Hi everyone; My name is Glennis and many online call me Cg (short for Cowgirl). You'll probably also see some posts around by my 20 yr old daughter, Courtney, aka Court, aka Lil' Cg lol. That's her in the picture as a senior in high school, almost 2 yrs ago now.
At the age of fourteen, Court and I were the proud recipients of the only diagnosis that seemed to fit her closely enough to accept, Aspergers. It was a day of celebration for us! Finally, something came close to explaining her symptoms; and more importantly, along with the diagnosis, came tangible help that could NOT be dismissed by the 'powers that be'...the school and the school district. There's a lifetime of stories about Court, but this one was so important to her success, I thought it worth mentioning first.
I had had it 'up to here' with the rubber-stamped IEP's that set down 'rubber-stamped' goals. I was terrified at the thought of her entering a large high school campus and fending for herself. It was at that point that I SIMPLY refused to sign the 'exiting' IEP from her middle school, UNTIL such time as they could provide me with a satisfactory plan for her safety, her education, her socialization, her success! It took over a year and a half to accomplish that. The IEP began near the beginning of her 8th grade year, and concluded half a semester into 9th grade. The 'powers that be' were growing anxious when the IEP was still not signed by the end of summer and the beginning of her freshman year. They 'appeared' to have nothing to offer her, but definitely wanted her moved on. I kept her home from beginning 9th grade, and it was finally at that point that 'they' got busy with options to suit her REAL needs. The reason they 'got busy' was because they were MANDATED, by law, to meet her needs! Since she wasn't attending school, therefore, they were MANDATED to provide a private teacher AT OUR HOME, until such time as a plan, IEP, was accepted. PULEEEEEEEEEEEEEEEEEEEEEZ KNOW YOUR RIGHTS!!! We were very fortunate in the teacher they provided. She had an autistic child! Her skills in working with Court were fantastic and productive. This home-schooling went on for six weeks until a GOOD IEP was finally presented. Court entered 9th grade, six weeks into the semester, with her own aid to help her learn, focus, transition, and move around campus safely. The aid sometimes walked WITH her, sometimes yards behind if she had a friend with her, whatever felt right at the time, but Court DID feel safe. Just as importantly, she felt she mattered! The single most dramatic example I can give is this...Court left middle school with all F's; she received straight A's her first semester in high school. I no longer had to explain that I 'knew' my child's needs.
By the way, aside from knowing your rights, and aside from knowing your child's needs, please also know that the decisions that affect your child's future insofar as 'rubber-stamping' and 'least help' are guided by a thing called BUDGETARY CONSIDERATIONS. School districts are not gauged by the success statistics of their special students. They are accountable for the budget, simple as that. It was an excellent neuropsychologist who provided us with the diagnosis of Aspergers and the IEP support to meet Court's needs, rather than those of the school district.
She finally entered 9th grade and a big high school campus in a small town in California when we moved to Texas in January, mid-semester, of her 9th grade year. Oh no! I'd have to start all over again? NOPE!! That IEP went right along with her. I called her soon-to-be school in Texas way ahead of time, sent them her IEP, TOLD them about her and her needs. This Texas town was even smaller than the one we were leaving, BUT, they were just as clearly mandated to meet her needs, and arming myself with that information was a relief. Then a funny thing happend. Every time I was ready to 'fight bear', they said, why sure! They provided an aid who even 'pal'd around' with her at the local Dairy Queen after school. Even beyond that, this small, small town high school wrapped her in their arms and from day one, it was love. Every teacher and person in authority KNEW her and talked to her and walked along with her here and there AND let it be known that 'nobody messes with Court'. No one did. The other students talked to her, ate with her, called her, included her. Are you drooling yet? Have you ever ever heard of such a 'fantasy' support team for your child? I hadn't. Wellllllll, this move was an 'intermediate' move for just one quarter, until we moved to our final destination a few miles away..and a new school..and a new school district. I just KNEW, as surely as I knew my own name, that we COULD NOT ever find such support again. I was wrong. What in the world was in the drinking water here in Texas that was so diametrically opposed to those attitudes we'd left behind in California? Instead of hearing what they COULDN'T do, I'd hear, "What CAN we do?" We just happened upon good and caring people who 'circled the wagons' around her and saw her as an individual. When we moved to our FINAL destination, one more thing happened. The administrator of special education called me and said she had an idea. There was this girl named Rachael. Rachael was blind and a very sweet girl, and she could use a friend. So before her very first day in this new high school, Court had a 'pending' new best friend. They met on the bus the very first day, and the rest is history. They're still best friends. They had a common need of HAVING a best friend, and it just blossomed. Rachael's mom and I are both single moms and quickly became friends too. It was easy, knowing we each had 'special' daughters who were good for the other one.
