Tag Archive | special needs

Autism – Unexpected Milestone

Disabilities do not diminish the capacity to love or be loved. I often think those who face the challenges that come with disabilities, can have a greater understanding of love and acceptance than those without them. Perhaps we are the disabled when it comes to matters of the heart . . .

This particular shoebox memory was written late into the night following an unexpected milestone in my son’s life.

He is a good man; he will always be a good man. I can see that so very clearly. His disabilities have become his abilities. They have helped form this perfection I see before me. I thank God for him. I can’t help wishing I could hold on to him forever, but now I think I can let go just a little.

I never doubted this day would come, but I wasn’t expecting it just yet. He lives in an autistic world of his own, right along the borders of mine. The world expects a social reciprocity he’s not yet able to fully give, the world expects certain behaviors and conformity he may never be able to grasp. It’s a world he is slowly beginning to explore.

When the time came, he wasn’t the nervous one, that was me. She wasn’t the nervous one either, that was her mother. He waited patiently while her mother unloaded the wheelchair and helped her buckle in. He noticed she hadn’t a jacket and made certain to let her mother know if she caught a chill he would gladly give her his.

We may have embarrassed them just a bit by taking the picture; you would have thought it was a prom instead of a date at the mall. Neither of them will ever go to a prom though, and this was not simply their first date together, it was the first date for both of them.

He is eighteen, she is sixteen I believe, I was so excited I neglected to ask. I had to fight back tears as I watched them reach the top of ramp and disappear into the mall. They were off to see a movie and have a bite to eat. They planned to take a picture in the photo booth. I wondered how they would work it out, her strapped in a wheelchair and he a bit on the awkward and clumsy side now and then. I prayed they would have fun. I prayed they would be safe.

I worried they would be treated unkindly by the cool kids we passed by as we left. He is very much the target on his own and I’m certain she’s had her fair share of the ugliness this world has to offer. It was my hope the two together would remove the proverbial target which tempts people to shoot nasty things their way.

It was a month to the day they first met. Both students in a program to help special needs kids . . . my apologies, young adults, find jobs and gain work experience. Life experience really. When she wheeled her way into the room the only one to make eye contact with her was the one boy who rarely makes eye contact with anyone My boy. He was seated at the end of the first row; she maneuvered her chair next to him, the best spot in the house.

He smiled at her, I’m not sure if she smiled back, I couldn’t see. She seemed to look around, as if trying to catch someone’s attention, perhaps simply to say hello. Most pretended they didn’t see, some just obviously ignored her. He noticed. He waited until she looked his way again and told her he thought her wheelchair was nice. I’m sure she smiled because I saw a smile light itself upon his face.

They began to talk, listening when it was time to listen, talking when it was time to talk. He was called to the front of the room to pick his job; he carefully maneuvered himself around her chair and lumbered up to the front of the room. He could hardly contain his excitement; he received the job he’d so badly wanted. He returned to his seat with twinkling eyes. Literally twinkling. She said she would like to work there too, he suggested she ask if there were any other positions available. She nodded her head and they said goodbye. “It was nice to meet you, maybe I’ll see you again sometime.” he said. She nodded, this time I did see her smile.

It was a toy store, the job he chose. He’d been working for three weeks when they met again. She’d requested a position at the toy store as he’d suggested. Neither knew they worked together until she missed a day of work and had to make it up with a different shift, his shift.

He wasn’t sure at first who asked who out; he later said he remembered it was she who suggested doing something together when the weekend came. He came home from work that evening and told me something strange had happened. I was almost alarmed, but by the look on his face the feeling turned quickly to curiosity. He said he met someone at work and, well, they sort of had a date.

I was more than a bit taken aback. Granted, he was eighteen years old, but I’d only recently begun processing the many emotions accompanying the achievements in life he’d recently made. He’d begun to ride the city bus on his own and was a working man. Now, he tells me he has a date. I fought off a fit of schoolgirl giggles and mommy tears. I managed to hold it together enough to ask what they had planned.

They’d decided to take a photo in the photo booth at the mall. I asked if they talked about doing anything else . . . nope. Just the photo booth. Such innocence is a welcome respite from the real world. He said goodnight like it was any other night and went off to bed, my tears fell and the giggles escaped before the door clicked shut.

