Difference

This video was made by Clara Sigmon, a 13 yr old, about her brother David, who has Down syndrome. It's called "Difference is an Artist's Game" - it is very powerful and well-written/spoken. I'm impressed that she is in 8th grade!

The Perfect Day Trip

Raising a child with special needs can be challenging at times. For instance, if we plan a family outing, I have to think through the whole event to trouble shoot any unforseen circumstances that would make it difficult for Jack to participate. He dosen't enjoy loud gym's or loud music. In crowds we have to put him into his wheel chair or he'll wander off. If we are planning to walk a long way such as visiting amusement parks, or the Mall, we load up his wheel chair, because nothings worse that trying to get this big boy up off the floor when he's tired of walking.

I've finally found the perfect outing for Jack. He get's to ride in the comfort of his own car, listen to his own tunes on the radio and he can't wander away. We went to a wildlife park this past weekend and had the best time. At the wildlife park we were able to get closer to the animals than we would at any zoo. The animals came right up to the car and they would eat right out of our hand.

About halfway through the drive they had a gift shop, restaurant and picnic area. We stopped, shopped, ate and stretched our legs before heading back down the mountain to tour the rest of the wildlife park. This place gets five stars from me.

My Pew, Mine, Mine, Mine

Ever felt like New Years resolutions are made under duress. I make them because, I know everyone is making them and I'm suppose to make a New Years resolution, when actually, I know that I'll break my new years resolution once the year really gets underway, because I always do what I've always done and it's as simple as that! So to keep myself honest, I will resolve to not make a resolution this year (snicker).

New Years resolutions would be something out of the ordinary for me, because when it comes to doing something out of the ordinary it just doesn't happen often in our family, Jack, would never go for it, and there are times when everything revolves around Jack.

Mothers of special needs kids know what I'm talking about. For instance, at church we always sit in the same pew. Now I know that a lot of people tend to do that, but Jack insists on sitting in "literally" the same spot no matter what. One time, some visitors sat in Jack's spot, so Jack sat right down next to them, invading their personal space I might add, and it made them so uncomfortable that they got up and moved. Luckily they weren't offended and thought it was funny, but I was not amused.
I spent the next 5 minutes fussing at him in a whisper about how to behave, and of course it went in one ear and out the other. I could tell he wasn't listening to a word I said, because after I had finished my lecture on behavior, he just looked at me like I was crazy, pointed to the bag of cheerios and signed "more".

Going to church is a challenge for our family. Some churches have ministries for people with special needs, but our church does not, and I don't feel led to start one up. Maybe I'd be the perfect person to do it, if I didn't have a special need myself (named Jack). I just don't think I could fit it in with all the other stuff I do for him. Our big problem is that Jack is too old for the children's Sunday School classes but doesn't fit in with the youth program. The Youth Group will be great for my other kids when they get to Junior High, but Jack doesn't socialize or read/write at that level. He'd enjoy the nursery class if the high chairs weren't too small. So we take the other kids to Sunday School and my husband and I take turns sitting with Jack in the sanctuary while the other goes to class(it's also why Jack gets to sit in the same spot every week). As a result my husband and I never go to class together, and haven't for years and I miss that. We tried taking Jack to class with us, but he doesn't like to do that and forcing him to do something in a public setting that he doesn't want to do well...I just don't want to go there, plus I hate it when he misbehaves at church.

I asked a friend of mine who also has a child with special needs, how they handled Sunday school and church activities. She tells me that they have the same problem, of what to do with their child concerning Sunday School and church. So if you have found this blog and you also have a child with special needs and you don't know how to get connected in to your church, never fear, you are not alone, but I don't have any answers for you. I have something better, this promise:

"The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged." Deuteronomy 31:8

Than Goodness for Rubber Chickens

Including Jack can be difficult. Jack is sometime uncooperative. Anyone with children can relate to that, but if you have a child with special needs, you realize that I am painting a nice picture by using the word uncooperative. When he was little I used to be able to pick him up and carry him on my hip if he pitched a fit and refused to budge. Back then all I had to deal with was the disapproving looks of strangers, thinking that I had a spoiled kid on my hands, and not the autistic child that he was, sensitive to lights and sounds that would set him off and make him cry. At 14, lifting Jack is like trying to dislodge a bolder from the ground. There's no moving him if he's made up his mind he's gonna sit.