I've read so much here about other parents of children with Aspergers and so very much sounds so very familiar. I've read the posts by Muffy and Camilla who have Aspergers, and its so very much like hearing my own daughter speak. I wanted to jump through this screen and holler..GROUP HUG!!!!!...
There's another thing I've wanted to do for soooooo long since Court left high school; that is, to see more and various and tangible and positive opportunities for her. We were specially blessed thoughout her high school years; and I still remember and still FEEL the constant worry over her future, and over losing our 'safety net'. Our comfort zone didn't follow us. How can I ensure she learn the necessary steps toward a full and fulfilled, independent life? I've always felt she had the capability! How can I ensure that she learn the necessary steps toward a full and fulfilled, independent life? What if something happens to ME? Who will care about Court's future, about showing her 'possibilities'? My single biggest fear is that the answer to that questions is, THE SYSTEM.
After graduation, that was all we basically had to turn to, and it's not enough by a long, long shot. In order to give her SOME services though, we entered 'the system'. For her and so many special needs young adults, that is the only alternative. You're assigned a caseworker who advocates for her needs. In our case, we ARE lucky she's a wonderful gal, and strong advocate. It ISN'T, however, in her power to offer more than 'the system' HAS to offer, which is basically, dayhab, and menial job training. My feelings on the job-training are that I don't care if Court scrubs floors if that's what she wants to do, BUT I DO care that she isn't LIMITED to only scrubbing floors, if she DOESN'T choose that. As it turned out, her job-training was cleaning offices and she loved it. She may not clean her room, but boy oh boy, she cleaned those offices...for a paycheck lol...I think, mostly though, she loved it because it was hers, and an outside involvement, socialization, and if she got a raise, she earned it..and did. She started out two nights a week, then three..and headed to five when a serious health problem cropped up. We actually LEARNED of the health problem DUE to her job and its exertion. Court will be going through heart surgery very soon to repair a coarctation of the aorta..a 50% kink in her case.
We learned of this last August, and she's been pretty much housebound since then. Finally, surgery is on the near horizon; and with many prayers and blessings, she's going to be just fine. We're still left with that 'future stuff'..her life.
When she left high school and while we were waiting to see just WHAT 'the system' had to offer, I didn't want to see her become idle and have nothing to do, no direction. Court's done beadwork since she was 12. I was hammering my brain to provide SOMETHING positive for her to do 'in the meantime'. An online friend had opened a 'free' website, a blog really, but it showed me that we didn't have to be RICH to have an online site of our own. The idea grew and we tossed it around and decided to just go for it. She now sells beaded jewelry online and our 'shop' opened the first of October after her graduation. She had some local success selling beaded eyeglass holders and even bookmarks to local optometrists! Talk about validation!! lol..It was really neat to see. Still, a business is a business, and it takes a great deal of work and we DO struggle with that WORD lol..BUT, it's been a blessing for us. We make very little money from it, but a great deal of pleasure. We've turned our living room into a 'manufacturing' facility lol..and our dining room into a shipping dock. We have a longgggg table set up in our living room, and she sits on one side with HER creativity, and I sit right across from her, with mine. Who knew??!! Court was born when I was 37 yrs old, she's 20. Do the math lol..Who'd have thought that I'd have so much fun playing with beads at MY age!! We both do! We will sometimes 'hide' our creation from each other with a 'wall of supplies', and just enjoy the spirit of the whole thing, let alone the creativity! I wanted to share this part, especially because of an idea we've had for a long time now. After reading so many posts, including Muffy and Camilla, we just HAD to offer up an idea. Our business is called Creative Gifted Enterprises and its site online is that name with a .com at the end, creativegiftedenterprises.com. (CG Enterprises for short for 'Court and Glennis') Please DO NOT click over there and buy a single thing!! That's just not important. I very much hesitated even mentioning the site for that reason. We WOULD, however, love you to see it, and for a reason.
We would like to build it into much more than 'just another' online store. It's a heart thing with us. We have the site, and with it we have more space than we need. Muffy and Camilla, it would be so exciting for you and Court to be able to meet and just talk. You can do that here too! The thing that has us so excited is we'd like to offer any special needs parent or child or adult, the opportunity to show off your OWN stuff. Just show, or show to SELL, but have a place to do it with others who have so much in common with yourself. We have approximately 50 'online' pages available to 'play with'. They're already paid for, and we'd dearly love to see your talent, whether it's writing or photography or crafts or just 'talk'.
I don't know if it'll work! It's only an idea! I'd dearly love to hear what anyone thinks about this. Court and I are simple people with a simple wish to go forward and have some fun along the way, and to grow and create some of our OWN possbilities for her future. This seems like such a small idea in the overall concept of her future; but it's tangible and it's a start..and a try. She still has so many hills to climb and goals to set and aim for. Sometimes, after I've found that there ARE people just like us out there who've gone throught the same or similar, I have this need to just go forward, do something...instead of just hoping for the best for her.