Before the end of the week, after a couple of phone calls and a few well placed suggestions, a movie and a bite to eat was decided on. They would visit shops in the mall and talk. Saturday came too quickly for me. I hadn’t realized he was already dressed for his night out when he came to me, I told him to go get changed for his date. He didn’t quite understand the importance of slightly more polished attire. We settled on a pair of nice, muted black and gray cargo pants and a black tee with a dragon on it, his favorite. He combed his thick, long hair back into a ponytail and sprayed on his best smelling deodorant. I even got him to brush his teeth. He decided to forgo the shave; we’re still working on that one.

I imagine it may be hard for others to imagine the importance of these seemingly ordinary and perhaps even mundane moments, but to me they were anything but ordinary and far from mundane. There was a time I wondered if he would ever have a friend, and here he was readying for his first date.

The time to go was drawing closer with each beat of my heart. I saw the first glimpse of nerves showing in his eyes. He assured me he was fine. We arrived at the mall just as her mother was preparing the wheelchair he’d complimented his date on only a month before.

Her mother had the same look in her eyes I know I must have had in mine. I imagine she wondered if this day would come for her daughter just as I wondered if it would for my son. I was so lost in the moment I forgot her name as soon as she introduced herself. We talked for a time after they left us to ourselves and our emotions. It was a relief to see she felt as I did. She asked me about him, I asked her about her daughter. I felt comfort seeing the small tears forming at the corners of her eyes, I wasn’t alone.

I spent the next hours talking to my husband about how surreal the whole thing was. If I wasn’t saying, “I can’t believe he is on a date right now”, he was saying it. It consumed our thoughts and our conversation. We were already back at the mall when he called at nine o’clock. “The date is over.” he said. As we pulled up to he curbside, her mom was already helping her into the car; we listened as our son told us of their evening while she carefully placed the pieces of the chair into the trunk like she’s surely done a million times before. Somehow, I don’t think she usually did this with such a soft smile on her face.

He told us the movie was great, he said he had a hard time holding her hand like she wanted, not because of the chair though; he said it just doesn’t seem like a natural thing to do unless you are sitting down, maybe, he added. I heard her giggle from the car. He pulled out the new wallet he bought and proudly showed me each feature; the next thing from the bag was a cap gun and little plastic rounds. He’s been waiting for years to get one.

Lastly, he showed us the photo booth pictures. Four in all. He showed us which one she liked best even though her hair was back in a braid and she wasn’t happy with the way she looked. He said he thought she looked just fine though, another giggle floated from the open window of the car. I couldn’t help but imagine how he helped her from the chair to the booth and back. He said, “Well, goodnight.” and began walking from the car. I carefully suggested he say goodbye to his date before making his exit.

He went to the window, said goodnight and turned to go. Another giggle is all I heard after that. We said our goodbyes to her mother; I knew she was anxious to talk to her little girl about her first date. We walked slowly back to our own car. Further details were few, I took what I could get, once again fighting off tears and the urge to giggle just a little.

He said they’d had fun, he said they were quite opposite. He didn’t like the stores she wanted to visit and she didn’t like the ones he wanted to visit. He didn’t understand how she could ask him to leave a store he enjoyed and then ask him where he wanted to go next. He said he told her the night was about her and what she wanted, so he found himself in the most girly of shops.

He said they have plans for another date and they will share their dinner break at work on Monday. I don’t know if he understands the whole concept of dating. He has referred to her as his girlfriend since she first asked him to go out. I have fear for him and I have hope for him. Such hope. I don’t know what this milestone is like for other parents, I somehow think it carries different emotions for them. Of course, I’ve no way of knowing.

I found myself staring at him this morning. I couldn’t take my eyes off him. I saw my baby and I saw the man he has become. I think part of me wanted to feel a little sad, but I’m not sad. I feel something I haven’t yet found a name for. I am so proud of him. He was a gentleman, just as he has always been. He is a good man; he will always be a good man. I can see that so very clearly. His disabilities have become his abilities. They have helped form this perfection I see before me. I thank God for him. I can’t help but wish I could hold on to him forever, but now I think I’ll let go just a little . . .

When I pulled this from the shoebox tonight, it brought tears to my eyes. Seven years have passed since his first date, there has yet to be a second. They were the perfect couple to share this experience, the rest requires more than either of them were able to understand. My son still says he is unsure if he will ever understand women, I assured him he never would. She was demanding and required more social interaction than he was able to give. When he tried to explain this to her, she called him names and threatened to run him over with her wheelchair.

Regardless of how the story ended, this was a monumental milestone I will never forget.

