Friday, October 30, 2009

Pumpkin Walk

Halloween week is upon us. I say week because like many other holidays Halloween is spreading it's wings and lasting days and days. Yesterday Zachary's school had his school Halloween party, then later that evening was East Lansing annual "Pumpkin Walk".

The downtown business district in East Lansing graciously open their doors to the children. They dress up and hand out candy (and sometimes coupons along with the candy). The sidewalks are jammed with children and adults getting the jump on Halloween. You can't walk a few stores without seeing someone you know, chatting with the parents and complementing the kids costumes. It's fun. You see kids you know who aren't in your neighborhood. A local B and B does it up big and turns the whole thing into OZ complete with the yellow brick road and all the characters.

It is always on a Thursday, at least as long as we have been attending. Which makes it after Daniels regular Thursday swim. Our friends who we talk to all the time are also heading out to the same event after us, so Zachary and his friend Emma both have their costumes in tow. Therefore, photo ops are always in store. We decided that by the time they graduate from high school we'll have a wall of photos of them together in their costumes. (I'm kidding myself that this will continue forever you understand!) Here are Emma and Zach posing together. Emma was Michael Jackson and Zachary was an undead rocker...or "dead Slash" as I heard some people say.....

As you can see, Zachary fully embraces Halloween. He goes for costumes that are the complete opposite of him. He really really gets into it....

After swimming we went to the Pumpkin walk. Daniel dressed into his costume. He LOVES his costume this year. After years of Daniel refusing to put on costumes, refusing to ring door bells and say "trick or treat", the past few years he has progressively gotten into it. Here we are at age 13 and he is finally in full on Halloween mode. The fact that he was taller and bigger than 95% of the people handing out the candy, means nothing to him. He is in his GLORY. It is fun to watch. I mean really fun to watch.

The little little kids who were out last night, would look up at Daniel and be in awe. They thought he was a "real" clown. They'd say, "mommy look at the clown, hi clown, wave at me clown!" "Shake my hand clown" and my favorite, "can I honk your nose?" Daniel and I were sitting on a bench at the end of the night. We were tired and waiting for my husband to come out of one of our favorite restaurants with food to go. A little boy say us and was giggling up a storm. He was circling us and asked if he could grab Daniel's nose. Daniel says, "look it honks" and Daniel honked it. (HE LOVES THIS FEATURE) then the boy asked if he could and Daniel leaned forward so he could. He made that kids day. And they both made mine. He somehow came alive socially under that clown costume. Here he is on the bench. It was really something. He usually does well with 3 and 4 year olds since really, they have a lot in common. Daniel still enjoys a lot of the same things as kids that age and they think it's amazing this giant person enjoys it.

It was really an amazing night. We were all exhausted. Thankfully, the school had today off. The boys slept in until 9:30 (YAHOO FOR ME!) and got rested up. After all, tomorrow we get to dress up and do it all again! But this time. . . he says he wants his face painted. . . we'll see how that goes! That would be another first for Daniel, but he's determined, so somehow I think he'll do it. He's already told me he will have a white face, red smile and blue triangle on his eyes....the kid has vision!

Thursday, October 22, 2009

A new frontier

I have eluded to resumes and jobs on this blog. It is something that I wondered if I'd ever be able to do again. The problem, as any parent of a child with special needs knows, is that we are "on call" 24/7. Occasionally I'd think, "maybe I can start to look for something very part time", just this thought process would set of a chain of events that would bring everything crashing down around me. The universe telling me, "not right now".

A few years ago I allowed the thought in my head and within two hours I was sitting in the principals office of Daniel's 5/6 building. They had called me because they were unable to calm him. I don't remember the circumstances, but I do remember sitting there, texting my husband with tears running down my face.

Am I someone who needs to "work"? No. Actually let me correct myself. I work my ass off. All the time. I'm very very good at what I do. How about have something of my own and get PAID for it? From here on out, it will be "get paid"! No I'm actually pretty content doing an excellent job at home. Keeping on top of Daniel's school, being able to be proactive instead of reacting to problems. Keeping our house in acceptable conditions. This is what I do and have done for 12 years, almost to the day. After I had Daniel, I went back to work for 9 months. At his first birthday I quit. I was working full time, living in the Detroit area. I'd drop him off at day care early and pick him up late. It killed me. I quit and said we'd figure it out, which we did. I can't believe that was 12 years ago. I remember coming home after a long day of work and having Daniel open his 1st birthday presents. Two days ago I sat here and watched him open his presents for his 13th birthday. The fact that 12 years have rushed by me is astounding. I know everybody says that, but it's because it is true.

