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Topic : Asperger's Syndrome

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Created on : Sunday, September 17, 2006, 11:59:34 am
Author : DrPhilBoard1
If your child suffers from Asperger's syndrome, find support and share advice with other parents here.

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November 22, 2006, 8:28 am CST

some of it

I have Aspergers,and it does sound like some of the symptoms that I have.

 
November 25, 2006, 5:51 am CST

Asperger's Syndrome

I've been skimming through this morning and saw so many good thoughts. I am a teacher who works with students diagnosed with asperger's syndrome as well as those who have other needs. Someone mentioned OASIS - a very good source. Someone else mentioned TEACCH - another very good approach that works for some students. Some students have been very successful without special education support, and others have benefited from it. Many students diagnosed with asperger's syndrome are also talented & gifted. I've read some of your comments about students diagnosed with asperger's syndrome having other diagnoses (ADHD, OCD, etc), and I'm sure you know that sometimes the characteristics of various labels overlap. As someone mentioned earlier, the supports & skills available vary from state to state and from school to school. There's a lot of information and more is being learned each year. I've been doing research this fall because a grant has become available through one of our universities. I'm still reading and learning more, but I wondered if any of you have heard of the term "twice exceptional learners". P.S, How does a poster go about breaking posts into paragraphs? I thought I had done so, and when I checked the preview option, everything jumbles together.
 
December 27, 2006, 11:33 am CST

Thank You.

Quote From: jelleybean1972

I love your attitude on Asperger's!  I too am the mother of a child with Asperger's...Daniel is 8.  I think that learning what a childs specific abilities are (and how they vary from day to day, & under different circumstances) is the key to our kids' happiness and success. I want to make sure that Daniel is living up to his potential, but I am  careful not to push when it is obvious that he is just not capable of something (ex. declining a family function when I see his stress level is high and the added stimulus would put him over the edge). I try to give him the tools to react properly to social cues and situations.  It doesn't always work but I keep trying.  =) My son is the single most loving and dynamic person I have ever met and I want to celebrate that while teaching him how to function in this world (that is full of people that simply don't 'get him').  Our life is constant struggle to find the right combo of behavior modification (changes to suit his capabilities and my own- I AM a single mom, full time college student and working TOO! = ), medication (he's been on up to 4 different meds per day) and therapy (we see 3 different practitioners).  We are just doing the best we can and for the most part we are both happy.  I admire you (the gal with the 13 y.o.) and your family's acceptance of Asperger's......you obviously have filled your home with LOVE!  Have a happy day!
I was very happy to hear from you. It really makes me feel there are "really" other people out there that understand or know what it's like. Thank you, again. Love and prayers to you and yours.
 
January 9, 2007, 4:20 am CST

Mother of Severly Autistic Angel

 

I am the proud and grateful mother of an amazingly sweet little girl (Mary). I am here because I am more than willing to help anyone that needs help if they need it. I wish I could have had someone with my now "hard learned" knowledge back when we first started this journey. I am also here however because I'm so dismayed at times with my school district. My daughter is recieving okay services finally right now. But unlike what seems to be concensus of some of the other messages I have had to and continue to fight with our school district to get things done. I hate confrontation but, have learned to fight very well to advocate for my daughter. Fighting a school distict is exhausting.....totally exhausting! But, Mary is worth it all....every single word, emotion and tear!

 

Back about 8 years ago I remember thinking so selfishly "what did I do to deserve this?"  Why did I deserve to have a child that went from a happy and giggly sweet breastfed baby to a child who reacted as though my touch to her was now painful. To have to make sure I woke up before her or else find her and her room covered in her feces. To a child that just would rather sit in a corner and rock and stare at lights and become obsessed with books...any books...actually my nursing books. Repeatedly I just asked why. And then a freind finally one day dealing with me the frustration one day said to me how blessed Mary was that God chose me to be her mother and I immendiately with tears falling realized then and said....No I'm the one that's blessed that he chose me to me her mom. And things just clicked! I realized why I was here on this earth. I was and am here to love, teach and fight for this sweet little angel and others like her. And I do fight. I try to do it nicely but have also learned that it's not always possible to be "nice". I try very hard to pick and chose my battles both with Mary and her brothers but in particular with our school district. I am probably some days hated by our school district but I know too I am respected as an advocate for Mary. The biggest complement I've had was one day after an IEP meeting I overheard two educational personel talking about me and a meeting we had just had and one said "Wow she can really be a b****....and the other said yeah but if I had a disabled child she's who I'd want there to fight with me"!