Crystal R. Cook

Is it really the least restrictive environment? Special education vs Mainstream

Aug8

*The following is based on personal experience and observation both with my own children and those I have advocated for in the past. I realize there are indeed success stories involving a smooth and beneficial transition from a special education setting to a general education one. Unfortunately, there are many more examples of the system failing.

The methodology behind mainstreaming special needs students into the general education classroom is too often poorly thought out and implemented. It takes too broad of an approach to the special educational needs of many students, and in doing so, only serves to hinder, not help.

Special education was created for a reason. For a population of students with different needs than many of their peers, different abilities which sometimes require a separate and unique forum in which they can learn, an environment better suited to meet their needs. The school system has been caught up in a whirlwind of state standards and testing, coupled with the need to be politically correct, it spells disaster for many of our children.

Over the years I have seen many school districts systematically take away the services our children need and are entitled to. Parents have to fight and go through due process hearings and mediation to get their children the educational services they are by law entitled to receive. The need for socialization has replaced the need for academic achievement. There are many ways to find a social balance between the mainstream and special education programs.

The term least restrictive environment is thrown around quite liberally to loosely justify taking aspects of special education away. The least restrictive environment is supposed to be just that, an environment in which a students social, emotional and educational needs are met without depriving them or restricting them from growth and development at their own pace.

In reality, what many educators are deeming to be the least restrictive environment for a learning disabled or mentally challenged student is, in fact, often the most restrictive and detrimental environment they could be placed in. The very best general education teacher will not be able to meet the needs of a student or students who require a different approach, one they most likely haven’t received the training required to teach. This only leads to frustration for the teacher as well as her students.

Many classrooms themselves are simply too overwhelming for the special needs student. The room may be too colorful, too noisy or have too much movement. The fluorescent lighting itself can cause havoc for a student with sensory integration disorder. 1 in 68 children have been diagnosed with an autistic spectrum disorder. Just those few things I’ve mentioned can be too much for them to handle.

If a students learning challenges are mild enough to be placed in the general education setting and they are thriving, then they are in the right place. If they are not thriving however, if they are overwhelmed and cannot keep up, or they are ostracized because of their differences, then they should not be forced to endure it for the sake of satisfying those who have jumped up on a soapbox of denial. We cannot make them fit in or adjust. The misguided notion which says we are preparing them for the real world by trying to assimilate them into a society that may or may not accept them, only proves to make the transition even more difficult for them.

Many mainstreamed children with special needs leave school feeling ashamed of who they are, feeling they were not good enough. How is that going to help them in this real world everyone keeps talking about? More and more students with special needs are failing to reach graduation, they are held back or worse, many drop out of school entirely. They are not being given the opportunity to learn many of the things they could be, and should be learning in a proper educational setting.

I find it odd that gifted children are given their very own society. There are advanced placement classes specifically for those with academic prowess which surpasses their peers. Why are they there? Because they learn things differently than the other students. Because the regular education setting did not provide them with enough of what they needed to maintain and challenge them. Why do we justify the segregation of these children while forcing others to remain in settings not suited for what is best for them?

Special education should be special education, separate and different from the mainstream, but there should be a bridge for those who are able and ready to cross over it.

As a mother of four children with varying degrees of special needs I have been involved in this debate for years. Since my oldest was two and half years old to be precise. He is now nearing 25 years old. I was trapped on the special education roller coaster for many years, and I must say, I did not enjoy the ride.

I think it best if the last word comes from someone other than myself, I would like to share with you the opinion of a brilliant, young autistic boy . . .

“It is not easy to be placed in a classroom full of kids that are not nice to you, who are sometimes actually mean. They don’t do it when the teachers can see or hear them and for some reason they are believed when they deny the deed. It is not easy to learn from a teacher who does not know how I learn and does not have the time to learn how to teach me. It is not easy to be in a classroom that is filled with colors and movement and noise and bright lights and constant changes.

A classroom best suited for me and many other students is one that is calming. One that does not display too many decorations and the lights don’t hurt my eyes or my ears. The fluorescent lighting in most classrooms make sounds that not everyone can hear. I need a classroom that has stability and structure and I need a teacher that knows the unique way I learn and has the time and training to teach me. I need a teacher that will tell me if there is going to be a change like a substitute or if the furniture will be arranged differently. These things are more important than being put in a classroom that I shouldn’t be in because someone who does not know what it is like to live with these things says I should be.

