I remember when he was a baby he wanted to move around in his world so badly. In his own way he learned to walk, he would push up on his hands and legs. This crab walk served him well for almost two years till he graduated to the upright position. Since his trunk muscle’s could not hold him up, he made a version that would work for him and excelled at it. Brian also struggled with verbal speech, so much so that his talking could not be understood, so he would naturally get frustrated with me and me with him. Together we came up with a system that worked. I put up picture/word cards with velcro attached to the back all over the house so that he could bring me the card to show me what he wanted or needed.
The earliest idea for inclusion occurred when Brian turned two. We decided that he needed to attend a regular preschool/daycare. We had a great early intervention teacher who came into our home on a weekly basis giving me idea’s, techniques and suggestions. So when the idea of preschool came up and was discussed we decided that she would attend two morning sessions a week with Brian at Masonic Child Development Center, our local daycare. Brian really enjoyed being with other children and we found that his skills were very much age appropriate, except for his spoken language. It was then that we first introduced sign language to Brian and all of his classmates. Like most skills early on, he was like a sponge and soaked it up. All the children would be signing and saying more, please, and thank you during the snack, circle time, etc. A lot of Brian’s frustration was lifted and he really enjoyed his new language and friends.
I truly believed that total inclusion with typical peers, using good language and play skills with the proper supports in place, was all that Brian needed to succeed for those early preschool years. So I was very pessimistic of the special need’s program that the local school system wanted him to attend once he turned three years old. I went and viewed the elementary school-based program and was not impressed. All of the children had some kind of special need, but that was not the problem. The problem I had was not even how well behaved or quiet they were, well maybe it was. I had trouble understanding how Brian was going to learn to talk if all of his role models are nonverbal also. Or how was Brian going to learn how to share if all the other children are solitary players also. Since it has been an early role of mine to advocate for Brian, I put that into full force and challenged the school to leave him in his preschool and provide the supports necessary. I would ask them, "Where is there a better place to teach speech except where language is all around him?", that would go for sliding, bikes riding, swinging, building, play doe, dress ups, etc. Brian is such a social person and he really enjoys being part of and copying those around him. I am grateful for those first three years in preschool and it helped prepare me for the first of many transitions Brian and I would have to face. When he did transition to the elementary school, I believed he was ready socially and emotionally for the change. The school had rebuilt their program to include a one to four ratio of special needs to regular ed classmates. I was excited for Brian to be in regular school and felt this would prepare him for the atmosphere of kindergarten. One of the many benefits that I remember is Brian receiving an augmentative evaluation for speech and getting a talking device called a "Cheap Talk Eight" once he entered the regular education system. This enabled us to take his picture velcro system and put words/sounds to it. He could carry it around the classroom or the house and it helped him express his needs and wants. Brian really blossomed when he was given the ability to express his wants and needs in a healthy way. The tantrums, biting and disruptive behaviors were cut way down, and he enjoyed school and home life more.
It has been a process for me to overcome my belief system that I was brought up with. I remember being in high school and kids like Brian had their own classroom. Sometimes I’d see them walk down the hall as a group and all the kids would either tease them or look away. This motivated me to want more for Brian, so I fight hard to have him included, in part teaching his peers from an early age not to be afraid of him. Hopefully they will appreciate the gifts he has to offer, his unconditional love and concern for them, his family and community.
Brian started in regular kindergarten at six years old and had a great teacher and aide who made it a successful year. Though our struggles had only just begun in the area of inclusion, because of his strong needs. The biggest and hardest obstacle for Brian to overcome is his speech delay. We stopped using his communication device and kept some simple signs, but he would shut down when his needs weren’t getting met. He would struggle for so long to get his point across and express his thoughts, but eventually he’d give up and I’d lose a little piece of my boy. Brian moved up to a first/second grade combination the next year and we were again blessed with a teacher and support team who have a lot of patience and love. They also had a lot of creative ideas for including him and using his best talents. Brian is a creature of routine and he works best with no surprises. His team at school modifies his curriculum and attends workshops to be the best at their role as possible. We all attended a workshop on teaching him to read and his speech therapist will go to all ends to meet his needs in this critical area.
Although we all do our best we found this year it wasn’t enough, we needed an expert in the field of inclusion and behavior to come in and help us. Brian had started to act out in ways that we didn’t approve of so we decided to seek assistance. Actually it was a suggestion we received during his tri-annual evaluation, along with more help for Brian with his communication abilities.