 

Being Mary's mom and not being her advoate is just not possible. If anyone for a moment can just put yourself in Mary's life you could see the torture she and others like her must endure. Trapped in this body and life where you cannot tell your family or teachers your fears, wants, hopes, dreams, physical and emotional pains or that you love someone. Not understanding why the light hurts you or to see your mother cry because her touched caused you so much pain but would never want to her to be hurt due to your reaction. Maybe knowing your different and not being able to express your fears and worries for your future. Someone making fun of you and your not understanding why or worse your understanding why but not being able to tell your mommy and teacher and recieve a hug of caring.

 

 Fighting for her most days is easy but the days it becomes hard I just think of how hard "life" is for her and see her big smile through all she must overcome in front of me and even worse alone and suddenly it's all so easy and the will to stand up and fight comes back!

 

Mary is now doing fairly well but I've had to fight. She now is on a very structured schedule and ABA program at school. We now have per the district paying for it an ABA and Austism Certified Consultant working with Mary and our IEP team. And after fighting to get her in here she is now helping to help some of the other autistic children and staff have been trained by her now. Mary is once again doing PEC's and it's being done corretly by trained staff this time around so we're hoping it works this time. She has her own one on one aide throughout the day and recieved speech at school 5 days a week. And again this was all with fighting the district that  we finally have this. She comes up and hugs us spontanouesly and makes eye contact. She's even beginning to reach out to others and be a bit social. She is doing quite well but I am still fighting. I've recently had to make a Civil Rights Complaint against the district. I'm not sure if they'll do anything or not but at least I guess I'm trying. Our district is not allowing the "disabled" children equal oppurtunies regarding "electives". My "disabled" child was only offered Adaptive PE and a Life Skills class which is not even a choice but just mandatory for "the retarded" children in the disrtict as I quote one of the school counselor's. So needless to say maybe you can see what I mean with just this one example by having to fight!

 

Anyway, please let me know if I can be of help and if you think in turn you can help me!  Wishing all you parents out there with similar challenges and little angel's to care for all the best! Your in my prayers!

 

 

 

 
January 12, 2007, 10:21 pm CST

Thank You

Quote From: kelly715

To all those parents of children with autism, aspergers, andother PDDs,   

I believe that the world is truly blessed to have parents likeeach of you.  The amount of energy andstrength it takes to care for and fight for your children every day is astounding.  My personal experiences as a para for a childwith autism have brought me great joys over the past six years.  I was given this poem a few years ago; I hopeit brings inspiration to each of you.   

                                                    "Welcome to Holland"   

                                                   By Emile Perl Kingsley   


I am often asked to describe the experience ofraising a child with a disability to try to help people who have not sharedthat unique experience to understand it, to imagine how it would feel. It'slike this ...   


   

When you're going to have a baby, it's likeplanning a fabulous vacation trip to Italy. You can buy a bunch ofguidebooks and make your wonderful plans. The Colosseum the Michelangelo David,the gondolas in Venice.You may learn some handy phrases in Italian.  Its all very exciting.   


   

After months of eager anticipation, the day finallyarrives. You pack your bags and off you go. Several hours later, the planelands. The stewardess comes and says "Welcome to Holland.   

Holland?!?you say. What do you mean, Holland?I signed up for Italy!I'm supposed to be in Italy.All my life I've dreamed of going to Italy."   


   

But there's been a change in the flight plan.They've landed in Hollandand there you must stay. The important thing is they haven't taken you to ahorrible, disgusting, filthy place full of pestilence, famine and disease. It'sjust a different place.   


   

So you must go out and buy new guidebooks. And youmust learn a new language and you will meet a whole new group of people youwould never have met.   