When he was eight, our family went to my daughters dance recital. My husband dropped my daughter, Jack the baby and me, off near the building where we were headed because the parking lot was full and the only spots required a long walk. Jack decided that he didn't want to go into the building and so he sat right down in the middle of the parking lot. As all eyes turned towards us, Jack began his usual commotion. My 5 year old daughter, all dressed up in her cute little tutu, looked up at me and doled out the obvious observation, "Maybe we shouldn't have brought him ". She was right, and I wished I had gotten a sitter, but alas, I was relegated to listening to advice from my 5 year old that I wish I had figured out earlier.

Jack still has cooperation issues today, but we've all gotten smarter. Sometimes, Jack just doesn't get to go certain places if I know ahead of time that it will be difficult for him to cope in certain surroundings. We've also learned what motivates Jack to behave.

Jack rides the bus to school everyday, and the bus driver, God bless him, related a funny story to me. The other day the teacher came out the get the kids off of the bus at school, and Jack wouldn't budge. So she picked up her walkie talkie and called for backup. The bus driver had a laugh, because she called the other teacher to bring out the "Emergency Rubber Chicken". Apparently Jack got the rubber chicken and happily exited the bus to begin his day of school.

The Hard Places

Advocating for a child with special needs can be a consuming undertaking. Taking care of aging parents, young children, and difficulties of every kind can drain the fun right out of a person. I've decided to post someone else's words today, because they came to me at such an appropriate time. Here's what came to me through a friend, and I'd like to share it with you:

The Value of Hard Places
by Os Hillman

So then, death is at work in us, but life is at work in you. - 2 Corinthians 4:12

Being forced into hard places gives us a whole new perspective on life. Things we once valued no longer hold the same value. Small things become big things, and what we once thought big no longer holds such importance.

These hard places allow us to identify with the sufferings of others. It keeps us from having a shallow view of the hardships of others and allows us to truly identify with them. Those who speak of such trials from no experience often judge others who have had such hardship. It is a superficiality of Christian experience that often permeates shallow believers.

Those who have walked in hard places immediately have a kinship with others who have walked there also. They do not need to explain; they merely look at one another with mutual respect and admiration for their common experience. They know that death has worked a special thing in them. This death leads to life in others because of the hard places God has taken them through.

It is impossible to appreciate any valley experience while you are in it. However, once you have reached the top of the mountain, you are able to appreciate what terrain you have passed through. You marvel at what you were able to walk through. The valley of the shadow of death has yielded more than you ever thought possible. You are able to appreciate the beauty of the experience and lay aside the sorrow and pain it may have produced.

Death works in you for a greater purpose. If you are there today, be assured that God is producing something of much greater value than you will ever know.

May God's blessing be with you today!

Oh, to be Happily Oblivious

I have another Special Education Advisory Committee Meeting tomorrow. The last one seemed to get bogged down in a lot of nonsense discussion. However, I am hopeful that all the committee members will learn from our experiences and begin to move forward in a unified direction instead of getting stuck like we did two weeks ago. The Director of Special Education has cultivated a defensive attitude among the parents of children in the special education department, that has been characteristic of her regime. I don't think at this point any "good will" on her part can repair the image that she has created. Furthermore, I am doubtful that she has any inclination to do anything different than what she has been doing previously. That leaves the special ed parent community to figure out how to work with the situation at hand, and how to work with each other. (She has us right where she wants us!) At least that's what I'm thinking. She won't have to make any changes in her policy if she can get the parents on the advisory committee bogged down in nonsense discussions.

Luckily, Jack is happily oblivious to the valiant efforts on his behalf. According to him, the world is as it should be.

The last to know

Our ISD now has an Advisory Committee dedicated to Special Education. The Special Ed Advisory Committee has met several times, officially twice. I am hoping it will prove to be a positive force in our school district, even though its track record does not tell that tale. (It has been a committee on paper only, no members, until this month). The Director of Special Ed has been the person responsible for getting this committee together each year, and I guess she had decided it wasn't needed, until a parent found out that our district used to have a committee, but that it had dissolved. These parents, me included, began meeting together unofficially, until the Director of Special Ed got an invitation to attend our Special Ed Advisory Committee Meeting. I guess she woke up, shook her head, looked around and decided she'd better take the reins of this rogue parent organization before it got out of hand. She promptly called an official meeting three days after our 3rd "unofficial" meeting. Instead of ignoring her, we all went to her meeting as well. I did think it was a little stinky on her part to do that, and not attend the meeting that we had invited her to attend.
Our district has the reputation for being difficult, unbending, and uncooperative when it comes to making changes, especially in the area of special education. (My position that our ISD was difficult, was affirmed during the meeting date snafu). The parents know the administrator's are stinkers, the surrounding school districts know this, educator's teaching in private schools in our town know this. The only people who don't seem to know this are the administrators and the director of special education of our ISD. I guess the stinkers are always last to know that they're stinkers.