Where to go and how to push for help?

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I'm hoping someone can either relate to this and possibly point me in the right direction.

My son (my step son that I've raised for the past 10 years) has been on an IEP for the last 6 years and had academic testing done 3 years ago in grade 6. Over the last 2 years I've noticed different signs of him not being shall we say at the same age level of his peers. I finally was getting so frustrated parenting him among other things I started to see a psychologist. In April 2010 I took his academic testing report to her and as she finished reading the first out of 15 pages she said I need to get him tested ASAP for Aspergers. So here is my dilemma,

I spoke to his high school principal (new school completely freaked, not sleeping and hardly eating. Insanely worried about not having friends as 1 of 2 friends just recently "ditched" him) and was told that he should be re-evaluated for academic reasons and if the psychologist there thinks he should be further tested there will be a referral put through for that. He also said that I CAN NOT ask for specific testing. I'm putting him on the wait list regardless and this probably wont take place until the spring.

I spoke to his SPED teacher in June regarding my concerns and was told "well isn't Aspergers on the Autism spectrum?, well he can't have that because he socializes!"

Our family Dr. has no problem sending out a referral but in Toronto, ON it will take until December just for a consultation and possibly not until next summer for actual testing to be done. He's also on this wait list

Private testing here is between $800-2000, I'm currently on MAT leave and can't afford this right now.


Does anyone have any suggestions how I can speed this up? Am I asking to much or expecting things to happen to quickly? When a child needs help like this how do you just tell them to wait. Its getting scary now, I've taken him back to our GP because last week he came and told me "you know what mom, I think if I don't make friends its really just better to die". How to I continue to watch my child hurt like this without help for him.

Sorry for ranting, I just feel like I'm running in circles everyday.

(I've re-posted this from another thread)

Find the money and get him in ASAP for a full assessment if that is what it takes. It is that important.

I don't know how everything works in Canada, but even if you cannot ask for SPECIFIC testing, can you ask for them to re-eval your step son? Perhaps without telling them to look for AS they will find it on their own.

Others will disagree with me but I don't feel the diagnosis itself fixes all the problems. It is easy for us as parents to focus on getting the correct LABEL but sometimes (not always) that doesn't fix things. You really need to become an advocate for your son. Find out more about what he is struggling with and what his strengths are. Be the squeaky wheel at the school. Instead of focusing on labels with the Sp Ed teacher try focusing on the issues. Educate yourself. Do things to help him at home. When you find things that help, go into the school and request these things be done there.

It is hard road, especially when you are up against a stupid bureaucracy. Do your best to always focus on what is best for him and find ways to help him within the system.

Thanks for your replies!

It is the label but its not that I'm looking for. In Canada once someone is formally diagnosed with whatever it may be a 100 doors open (behavioral therapy, psychology services, funding, WAY more help in high school/college, help for siblings on dealing with the quirks etc.) Regardless if its Aspergers or not, I'm not all that concerned with, I just need to know what I'm working with. I've done a lot of reading and have tried to help him to the best of my ability and will continue to do so. I don't know how to help him get over the panic and anxiety of not having friends. He's starting high school Sept 7 and has been panicking since the end of July. It doesn't matter how much I try and talk to him that he will be OK and he will meet friends when he gets there. As he gets older things seem to be getting worse. Last year he got involved with kids that were into drugs because they were the only ones that seemed to talk to him. He was suspended for taking a knife to school, NOT to hurt anyone or threaten anyone but to show off. To this day he doesn't understand why everyone (the school, police and us) made such a big deal about it, he was simply taking it to show his friend. These are things that worry me inside and out. He's a follower and will do anything to get someone's approval and friendship. How do I teach him and help him stand up against things he knows we as parents wouldn't approve of? Or situations he knows are wrong but he's so afraid he will loose the friends he's tried SOOO hard to gain that he just goes with it?

Am I making any sense? I've started to think its all in my head.. lol

Trust me, dealing with bureaucracy will mak you feel crazy! Do EVERYTHING you can to help yourself not become overloaded!

I would get your son into counseling asap. Does Canada offer counseling through community services? The simple fact that he took a wapon to school should qualify him for some sort of counseling.