   

It's just a different place. It's slower-paced thanItaly, less flashy than Italy. Butafter you've been there for a while and you catch your breath, you look around,and you begin to notice that Hollandhas windmills. Hollandhas tulips. Hollandeven has Rembrandts.   


   

But everyone you know is busy coming and going fromItalyand they're all bragging about what a wonderful time they had there. And therest of your life, you will say "Yes that's where I was  
supposed to go.That's what I planned".   


   

And the pain of that will never, ever, ever goaway, because the loss of that dream is a very significant loss.   


   

But if you spend your life mourning the fact thatyou didn't get to Italy, youmay never be free to enjoy the very special, the very lovely things about Holland.   

    

 
Thank you for that.  I know you posted quite awhile back, but I have just read it and it means so much. 
 
January 16, 2007, 9:21 am CST

Help From Other Aspie's

I post this message in hopes of receiving response from Asperger, Asperger/Gifted persons.  I am the mother of an (almost) 18 year old son who was very recently diagnosed as Asperger/Gifted.  Until this diagnosis, he had been treated for anxiety, social anxiety, depression, OCD.  Our first awareness of a problem was in elementary school, 4th grade.  Our son struggled with a variety of "symptoms" such as asthsma, eating disorder, rage, etc. and was treated with counseling and anti-depressants. 

 

When he entered 7th grade, together we made the decision to stop the meds.  He had a fantastic 7th-11th grade run.  He maintained his 99.999 GPA, took leads in the school plays, was active in clubs such as Art/Foreign Language, SADD, National Honor society, visited France for a month on an exchange program and attended Boy's State.  He did all of this and seemed so together, and so happy.  The only concern I had was that he was part of the group, but always independent.  Meaning, he didn't do anything socially with his peers apart from the school programs.  I feel it is important to include in this paragraph that our son has been so fortunate-his peers see him as a "very smart and super cool dude" and he has not been the brunt of teasing. 

 

Wow!  What is my problem??  Well, in 11th grade he was diagnosed with Popleteal Artery Entrapment and had to undergo bypass surgery on his lower legs.  This unfortunately, set him back in his running and also took away his chance of applying to Annapolis.  He was under sedation for 4+ hours with the surgery.  He came out of the recovery room a changed person.

 

All of the depression, anxiety, sour attitude returned from that moment.  It is with this return in symptoms that we started up the counseling and meds.  It was just before he started his senior year in HS that he was diagnosed as Aspergers/Gifted.

 

As life is now pushing him towards the next phase of life (college) he is now completely "shutting down" and withdrawing.  He will not/can not go to school and he will not/can not do ANYTHING that his psychologist and other doctors are telling him he needs to do to grow beyond.  He can be the next Bill Gates but right now he's failing every one of his core classes.  As his mother, I am so afraid that he is just giving up.  I am afraid that he will become "the guy who never left home" and at age 30 he will ask my why I let him fail. 

 

What is he feeling? How do I reach him?  What is it that I can do to best help him? I have tried everything.  On a typical morning, I will spend upwards of 2-1/2 hours trying to get him up and to school.  This is a futile waste of time 90% of the time because he ends up not going to school.   I have removed every excuse that he has expressed (when he will talk to me) but now I have become so frustrated and so exhausted.  I feel like I am herding gerbils. 

 

He is not withdrawn 100% of the time.  It is typically centered around getting him moving forward. When he chooses to actively participate in family life, he is himself: sweet, loving, funny and fully engaged. 

 
January 18, 2007, 6:51 am CST

Autism & Aspergers

I am a mother who has three daughter's. My middle child Courtney is 9 and was diagnosed with Aspergers roughly a year ago. My youngest Sierra is 5 and was diagnosed as severely Autistic when she was roughly a year old. Life has been very difficult and stressful from one day to the next dealing with my two daughter's who have such disabilities. As some of you have done, I too would sit and ask "why is this happening to me". I have come to realize though that things are not put in front of you if one was not able to handle the situations. I feel that everything happens for a reason even though we may not understand why right away. I love my daughter's with all of my heart and will always do everything in my power for them. They have given me strength that I need to keep moving forward for them. I am completely blessed to have the opportunity to be there mother and really would not change that for the world. I am there hope.