I resent the idea that these experts are trying to integrate us in with normal kids. Neurotypical does not mean normal. There is no such thing as normal. I do not truly care about what an expert thinks is best for me, I care about what really is best for me and for others just like me. I was in a regular education class and it was like daily torture. Thankfully my mother saw very quickly that something needed to be changed and starting fighting for those changes. I was able to go to a school with teachers who knew how to teach me, that were trained in the different abilities of their students.

There is room for socialization outside of school if we want it. That is something experts do not seem to understand. We DON’T always want it. You look at us walking alone on the playground talking to ourselves or stimming, you see us eating alone at lunch and think that we must be sad and lonely. Don’t you see that it is a choice for many of us? The schools need to stop taking away the freedom of kids like me. I will graduate from high school this year and I plan on continuing to change the way the special education system is structured because it is flawed. Thank you for your time.”

Wilson Cook

My son was 17 years old when he wrote this. He was completely removed from mainstream education in the 9th grade, he attended a special needs charter school through graduation. I attribute much of the success we have had to those special education teachers who took the time to really help him. My son was non-verbal as a child. I was told he would never learn and now he is the one teaching the lessons.

Crystal R. Cook

The day he was diagnosed – Autism

Jun15

I sat for what seemed like hours staring at the small stack of papers the doctor had given me. My tears had already stained many of the pages. I stared at the word Autistic, it stood out among the rest. I ran my finger along the printed word. Autism, Sensory Integration Dysfunction . . . the tears rained down.

We’d waited so long for a diagnosis, so long for someone to listen and understand. The tears I shed were not in sadness or despair, I was happy, near euphoric quite honestly, I was excited about what this long-awaited diagnosis meant for my son.

He will be 26 this year, I knew the moment our eyes first met there was something special about him. I realize all mothers could make that claim, but somehow I knew something was different. As time passed, it became more and more apparent there was more to my feeling than just a feeling. He was not meeting the milestones he should have been meeting. He was so different from other babies his age.

Twenty-plus years ago the Autistic Spectrum didn’t seem to exist. The word Autism kept coming to me, but the doctors dismissed the notion. When he was two, he was enrolled in a special needs preschool through early intervention. He was diagnosed as learning disabled with Sensory Integration Dysfunction. Later they added Pervasive Developmental Disorder – Not Otherwise Specified. He began speech and occupational therapy and I saw change and growth, but there was still something there, right beneath the surface.

He began speaking shortly before he was five years old, before that it was mostly echolalia sprinkled with random words and phrases he was learning. When he began grade school his services stopped. They said he did not have a qualifying condition to merit the services such as continued speech and occupational therapy he so badly needed. PDD-NOS was not specific enough.

He was listed as learning disabled and placed in a mainstream classroom with modified work. I watched my son slip away and I began to fight. All the while, teaching him and working with him as I always had, but I fought the school, I fought the district and finally, in the fourth grade he was placed in a special education class and he began to learn.

It wasn’t enough though. They didn’t understand him. They forced him to make eye contact he was unable to make. They forced him to suffer through an ever-changing and unpredictable schedule and punished him when he would retreat into his own little world. I once again brought up Autism. He can talk they said, he doesn’t have Autism. He is smart they said, he can’t possibly be Autistic.

My younger son was having many of the same difficulties and was beginning speech therapy. The school psychologist suggested I had Munchausen’s by proxy and urged me to seek help. I was furious. I made an appointment with yet another doctor and within a week my prayers were answered. By God’s grace we walked into the office of a young doctor who had recently attended a seminar about Autism.

He knew there was a spectrum, he new about Aspergers, he knew how to diagnose my son and he knew what we needed. In my heart I knew he was autistic, now someone else finally understood. I broke down in his office. I tried to hold it back but the flood of emotions I’d so long waited to release could not be contained. I praised the Lord right there in that office and have been praising him in thanks every day since.

With this new and proper diagnosis my son was placed in the perfect classroom setting, he was given back the therapies he needed and deserved. He began to grow and learn once again. There would be more battles with the district through the years, but I was relentless in my quest to see he had everything he needed to thrive.

I eventually fought to remove the Aspergers diagnosis in favor of Autism, technically, he fit the diagnostic criteria regarding speech development for Autism, it proved to be a magical word and the educational and therapeutic doors which had remained closed until that point, suddenly opened.

He is a wise and wonderful young man, intelligent and witty. He most definitely walks to the beat of his own drummer and he is perfect, just as I always knew he was.

The day my son was diagnosed with autism was one of the happiest days of my life. Two of my four children have autistic spectrum disorders, I have been blessed beyond measure, it is an honor to be their mother . . .

Crystal R. Cook