Call everyone you can. Ask your pediatrician for a referral. Start knocking on every door to find some help for your son. Keep a log of all of your son's difficulties so you have documentation.

It's not all in your head. You are a good step-mom to try and help your son!

It's the same here in my state in the US. Once you have an autism diagnosis the school is required to offer and pay for treatment. We also have a state law that requires insurance companies to cover autism (and major mental disorders such as bipolar, major depressive disorder, etc..) as a medical diagnosis. The insurance cannot restrict the number of visits and must offer the same coverage as they would for any other medical condition under the plan. Without the diagnosis I would not have these services available to me. I also would not know where to look for help, what to read, what to do. Now that I have our diagnosis, things are getting better - I know where to look for help. Now I know what we are dealing with. What a terrible state my son must have been living in for 10 years before we got the diagnosis - all his symptoms were treated as behavior problems.

That's almost how it is here in Ontario. As it stands he's already in special education and getting extra help as the testing 3 years ago definitely showed a learning delay but reading those papers over again 3 years later, someone missed the red flags. I don't care who it just needs to be corrected and he needs help. I've got an appointment with out family Dr this Friday to talk about the "I'd rather be dead" and "I wonder how many Advil's it takes until you die" thoughts and feelings. Is it just me or do you get to a point you feel like you have to beg and plead to get somewhere?

You are making perfect sense.

With or without a label from the school, one thing you can start doing is looking for how an issue would be dealt with if the child was on the spectrum. The knife incident, for example: members here would be busy explaining to you who how AS can lack theory of mind (not realizing that everyone doesn't know what they know) and can be very logic based (you have to find the logical argument that makes sense for him, and that can take a while, especially when it is us "illogical" NT's having to formulate the arguments.) See if parenting him on the assumption that he is AS helps you out.

Friends get more complicated. And, for the record, plenty of our kids DO have an interest in social interaction. I can't say for sure if they're motives are the same as an NT child's, but most of our kids do pursue a social life of some sort. My son has always been a people seeker, and a touch seeker. Partly sensory, and partly because what use is talking out all your great ideas if there isn't anyone around to listen? His issue isn't in wanting the social interaction, but in managing it appropriately. Give and take is really difficult for him; the idea of subjugating his desires to those of a friends ... really hard. And so on. With him, we've focused on the goals, and applied logic: if you want friends to play warhammer with, you have to act in such a way that they want to keep the friendship. If you ignore what they want to say or do, they won't want to keep the friendship. And so on (round and round and round again, most of the time - we still here a lot of, "why?!"). Your step son seems to have almost over-absorbed that lesson, which is also something AS kids might do. But they pretty much always get the mimic wrong, which makes it even more frustrating: "but I like Big Band X just like the other kids do, and I talk funky slang just like they do, so they should like me, right?" Um, no, not quite how it works. The world can tell when you are trying to copy, instead of generating a sincere interest. Once someone is your friend, you can go with the flow on something you would not have otherwise taken interest in, but taking on an interest in the hope of making friends doesn't work.

On the rest ... I can tell you that the road to getting the right label was long for pretty much all of us. Ours was a solid year from the first mention to implementation. And that seems to be speedy.

So ... figure out what services and accommodations you want on the assumption he is AS, and see if you can sneak them in.

Hello BrennaKing

First off, welcome to the forums. Based on what you have written thus far, I don't know whether your child has asperger's syndrome or not. But even if he does have asperger's syndrome, that doesn't seem to be the source of your current problem. Your current problem is due to your child basing his entire self worth on the opinions of others, and whether or not he has any friends. He is so obsessed with other people, that he feels his life is worthless without some friends, and that is what you need to address.

So, to that end, I would sit down with him and figure out why he is so obsessed, and worried about having friends. Is it because he is being bullied and picked on at school, and is thus looking for some protection via a group? Is it because he is bored and wants somebody to play games with? What is his motivation for having friends? Beyond that, you need to talk with him, and let him know that having 'friends' is not the most important thing in life. Desperation to have friends does nothing but make him lose friends, and then make him miserable. You need to teach him that friends may be nice, but they are not required to having contentment in life. The sooner your child learns to be happy with himself, without depending on the approval or acceptance of others, the better off he will be.