 

I will not fib and say that life is a piece of cake ... I would only be lieing to myself. Courtney lives with her father through out the week and I have her on the weekends. For the longest time her father did not want to believe that there was something wrong with his daughter and refused to have her tested to try and find answers to the problems that she was having. It was so frustrating for me to sit back and watch her struggle knowing that medically there was nothing that I could do since he was given all control of that. The only one that was truly suffering was Courtney. Her emotions run so high and lots of times she is withdrawn. All I could do is try to talk with her when she was with me ... though this tends to be a rough thing to do. She does not seem to like to talk about her feelings and let other know what bothers her. She does not really have any friends and is always trying to do crazy things to get others to like her. She wants so much to be like her older sister and live the life that she (Jasmin) has. Courtney is always crying a lot ... anything from losing at a game activity to having to change her cloths when she is wearing something unreasonable. She thinks that nobody loves her and had often wished that she would just die. Talk about heart breaking. To have to hear your child wish they were dead when they have there whole life ahead of them. She is doing better in school finally, but struggles with her Dads expectations that she must have A's or B's. Getting a C is not acceptable to him and Courtney has been getting a couple of those. From what I am told, her Dad and his girlfriend are very hard on her with lots of yelling and punishments for nearly every little thing. They do not seem to understand that Courtney is special and the way you treat her nor approach her should not be the same as the other children. I feel that they are just pushing her over the edge and a lot of it is out of my hands. They still have yet to get her any kind of assistance to help her try to deal with what she is going through. I just don't know what to do where she is concerned.

 

Sierra is with me full time. She like I said is physically 5, however since her recent testings she has come to be roughly the age of 2 years old. Wow ... she seemed to be doing better and then the reality that she is actually that far behind hits again. I look at her and my heart just breaks. To have to watch her every day struggle and possibly for the rest of her life. I realized when she was about six months old that she was different. I did a lot of research on line to try and figure out what the problem might have been when I came across Autism. I had her tested and she was diagnosed at about a year old. She has been receiving services since that time. It started with home programs that included several therapists and teachers coming to my home to work with her since she was to young to attend an actual school program. She was involved with that for long while, but yet she was not responding very well to it. When she was old enough, she started attending UCP (United Cerebral Palsy) where they specialized in children with Autism as well as other child disabilities. She has come a long way since being involved with UCP, but she still has a long way to go. We are in a situation with her now that she is about to graduate from the program that she is now in and will be turned over to our school district. I am frustrated with the fact that she will no longer be able to attend more programs with UCP and now we have no idea where she is going to be able to go. One thing is for sure and that is that she can not attend a public school. Our school system in our town is so small and they by far do not have the means to handle Sierra. It seems once again that everything is up in the air where she is concerned. UCP informed me that there should be a meeting coming up with the school district by the end of this month (January). I called the school and still no meeting has been set to discuss possible new placements for her. They tell me that they will let me know when they hear something of a meeting to happen. What is that. I do not think that they understand at all how important being on top of things for Sierras sake are. Then again, why do they worry as none of them have a child like Sierra. If only they could put themselves in our shoes for a day and then possibly they would be able to comprehend. Where do I go from here to help my daughters.

 
January 20, 2007, 7:49 pm CST

Get Ready to Fight!

Quote From: sugarenspice26

I am a mother who has three daughter's. My middle child Courtney is 9 and was diagnosed with Aspergers roughly a year ago. My youngest Sierra is 5 and was diagnosed as severely Autistic when she was roughly a year old. Life has been very difficult and stressful from one day to the next dealing with my two daughter's who have such disabilities. As some of you have done, I too would sit and ask "why is this happening to me". I have come to realize though that things are not put in front of you if one was not able to handle the situations. I feel that everything happens for a reason even though we may not understand why right away. I love my daughter's with all of my heart and will always do everything in my power for them. They have given me strength that I need to keep moving forward for them. I am completely blessed to have the opportunity to be there mother and really would not change that for the world. I am there hope.

