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.

Hall Lurking at it's best

Today, like many days, I got up and rounded up the kids, sent them off to school, and went to my second job, that of "Hall Mom" or "Helicopter Mom" at Jack's school. It's a thankless, self appointed position, and the pay is lousy. Hanging out at my child's school is the only way I can really know what is going on in Special Ed. Most years I don't have to do that, because in the past I have known someone that works at my child's school, who tells me everything, or the teachers are good about communicating to parents. This year I don't have either of those luxuries, the ones I took for granted when he was in Elementary. The Junior High teachers do not send any information home about Jack's day, and I don't know any of the Aides well enough, that they would call me. So that leads me to the lonely life of a hall lurker.

I am happy to do my duty and once in awhile it really pays off to be available. For instance, today I ran into the Director of Special Education for our school district. She had come to visit our Junior High because she had gotten wind of the problems.

Rewind several weeks...On a Friday about a month ago, I was on the front lawn of a good friends house, visiting with several prayerful women. I shared with them my concerns about Jack's situation at school. I explained that I did not know any other parents of special needs children at this new school and really missed having allies at this school. After asking for them to keep this in their prayers, we went our separate ways, to run our mom errands like we usually do, frantically trying to get everything done before the weekend hit.

Two hours later that same day, I received an email from a parent, someone I had never met, about a parent meeting taking place concerning Special Education at the Junior High level. The meeting was that same night, so I scrambled around making arrangements so that I could be there. By 7pm on that same day, I was sitting in a living room with half a dozen other parents concerned about what was going on in Special Education in our city. You can imagine my surprise to find out that the home we were meeting in was a family with a child who had just started going to the same school as Jack!. Since I don't believe in coincidences, I began to get goosebumps, knowing that the prayers of my fabulous friends were already at work.

But that's not the end of the story...After the meeting we were to each get an employee from our school district to recommend us to be on a Special Education Advisory Committee that was being put together to give input to the Director of Special Education, the Superintendent and the Board of Trustees for our ISD. I was excited, so the next day I called up a woman that I had known for along time, who was an employee of the ISD and asked her for a recommendation to this committee. She laughed and said, "I put your name in for that committee 10 days ago!"

I am reminded of Deuteronomy 31:8

The Lord himself goes before you, he will not leave you or forsake you. Do not be afraid; do not be discouraged.

The Special Education Advisory Committee met for the first time last night, and that is where I met the Director of Special Education for the first time. I ran in to her again at Jack's school today, so I am anxious to see what God has planned.

For a lifetime

ARD stands for Admission, Review, and Dismissal. It's as simple acronym that doesn't begin to convey the importance of the event. Parents of children with special needs do not typically look forward to an ARD, and I don't believe teachers do either. In our school district there is an unspoken, yet very present tension between parents and teachers during the ARD process. Teachers know that parents will be asking for things that the school district does not have the money to implement, and parents are feeling that the school district should live up to their expectations of providing an adequate education in the least restrictive environment for their child with special needs. Through a parents eyes: the school district has received money to educate a child with special needs, and when parents ask for services for their children, the powers that be, water down speech therapy, by having it in group sessions, dilute Occupational Therapy by authorizing only an OT consult, and expect the teacher to provide the Occupational Therapy as needed during the course of the day. The teachers have enough to do, please, with all the extra discipline problems that children with special needs have, they're never going to get around to helping a kid, on the one-on-one basis that is needed for a child to improve in any of these critical areas. Deep down you know that these educated people realize this simple fact, they are not providing services in quantities needed to help children in the special ed system. The children that continue to improve and do well, are the children who's parents bridge the gap with services that they pay for privately, out of their own pocket, because they know their child needs the help. While many good and well meaning teachers work hard to do their very best for their students, it is the parents who have the most at stake. Teachers only have these special kids for a time, parents have them for a lifetime.

Where does the buck stop?

It's one thing to have knowledge about an issue that requires change, and quite another to carry it out. I might call it procrastination, others may say it's dodging an issue, or not accepting responsibility. I really admire a person who can say, the "buck stops here". After school yesterday, the Vice Principal at Jacks school called me. I appreciate her following up with our meeting on Friday, and I hope that my concerns, observations, and requests will produce positive changes at Jack's school. She wanted to tell me that she forwarded my letter to the Director of Special Education for our school district. I was a little disappointed, because I had hoped she would be able to make the changes needed at her level. In our school district they have what's called Site Based Management. That's fancy wording for, "we get to decide how we run our own school". So for my comments to be forwarded up the chain of command, means that for some reason the V.P. feels like it is out of her hands. Don't get me wrong, I think this V.P. has the ability to get more things changed for good in the realm of special education than the previous person in her position. I also think that she agrees with me that things could be better. I am increasingly aware of one fact, they think it's all about money, and that may very well be part of it, but that's not all of it. I think the other part of this problem is a lack of educational resources, training, and knowledge of teaching tools and methods that work in the classroom. Especially their reluctance to use Applied Behavior Analysis and Discrete Trial Training in their teaching bag of tricks. I'm also wondering when was the last time anyone from our school district wandered out side the walls of our little town, to explore the great unknown territories of other special education departments that are doing great things for their students. We don't need to reinvent the wheel here, we just need to come on out of the dark ages and join the rank and file of those who are doing wonderful things with kids who have special needs.

A fly on the wall

You know it's bad when the Vice Principal agrees with you...Yes, I went to the office Friday. I actually made an appointment. I hadn't intended for it to be a long conference, I just wanted to touch base with the V.P and let her know I had some concerns. As an after thought, I sat down at the computer the morning before the conference, and quickly jotted down a few of my concerns. Two pages later, I decided I'd better stop, for practical purposes, because we'd never be able to cover all my observations and concerns in just one meeting.

School has been underway for about 4 weeks and I have been lurking the halls and sitting in the classrooms, shocked at what I have witnessed. One problem with having a child with special needs, is the inability to quiz him about his day. So I have to be a presence in the classroom to find out what is happening in his day. And I will continue to do this until I feel things are running smoothly. Not all parents have that luxury, and I am thankful that I am able to do this.

One thing about being in the classroom often, is that after awhile, the teachers and aides forget that I'm not one of them...they forget that I'm there, I become a fly on the wall, and I get to see what life is like for these kids when no one is watching.

Including Jack

I'm starting a blog for Jack, my child with special needs. He has Down Syndrome and Autism and is a blessing to our family. Jack started Junior High last year and it has been a tough transition. This year has started off particularly rough, so I've decided to blog about his life, and his experience, through my eyes as we navigate the maze of Special Education. Join me on our journey and keep us in your prayers.