Someone tell me what I should be doing!

[Rachel's Cavy Cove]

Hey guys,

I need your to help me. I am at my breaking point this evening.

I have an 8 year old boy who, since junior kindergarten has had issues in school, at church etc. When he was is grade 1 he was diagnosed with ADD. He is on Concerta which is a once a day treatment and when the dosage is right things go better but not perfect.

There has always been other odd things about my son but I never thought they were connected or anything in particular. My son was just "excentric". The more I puzzledo ver it and saw just how different he was from other kids the more I knew he needed to be seen.

I finally got referred to a paediatrician who suggested my son appears (to him) to have Aspergers. Far from an offical diagnosis mind you. In the meantime he wants him to have psychometric testing. To do that privately (even in Canada where we are) it still costs a considerable amount of money (at least $1500). My other option is to go through the school board which means waiting lists.

In the meantime my son is suffering severly. He cannot function at school at all. I do believe his meds need to be readjusted but the fact that everyone and everything is stuck in limbo while we wait for one test is driving me insane! There has to be more that can be done in the meantime. My problem is that I have no idea what to do. I don't know what to ask (or demand)! All I know is my son needs help and I feel like I am failing him becaues I can't get a diagnosis. I am certain after doing a ton of reading that he indeed has aspergers syndrome, in which case i also worry about his future. How will he be in highschool, will he get picked on, will be succesful in his chosen career, will he get married? All these things seem to be harder for people with AS.

Tonight I am just at my wits end. I have been crying for hours. I don't know how to help my son. He is struggling so much and all I can do is sit on my hands and wait.

I don't know if any of you have been through this but to know I am not alone would help. If anyone has any pearls of wisdom, things I should be asking for etc that would be invaluable to me.

Thanks for reading guys!

[fourbwabbys]

I know this is a hard time, we'll help you get through it! I suggest talking to the school, telling them that you are in the process of getting him tested and that an aid will be beneficial. I know some schools can be tough in topics like this, but really push it. Having an aid around will help him stay focused and out of trouble when the teacher can't keep an eye on him. Have you looked in pediatric studies on this topic? Some pediatritions will host a study on kids that have a certain ailment and will provide the evaluation and medication for free since you participated in the study. I see them all the time for ADD and ADHD, search around for anyone nearby that does it with aspergers. Good luck girl. We're all here for ya.

[TwoPiggieMama]

I don't have any personal experience, but I work with a lady with a 10 year old son who has similar problems. He's ADHD, Bipolar, and probably a few other things too. He's on tons of medications, and they always have to change them around, but when they fix one thing, something else acts up. He has severe behavioral problems, school problems, social problems - you name it, this poor kid has it. He's been kicked out of the YMCA summer program several times, once for trying to drown a girl on an outing, another for biting a councelor and drawing blood. He's left a note on his mother's bedroom wall saying he wants to kill her. Aside from his problems, he can be one of the sweetest kids you've ever met.

Anyway, this lady I work with put her son into a week long, intensive inpatient program in Delaware, where they monitored him 24 hours, tweaked with his meds a bit, and started him in therapy. She said he's doing MUCH better now. Maybe you should think about shelling out the extra money to put him in short-term intensive treatment where several doctors can monitor him. Its hard to pinpoint exactly where his problems are when they aren't watching him 24 hours a day, and sometimes descriptions of his behavior from you (and him) don't show the whole picture.

I wish I could tell you more, but like I said, I don't have personal experience in these things. And I'm not sure what Asperger's Syndrome is, so I can't really help much with that.

[Susan9608]

Try not to despair - a diagnosis of Asperger's syndrome will certainly mean that your son will have additional challenges in life, but he will be functional. He will be able to live, have a future, and be happy. I have seen a great many children in my hospital who have Asperger's syndrome, and most of them are doing quite well. There is hope - don't forget that.

I wish I knew what to tell you in regards to getting all the necessary testing, but I know nothing about how health care works in Canada. All I can do is wish you the best of luck. Please keep us updated and let me know if there's anything I can do to help you.

[piggly wiggly]

My son has a severe learning disability and still cannot read at 8 years old. The school kept taking forever with his testing, finnaly I started asking them every week when will it be done. After me pesstering them, his test was done at the end of last year. My suggestion is keep on them, our school boards are useless here. I too found private testing rediculous in the cost. Also ask your doctor about programs for him to join. My doctor told me of some places for children with learning disabilities for my son to go to.
They can see they are not the only ones with this problem, and they can learn and play and act out how they feel being "different". It is a great help and I am sure there are programs for your son, and they are publicly funded, well most of them. You are not alone in this being left in limbo by our nasty school system. Be persistent and firm. Good Luck

[Rachel's Cavy Cove]

Thanks for everything guys. Your support means so much.