 

I will not fib and say that life is a piece of cake ... I would only be lieing to myself. Courtney lives with her father through out the week and I have her on the weekends. For the longest time her father did not want to believe that there was something wrong with his daughter and refused to have her tested to try and find answers to the problems that she was having. It was so frustrating for me to sit back and watch her struggle knowing that medically there was nothing that I could do since he was given all control of that. The only one that was truly suffering was Courtney. Her emotions run so high and lots of times she is withdrawn. All I could do is try to talk with her when she was with me ... though this tends to be a rough thing to do. She does not seem to like to talk about her feelings and let other know what bothers her. She does not really have any friends and is always trying to do crazy things to get others to like her. She wants so much to be like her older sister and live the life that she (Jasmin) has. Courtney is always crying a lot ... anything from losing at a game activity to having to change her cloths when she is wearing something unreasonable. She thinks that nobody loves her and had often wished that she would just die. Talk about heart breaking. To have to hear your child wish they were dead when they have there whole life ahead of them. She is doing better in school finally, but struggles with her Dads expectations that she must have A's or B's. Getting a C is not acceptable to him and Courtney has been getting a couple of those. From what I am told, her Dad and his girlfriend are very hard on her with lots of yelling and punishments for nearly every little thing. They do not seem to understand that Courtney is special and the way you treat her nor approach her should not be the same as the other children. I feel that they are just pushing her over the edge and a lot of it is out of my hands. They still have yet to get her any kind of assistance to help her try to deal with what she is going through. I just don't know what to do where she is concerned.

 

Sierra is with me full time. She like I said is physically 5, however since her recent testings she has come to be roughly the age of 2 years old. Wow ... she seemed to be doing better and then the reality that she is actually that far behind hits again. I look at her and my heart just breaks. To have to watch her every day struggle and possibly for the rest of her life. I realized when she was about six months old that she was different. I did a lot of research on line to try and figure out what the problem might have been when I came across Autism. I had her tested and she was diagnosed at about a year old. She has been receiving services since that time. It started with home programs that included several therapists and teachers coming to my home to work with her since she was to young to attend an actual school program. She was involved with that for long while, but yet she was not responding very well to it. When she was old enough, she started attending UCP (United Cerebral Palsy) where they specialized in children with Autism as well as other child disabilities. She has come a long way since being involved with UCP, but she still has a long way to go. We are in a situation with her now that she is about to graduate from the program that she is now in and will be turned over to our school district. I am frustrated with the fact that she will no longer be able to attend more programs with UCP and now we have no idea where she is going to be able to go. One thing is for sure and that is that she can not attend a public school. Our school system in our town is so small and they by far do not have the means to handle Sierra. It seems once again that everything is up in the air where she is concerned. UCP informed me that there should be a meeting coming up with the school district by the end of this month (January). I called the school and still no meeting has been set to discuss possible new placements for her. They tell me that they will let me know when they hear something of a meeting to happen. What is that. I do not think that they understand at all how important being on top of things for Sierras sake are. Then again, why do they worry as none of them have a child like Sierra. If only they could put themselves in our shoes for a day and then possibly they would be able to comprehend. Where do I go from here to help my daughters.

Hello there! First let me say to hang in there and know your not alone and I won't let you feel that way if I can help it!

 

It worries me a litle that from what you just said about how the "school district" is acting so laid back about this issue is that either one of two things are happening. One that they are thinking they are not going to have to provide services or two that they really have no clue. First thing you need to do is to write a letter to your school district superintendent and specifically request a meeting to facilitate a meeting to get "transition" services outlined for your daughter. In your letter you need to seem kinda "uneducated" and just ask if it's them that you need to contact or your "State Board of Education"?  Trust me if you write this you will get a prompt response from your district and will have a meeting date. Hopefully the place that has been providing your daughter services can help you transition your daughter as well. The teachers and therapists working with your daughter should definately be there with you for you first meeting. I would even talk with them ahead of time. This would be my list of requests to help ease this transition for your daughter. 

 

1.) Staff from the school your daughter attends now go to elementary school she will be attending and observe with you. So they can see what's in place and/or what needs to be in place to help assist her.