Let me rewind how I have come to this place. Over the years here I have become very involved. I am part of our Special Ed Parents Organization. For them I sit on our school district wide parent council. I am the voice of the special needs kids. I'm on my third year of this. It has allowed me to get to know school board members, and the superintendent. They have said to me, that just my presence there helps them to think of an issue in a different way, one that involves "our" kids. That makes me proud. I hope that my time and input has helped shape the way our district makes decisions. After I started blogging more last fall, a mom in our district was reading it regularly. I knew her, as Zachary and her oldest are the same age and have played on sports teams together. We didn't know each other well. Our relationship grew and one day she said, "you do amazing things and need to get paid for it". I thought, yeah right. Eventually, through her, I became a part of a group that meets for the Michigan Family to Family Health Information and Education Center (F2FHIEC) (that is a mouthful) I was brought on to help spread the word to my contacts about the wonderful services they have to offer special needs kids and families. They paid me a stipend for my time. It's only once a month, but it was nice to get a check for my time in a meeting!

This same friend then told me she heard of a job at the ARC of Michigan, a State organization for developmental disabilities. They received a grand to hire parent mentors throughout Michigan. Jodi, (said friend) was in a meeting and told them she had their Lansing person. I wrote out a resume and sent it in. In the meantime I was at a different meeting and someone approached me and said exactly what Jodi had said to me months earlier,

"do you get paid for what you do?" She asked.

and I answered "no".

"do you want to?".

"yes, if it works for my family". I answered.

That's the kicker right? I didn't think I'd be able to find something that I could work in. The person who approached me from this meeting worked for UCP (United Cerebral Palsy). They were looking for an advocate. The advocate is not just for CP it is for all disabilities. It is a very limited job. 8.5 hours per week on average. I thought it sounded like a great way to test things out. I interviewed and was offered the job. But meanwhile the Arc job is still out there. I have an interview next week with them. I was very torn about this because I really wanted to hear what they had to say. This job is 20 hours a week and is a Parent Mentor position. Helping families learn the ropes. Training them to be proactive, if need be referring them to an advocate (the other job I accepted). Then an amazing thing happened. When UCP offered me the job they said they really wanted me, but they knew my resume was in at the ARC. They gave me their blessing to interview there and if I decided it was a better fit, gave me their blessing to take it with no hard feelings. But they wanted me for as long as they could have me. What an amazing offer! It took away my stress. I really didn't want to commit to one then immediately look at another job. I don't work that way. I commit to something and stick to it.

So currently I am an advocate for UCP. I have an interview next week. Daniel just turned 13, I just celebrated my 20 year anniversary. I've been waiting for the other shoe to drop. The only thing that happened is Zachary's school is closed for the next 2 days from Swine flu. He is currently well. It's an exciting time for me. It's nice to know those years of going to meetings for "free" and working so hard ended up creating a really nice little resume. After not working for 12 years I was told I had "tons of experience as an advocate". I'm proud of that. It's amazing to be recognized for what you've done. My brain is still trying to catch up to all of this. But I am very thankful for the opportunities that have come my way. It is exciting to think that all I have learned can be put to use to help other families. It will also be exciting to get a small but consistent check every other week!

Times are changing in the Sneathen household. I think it will be for the better.

Monday, October 5, 2009

Lands End Pants

I have written before of my love of Lands End pants. Styles similar to this.

I have about 10 pair, of this style of pant in a 16 husky. They are perfect for kids like Daniel for the following reasons:

1. The fabric is nice, not rough, not scratchy.
2. They don't have buttons, but they look really nice. With a decent shirt untucked you would never know that they are elastic waist.
3. For kids who are wider (or slimmer) they come in husky or slim.
4. They are exceptional quality.

There are probably many more reasons. But this is enough of list isn't it? These pants, while expensive have really been a wonderful thing for us. Daniel is unfortunately in the largest size right now; 20 H. Therefore my mind is in problem solving mode of what the heck do I do next?

The reason I am posting this is I am boxing up things to give to charity. It occured to me that someone who lives with a child with special needs may really really need something like this about now. So here is my deal. If this size works for you or someone you know and you are the first to take dibs, I will send these to you. The only cost on your part will be to pay for shipping. Once you give me the address, I'll get an estimate and see if it's agreed upon. Then I'll send them off with only the cost of shipping to you.

I would rather have these go to someone I "know" who may need them. Any takers?