I have to say his teacher and principal have been wonderful but until the board can get him tested their hands are tied. He can't get an EA or "aid" until he has been "identified". That being said they have managed to fanagle some time where an EA can come into the classroom but they aren't officially assigned to my son. Right now I am working on having the paediatrician write a letter to the board insisting that this test is essential for his diagnosis. I hope it bears some weight. The thing then is though he will be passed onto a developmental paediatrician. I feel like all he does is get passed around. Instead of going from a to b to c, can't we skip b and go straight to c. The program and study ideas were great and I will definately look into those.


I know that putting a label on my son won't change who he is. I love him no matter what; and I actually love a lot of his excentricities. I just need him to get labelled so he can get the help he needs before he falls too far behind.

Thanks again for everything. It means a lot knowing I have you guys to turn to and that someone out there is rooting for my baby boy.

[kathrynj]

Is there an autism association or something equivalent near you? I have a freind with two aspergers boys, one is my godson actually, so I know a bit about it, and the greif you must feel now.

My freind is very involved in the association now, they offer support, conferences etc, which has been absolutely invaluable, some people have put together a support group, and she has met many other parents via this.

It is really worth finding something like this, I hope there is something in your area?

[piggly wiggly]

I am with you 100%, my son kept getting put to the next grade without help. If he can't do the work in grade one, he won't be able to doit in grade two. But he went on and on he is now in grade three. I am glad you have you principals support, mine was the one putting it off until I got pushy. It is tough but it will work out, hang in there. We are rooting for you!

[VoodooJoint]

One of my best friends has 2 autistic sons. One has Aspergers. She has researched many drugs, has a great doctor and belongs to a few online Autism boards. She also homeschools her boys so knows loads about how they learn and what works best. If anyone can help you I think my friend can. Would you mind if I gave her your email to contact you with more info?

[Rachel's Cavy Cove]

Right now I am looking for anyone who can help me. I don't know what to ask for for what to do to get him this diagnosis. I don't really know anyone in this situation to go to for advice. So if she wants to contact me I would gladly accept any info she has to offer. Thanks so much voodoo. You're awesome!

As for an aspegers society there is one, the website offers little info but I wasn't sure that I could call them unless my son has had an "official" diagnosis. As sure as I am that this is it I am no Dr.! I mean when people who barely know you ask over and over again "does your son have aspergers syndrome?" too, it only adds weight. There is one mom at the school whos son is a high functioning autistic so I have talked to her a bit. She had Ethan pegged day one.

The school board came to talk about Ethan yesterday. I hope this means we are getting somewhere. The higher up on the list we can get for this psychometric testing the sooner we can move onto getting him the help that he so obviously needs.

Your support means so much. Thanks for everything. I really mean it.

[piggly wiggly]

That is a good sign that things are moving in the right direction. I think you should call the group, they would probably be more than willing to help, and might be good to have on your side when it comes to the school board. The group would know right away if your son has it and help you in the right direction.

[Rachel's Cavy Cove]

I spoke witha wonderful lady at Autism Ontario today and she said I am doing everything I can. She told me that there is a child development center just a couple of blocks from my house. (I am rather new to this area of town) She said I have every right as a parent to ask to be referred to it. She said though, until I have a diagnosis not much can be done for me because most centers won't allow someone in without one. So it's a matter of playing the waiting game. I just happen to be the most impatient person I know.

I am so glad I was able to move up his appointment though. He wasn't supposed to see the paediatrician again until December. I got him in for next week.

I suppose right now I am doing all I can, I just feel helpless that's all. Everyone tells me I am doing the right thing and to be patient. I can't stand seeing my son come home every single day having had a terrible day in school.

I don't want this scarring him. I really think with the proper diagnosis and help he can be quite capable of living a near normal life. I just don't want his self confidence to suffer at the expense of all this waiting. I want him to believe he can do anything and be anything. I want him to know he can get married and go to university and be successful and right now I am afraid that he will start to believe that he is no good because he can't even manage grade 3.

So back to the waiting game. On Thursday he sees the regular family Dr and hopefully they will have some insight into the ADD and whether or not he needs readjusting again. (we were in a similar spot this time last year) If that is the case then soon there should be some aleviation of his problems at school. It may help him to function to some degree and get us through the next while. Keep your fingers crossed!

[wolfie]

My 9 year old daughter was diagnosed with ADD when she was 5 1/2/years old. The neuropsychologist who evaluated her told me one thing that has held true. She told me that my hardest job would be to be my child's advocate. She said that no matter how hard the schools would try, I would need to always be reading and researching and teaching the teachers. She was SO RIGHT! I would say that easily 30% of our friends have children with some issue (Autism, Asperger's, ADHD, NLD, etc).The one thing we all agree on is that in order to effectively help our children we constantly work to be well-informed. I don't know how the Canadian school or health systems work but here are some ideas.