 

2.) The special ed teacher, speech and occupational therapist along with administration go observe with or even without you your daughter at the present school she attends. I only say "without you" because when it comes to my daughter Mary if I show up in her class she wants to go home and of course any "observation" is not even going to happen. I hate it but it also to me is a compliment from her because she loves me enough that being with me is something she wants when she sees me. So anyway just don't be disappointed if you cannot observe with them. The main point is to just get them in there to observe her and what this place is doing for her so that they get an idea.

 

3.) Make lists of what she needs now and what seems to be working.

 

4.) Ask for a ABLL's assessment. With your daughter's functional level this asessment could really be of great assistance to your daughter's learning and to the staff and yourself as to tracking her progress. It is a MUST!

 

Please feel free to e-mail me at Angela535@cox.net

 

I will even send you a copy of my child's current IEP so you can see what one looks like. My daughter's is about 20 pages long.

 

Please know I don't  "know it all" but I am more than willing to help you with whatever I can. I wish I could have had someone like myself way back then. Know also that I am only giving you advice and it's totally up to you wether to utilize it or not. And you will not hurt my feeling either way. You have to do what's best for you and your daughter.  I am only here to give you support. Needless to say just hang in there!

 

Sincerely,

 

Mary's Mommy

 

Angela

 

 

 
February 4, 2007, 7:11 am CST

Asperger's Syndrome

Quote From: mena1969

HI I AM NEW TO THIS ARCHIVE I NEED SOME ADVICE ON HOW TO HANDLE MY 13 YEAR OLD BOY, HE NEVER WANTS TO DO WHAT HE IS TOLD AND ALWAYS ARGUES AND DOSEN'T LISTEN TO ANYTHING ME OR MY FIANCE TELL HIM.  MAYBE SOMEONE OUT THERE COULD GIVE ME SOME ADVICE AND HELP ME.  I TRY TO COMPROMISE WITH HIM BUT HE STILL DOESN'T WANT TO DO AS HE'S TOLD.  WHEN HE SEES HE'S GETTING ME FRUSTRATED AND ANGRY THAT IS WHEN HE WANTS TO DO WHAT I TOLD HIM.  BUT BY THEN IT'S TO LATE. 

 

SOMEONE PLEASE HELP I FEEL FRUSTRATED, ANGRY, CONFUSED.  ANYONE WITH ADVICE PLEASE LET ME KNOW

 

THANK YOU

Hi Mena..I'm Glennis and the mother of a 20 yr old daughter with Aspergers.  I think the advise given on the previous reply to your message is very very good..and true.  From a practical standpoint, it addresses some of his needs for stucture and guidance (taking the confusion of some decision-making off of his shoulders, therefore greatlyyyyy reducing his anxiety).  Whatever your son's issues are, we all function at a higher level with calm around us.

 

That's really what tugged at my heart for you when I read your post..your OWN anxiety.  It seemed to jump out and scream for help.  It's an awful feeling to feel helpless and INeffective while you're trying to help your child.  Try if you can to find ways to reduce your own stress; it's catchy!  One way is simply accepting him as he is, then learning real ways to help him and yourself.  If someone in authority insisted you climb the Empire State Building ..and do it now!!...or some other 'task' completely beyond your ability to comprehend, you'd say 'NO WAY!!!'..and as that 'command' was repeated over and over, you'd get frustrated and angry because absolutely NO ONE seemed to understand.  Maybe that's your son; and maybe it's all of us parents to some degree trying to do the best we can.   Just grant your son the same rights to his frustrations that you, yourself, feel, and maybe that tiny seed will blossom into a greater understanding of his needs and yours so that you can SEE the light that IS at the end of the tunnel. 

 

I sure don't intend to be 'preachy', but sometimes that first step is as simple as acceptance.  We all want to be accepted for who we are; and with that, feel that we are precious to those around us.  Aspergers has NO EXCLUSIVE CLAIM on that desire..

 

So take a deep breath..find the commonalities with your son..hug the dickens out of him...and tool yourself up with as much knowledge of his individual needs as possible.  

 

The very best of luck to you Mena..

 
February 4, 2007, 12:46 pm CST

The Special Needs DESERVE a special future!

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????????????

 
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