a pep talk before and after each run-though and made it very clear to all of them that they could do this!

She gathered them around for one more pep talk before they went out to perform. She believed in them so they believed in themselves. They knew they could do this!

And they DID! The show went off without a hitch. They gave a fabulous performance! How proud they were to be able to do this without help! Mrs. F. had faith and in turn, so did the Team (and the parents)…… All it took was a little bit of faith…….. And THANK YOU for the faith you have in, and the encouragement you give to our children!

There is no one better! Thank you for everything you do……..

Don’t Judge What You Don’t Understand

Posted by TakingItAStepAtATime

There is a convenience store in our town that my son and I stop in pretty regularly. The employees are very nice to him. One in particular seems to be very interested in him and his diagnosis and really goes out of his way to try to talk with him.

A few weeks back, there weren’t many customers so he began asking questions about him. I never mind when people ask questions; I’d rather they ask than stare or shy away from him.

One thing led to another and he began to tell me that they do not have the system that we have in his country. In his country the families take care of their disabled children. He proceeded to say (which I’m sure he thought was a compliment) that I take care of my son, but other customers who come in with disabled children and adults ask for receipts for what they are buying.

I really didn’t understand at first what one thing had to do with the other but he explained – “I ask them why they need a receipt and they tell me it is for the child/adult’s father or some company”.

In the first place, why would he ask anyone why they needed a receipt? And then why would anyone feel obligated to answer that question?

He proceeded to tell me again that, in his country, the families take care of their own children. He automatically made the assumption that if someone else is with your child, a staff person, or a person from a group home that the parents are not taking care of their own children!

Immediately the pointing finger came out (I really have to learn to control the “finger wagging”) and I said “Oh, no. Do not judge people because someone else happens to be with their child at that time!”

I tried to explain to him that, in my case, my son has been with me and I have done just about everything for him all of his life but now I too have staff people with him a couple of hours every day after he gets home from work because he needs to learn to be independent from me. I don’t like it at all, but I know it’s the best thing for him. I’m always convinced that I am the biggest detriment to his independence.

Unfortunately, I didn’t get to finish my speech as customers were coming in and I could see that he was getting uncomfortable because he thought he’d offended me, which he did. When people make those kinds of assumptions whether it be about me or not, I DO take offence. I suppose I just could have let him believe that I was not one of those “awful” people pawning their child off on someone else; he would never know any different, but I just couldn’t let it go.

Partially, I think I react that way because I DO feel guilty when I am not with him. All I was looking for when all of this began was some type of program after school so I didn’t have to continue cutting my hours at work to make it home before he arrived from school. I’ve been a single mother for nearly 20 years, and I have to work; fulltime, always have, it’s only me supporting us. What I ended up with was staff hours for life skills, community, and activities. And yes, I know it’s the best thing for him, but after 3 years with this staff (they are wonderful, don’t get me wrong), I still feel guilty. His staff is only here from 3pm – 5pm, and then they accompany him to some night activities as well – activities that I would normally have taken him to. But, I feel like I’m being judged by people, my neighbors that weren’t living here all of the years that it was just me and just people in general who have no idea what this is all about, like the man in the store.

I wanted to ask the cashier just what happens to the children is his country when the families are gone or too old to take care of these children? They’ve been sheltered all of their lives, what becomes of them? How to they adjust to having no one? I don’t know anything about his country, I don’t even know what country he is from, but I feel that here, at least in this house, we are not trying to shelter our kids by just keeping them safe and out of the way and never learning or experiencing life, the best life they can have. I am hoping to help him become as independent as he can be and if that means letting someone else take the reins for a couple of hours a day, then that’s what I am going to do.

I know he’s not a bad person and I was sorry I made him feel uncomfortable, but I am really hoping to finish this conversation one day and hopefully make him see that he should not judge what he does not understand and maybe even change the way he perceives “these parents” (myself included)…… ……….