It can't be the only thing though. I came to Dr. Phil's site in the first place to write him a letter. I'm just glad I read all these heartfelt posts first. I'm more inspired than ever to write that letter and nag and nag and holler and jump up and down and get his attention to help our special kids. I'm a single mom, and always have been. My time and resources are limited like most are. It's just that Court deserves so much more in the way of life choices than dayhab and menial job-training. ALL OF OUR KIDS DO!!! This has been in my thoughts for sooooo long. It crystalized, however, last weekend, when I had my OWN set of chest pains. After spending most of the weekend in pain and trying to set up emergency and/OR longterm possibilities for her, I went to the ER Monday morning and it WASN'T my heart. What a weekend! A reprieve. It was a blessing really. She now knows her probable options. She now knows that her future also rests in her hands, not just mom's. She knows her primary options, should something happen to me, ARE...dependence upon the 'system'..probably a group home..and dayhab..and office cleaning or something similar..OR..Independance and a lifetime of making her own choices. She opted for making her own choices, and learning how to do just that.
I haven't told you much about Court, being so consumed with the 'wrangling for help', but she's a pip! She's a joyful young woman who sees the best in people. She's 'blind' to disabilities of others. She IS subject to depression lately because of her life being put on hold until surgery, but she's a tough little cookie and is always willing to be 'prodded' out of her depression. She's her own little wonder. 4ft, 11-3/4" of some surprising 'pockets of wisdom', and always been that way. She writes voraciously. She rides horses, when she can. She reads, loves taking pictures, and has recently moved on to making movies with some program she found in our computer. I'll try to get those up on our site, too, because Mom was impressed! She continues to work on her own spelling and math, with NO input from me, just because it matters to her. Court has a speech delay. Her language skills are pretty strong, considering that delay. She's done that because she wanted to. She developed a 'speech dysfluency' in 3rd grade..aka stutter. I have no doubt it came along at that time, because that's about the time that school became more 'stressful'..more was required of her..and less known OF her..She started at the age of 3 with a diagnosis of CH, communication handicapped. That held until middle school, when they added more 'alphabet soup' and called her ADD, and LD, and ED, and PDD...Middle school had no 'ch' class you see, so they HAD to call her SOMETHING. Her middle school years were the single most horrific time in her/our life. It would take too long to go into now, but she was treated terribly BY people TRAINED in special education, her 7th and 8th grade teacher more so than anyone. Mom's 'revenge' was little solace, but it was some. I was able to show that heartless woman her straight A's, the first semester upon leaving her 'torture chamber' where she received straight F's. The FACT that there are incredibly wonderful teachers and professionals out there ISNT THE POINT. The fact that THIS ONE could so damage my daughter, IS. Yes, I was there fighting her for two years. Court didn't complain. She just became so so sad and it was difficult to 'pull' the reasons from her, but eventually I could. Her communications skills weren't up to the job, but her spelling tests were. Let me explain. Court would never ever say a bad or disrespectful word about anyone, much less an adult. One day she came home with her spelling test paper. On it were 20 sentences, using each spelling word in a sentence. Every single sentence contained the word 'Missy'! That's odd! I read each sentence and wondered why she chose to do that, so I asked her. It didn't take long this time to find out the 'why'. That's what her teacher called her! ie... "Well, Missy, just what do you think you're doing?"..."Missy, that's just taking TOO long to finish."..."Come here, Missy!"...Court told me she hated that!!!...I told Court she'd never be called that again. The principal agreed the next morning. I cried so much over that. What an ELOQUENT way for a vulnerable, speech-delayed, tortured child to say, "Mom, someone's hurting me and please make it stop."
Not a life for a lightweight is it? Just imagine how strong our children MUST BE, just to cope with the rest of the world. Court's really my hero, and not for just this part of her story. She's shown such bravery at terrifying times...more than I can go into here, but her courage IS a fact. She knows she always has my love and support and validation. She knows I love her more than anyone in the world. She knows I will always tell her the truth, no matter what. It was a promise to her as a toddler, and she knows I've kept it. I may have 'molded' the truth to fit her age, but always, always the truth. She can deal with it!
It's funny how this has come full circle as to the reason I felt so compelled to post after reading all the others. IF our children are strong enough to endure their daily lives WITH the various issues facing them, impeding them, then wouldn't it follow that they're strong enough to endure steps necessary, IF GIVEN A CHANCE, for greater and lifelong and substantive opportunities?
Thanks so much for listening. It's not only been cathartic, it's TIME. Time to network, gather voices and strength to do the best as parents, or persons WITH Aspergers and other special needs to make life as grand as it should be.
Dr. Phil????????????