Keep pushing the school, but while you are waiting, read and learn everything you can. Getting a diagnosis is only the first step. Once the school has your son tested and diagnosed, the real work will be determining what help he needs and fighting to insure he gets it. You will need to be well informed and well-armed. Are his problems, attentional, organizational, sensory and /or social? Pschometric testing will include subjective input from you and his teachers. Keep a running list or journal of his problems and confer with his teachers.

Your Aspergers, Autism and/or ADHD societies should be able to guide you to a wealth of material to read and give you pointers and resources. You should be able to access this whether your child is diagnosed or not. Two books I highly recommend (no matter what your son is diagnosed with) are: "The Out Of Sync Child"-lots of great information and things you can do at home to help (particularly with sensory issues) and "The Unwritten Rules of Friendship" - great for building appropriate social skills.

Our county has a parent lliason for children with disabilities for each cluster of schools. This person is very knowledgable about how to get the school to test, the testing and setting up any assistance needed. See if your school system has one, this will be an incredible resource for you. Check and see if your school/county has a parent resource library. We have one and it holds a wealth of important and helpful information. If not, check the school library. It should have a section of material just for teachers- you might find something helpful there.

Are there social skills issues? Does your son have a guindance counselor at school? Meet with her and see if she can offer anything. Sometimes they offer help without a diagnosis- such as "lunch-a-bunch" groups or social skills classes- at a minimum she should be able to give you some advice. If your health insurance covers it, consider a child psychologist- many of them run social skills groups for kids with similar issues.

Academically- Many researchers feel that all of these diagnoses fall along a right brain continuum. Learn everything you can about right brain learning. Most classrooms and teachers are left or whole brained. I have found that many teachers just don't know how to reach right brain learners. My daughter's big problems are organizational and attentional. She gets the most benefit from having a tutor once a week. Many of these kids learn better one on one with no distractions. Having a tutor helps us insure that she does not fall behind academically. Here many of our teachers make extra money by tutoring outside of school. It is a big bonus when your tutor knows your school's curriculum and your son's teacher. If you son's issues are causing him to struggle academically see if any of the better teachers tutor on the side.

I am sorry to run on forever but hope some of this will help you. I know how hard it is to wait for the wheels of the school system to work. But while you are waiting you can be learning and looking into different options that exist to help your son. Hang in there, keep pushing and learn everything you can! Good Luck!

[spoonyspork]

Hi, my name is spoonyspork, and I have asperger's

Actually, at the time it was simply called 'a very minor form of Autism' but I'm fairly certain that's what it'd be called today.

I wasn't diagnosed until I was already learning to cope with it myself, and so my mom never opted to medicate me. That was probably the smartest thing she ever did - I probably wouldn't have gotten as far as I have did I grow up taking a drug to appear 'normal'.

Now, I'm not saying you shouldn't medicate your son. I had a HORRIBLE time as a child. I was bored out of my mind by simple classes, even more bored when they decided to put me in 'special' classes, thinking I was simply stupid (despite having taught myself how to read before the age of 4, and talking 'like a dictionary' whenever a subject that piqued my interest came up). I had no intuitive social skills, and knew no way to express my emotions verbally, so I was prone to psychotic outbursts, leaving me outside any possible circle of friends. I slowly pushed myself out of my shell though, learning to consciously 'read' people since I couldn't do it instintively, and letting my emotions out in writing rather than speaking. I was helped along by my 7th grade 'special ed' teacher, who was the one who finally saw my intelligence, had me tested, and quietly slipped me into gifted-honors classes.

These days, the only clues to me being any different than anyone else are my strange patterns of speech (people have told me it REALLY seems I'm speaking a foreign language sometimes), my flowery writing style, my strange, quirky sense of humor that crops up at all the WRONG moments, and the fact that I start to shut down when a group I'm in gets above 3-4 people.

My SO, who was never diagnosed nor medicated, is the exact same way, only magnified three-fold since he never really *had* to learn to cope until pretty reciently (home-schooled, not a whole lot of kids his age around, etc). We're both productive, successful (for our young ages) members of society though. A friend of ours who is also autistic (diagnosed and medicated when young, but has been off medication for several years), actually graduated at 15 and was accepted into quite a prestigious college the next year... he's still there, and doing well, even though they have to let him kind of go at his own pace. He's even quite eccentric in MY eyes.

I think the best bit of advice I can give you, living on 'the other side' is this: NEVER let anyone tell you there is anything 'wrong' with your son. He simply thinks differently, and sees the world in a way most others don't. You'll both figure out 'his' way of doing things, even if it takes years. There is nothing 'wrong' though.

[Rachel's Cavy Cove]

Ethan's problems lie in the social areas as well as sensory. The ADD is mainly inattentiveness. He cannot stay on task. He needs someone working one on one almost constantly. The medication has he