I was asked to write down where I’d like to see Brian in five years. I was looking forward to meeting with this specialist and was hopeful that Brian’s many bad days would start to turn around. The first thing we did at our meeting was to chart out Brian’s normal day at school and look at a few major components. The first was the curriculum and the question of whether it was appropriate? The second was language skills needed and are his appropriate? The third was what is the social make up of the group and is it appropriate. I have always been an active participant in all of Brian’s IEPs but never approached one quite this way, without all the mumbo jumbo of an IEP, very open, direct and honest. I also learned that my ideas of inclusion must change if I want to keep Brian’s needs ahead of mine. I quickly saw that Brian’s negative behavior in school and in our home is so much about us wanting to control him and him not being able to share his feelings, wants or desires regarding that situation. Not only that but his not comprehending the Why of the tasks we’re asking him to do. As most parents and teachers understand all children at all ages want to know Why?, they must have this desire to know why or that child will not do the task at hand. In school I believe as a general rule, kids want to learn to read and write, the motivation varies in a lot of ways, from wanting to please a parent/teacher, to viewing it as a way out of an unhappy place, to seeing the rewards of not needing someone or something, the elusive independence. I found that for Brian the motivation had to be the direct link to him learning. When he was little, I could make up a funny song and eventually he’d join in the game and do the task at hand, such as brushing his teeth, cleaning up, getting dressed for bed or going outside. To an extent this will still work, he loves all music, so this is a motivator for Brian. When we outlined his day, it became clear that he enjoys full inclusion with the tasks that he comprehended and liked.
At 8:00 a.m. each day starts with drawing, this got an OK on all three points, one day a week Brian had Music, this got an OK on all three points. We quickly found that the rest of his week needed work. He may be in the classroom but he is doing separate work, with his assistant, otherwise known as geographical inclusion. It is not necessarily a bad thing, just a new eye opener for Mom as to what inclusion is and means. When the teacher spoke and gave instructions to the classroom Brian would go off into space, you could tell he was there but not in focus. So we began as a group to ask How does Brian ask Why? How can his voice be heard? What good is including him in the classroom space if he is not a "part of?" These questions are hard, some of the team started to feel hurt, but we tried to keep the focus on how can we do it differently. What can we do to help this nine-year old boy, with limited speech, be and feel a real part of and gain the ability to ask Why?
Our time together as a group was running out and it seems to be the one thing there is never enough of when we meet. We quickly made a list of "must haves" for each part of Brian’s program and day 1) Hands on 2) role defined 3) routine 4) in context 5) physically well 6) high tech 7) social 8) not too distracting. This simplified list might actually sound easy but it is far from it. Then I shared with the group where I’d like to see Brian in five years and that he should be fully independent of adult supports with each item, verbally and physically. They are as follows, not in order by importance 1) Computer 2) dressing/bathing 3) verbal 4) a sport or social club 5) knowledge of his phone, grade, address...... At this point the energy was flowing and an idea emerged on how all members of his team could partake in devising a Life Skills program to include in his regular curriculum a more meaningful way. He enjoys food, so each team member could take part of planning a snack, when they worked with him they would have a role to play in this event. First he could make up the list (computer) of supplies he’d need, next, he’d have to ask his classmates questions (regarding their order), from sentences written up ahead of time for him (verbal & social). Later he would have to count the orders (math) and eventually go to the store, ask questions and pay for things (following directions) and so on. The main points we found are that he would understand the Why?, so his motivation and comprehension are present. All of this sounds simple and it could be, once all the players have their roles defined and the original output of time has taken place. Then daily communication needs to take place and it should not all fall onto the assistant or special educator’s shoulders. I could see my role as Mom, facilitating communication on how the project is going, counting days on the calendar or charting items for him to bring to school.
I have found all along this journey with Brian that the quickest end to a great idea is lack of time. Time to plan, write sentences, communicate between all team members, plot, chart, discuss, brain storm and so on. So I need to remind myself what motivates all of us, for me it’s, unconditional love and respect for Brian, knowing that I need to know what’s going on in his head or I’m liable to miss out on some really good stuff. He deserves the best and since he always gives his best, should I do any less ? I do not like to push his educational team too hard, I understand their case loads are too huge and time is too short, but I was given a special little boy with Down Syndrome and it’s my job to advocate for him. Yes, inclusion has changed for me yet again, but the ground work has been done, his peers accept and love him unconditionally, in addition everyone wants to help him get the Why. I believe he is a great teacher for all of us, so lets not disappoint him by running out of time.
By Robin White
from Spring 2001 Newsletter
| Back
to Stories | View Current Newsletter
| (Click Site Map to
view older newsletters) | Parent to Parent Main Page