Telling him that he will make more friends eventually, or signing him up for classes on how to make friends doesn't address the real issue. While I am not opposed to teaching your child how to be a better friend, I do think you need to first teach your son that having friends is not the main goal of life, and that he needs to learn to be happy on his own before he starts looking for friends. Otherwise, he is just going to do stupid things like bringing a knife to school in order to impress others. It isn't as though friends are bad things. I have a few friends, and I enjoy spending time with them. I am just aware of the fact that I don't need them to be happy, and as such I am not going to cause myself problems by basing my entire self worth on having them. Your son is free to enjoy interacting with other people, and if that leads to him making a friend, then so be it. But making friends should be the optional bonus, not the main objective. Because when getting the approval and acceptance of others is your main objective, you only wind up doing stupid things for the entertainment of others, and you don't make any real friends.

If your child enjoys the company of others, then you might want to consider getting him into some events where he can be with other people, and have some fun. Sports can be an option, provided that your son is physically coordinated. Other options might include boy scouts, or perhaps multiplayer video games. There is also the option of table top games, or card games that your son might enjoy. Most table top game stores offer tournaments, or something else that your child may be interested in. But keep in mind that going out, and doing after school events with other people should be primarily done with the purpose of having fun, and enjoying the activity. If he happens to make some friends there, thats great. But don't make the activity all about having friends, because then you just wind up with the wrong priorities, and your child just gets more desperate, and more convinced that he MUST have friends.

Beyond that, if you do believe that your child has asperger's syndrome, then you may want to read about the condition, and learn what you can. I have nothing against asking the school for assistance, but if your going to ask for assistance, then you need to know what to ask for. Simply panicking and demanding a label, or assistance from the school, doesn't address the real problems. To that end, if you are interested in learning more about asperger's syndrome, I would recommend taking a look at:

http://www.asdstuff.com

There is a free book there which contains a lot of useful information for parents who are new to the diagnoses, and just trying to understand their child. It is basically autism 101. It may help you to understand more of what is going on so that you know what to focus on.

You hit the nail on the head. My husband and I have talk and talk for years about friends with him. This isn't a new behavior. I can remember when he was 4-5 and being obsessed with making/having friends. His friendships never last. He's seen umpteen counselors and psychologists in his life as he also deals with huge abandonment issues. The friends issue is right at this moment. Last week was the dentist, chipped front teeth from chewing scissors and clippers instead of the "chewies" I had got for him.

Thank you for the asdstuff link. I've read through that website a few times. I may be new at speaking about the syndrome but have also tried to make myself more familiar with the signs, symptoms and behaviors as much as I can. Its the tools to help him, or words to use that I'm seeking guidance from others who's children might have gone through something similar because when I try and talk to him or explain things he pretends he understands when he really doesn't.

Sorry but that hit a nerve when you said - "if you do believe that your child has asperger's syndrome, then you may want to read about the condition, and learn what you can. I have nothing against asking the school for assistance, but if your going to ask for assistance, then you need to know what to ask for. Simply panicking and demanding a label, or assistance from the school, doesn't address the real problems."

I'm not one to argue my case as yes, I am still new at this. Demanding is the only way to get the schools to become involved as they would prefer to have it sit on the back burner for years. It took me 5 years to get him tested for a learning disability because each teacher disagreed. Turns out his cognitive memory is in the 1st percentile among many other things. My son is currently on 11 waiting lists at different clinics that have all been referred by our family doctor but if the school is onside the wait time goes from 16-24 months to 12-16 months.

What else am I supposed to do? I feel completely alone and frustrated.

Hopefully, coming here can help with not feeling so alone, even if it isn't likely to ease the frustration.

There often are no easy answers because each child is an individual, and multiple things may go on. We all start by observing - action, reaction. What are the triggers? What are the stress points? And so on.

The nice thing about Tracker's book is that he does offer some practical suggestions. Those are things you can try out to see if they make a difference. You don't need to have the right label before starting to see if you can find the right process. Tracker is AS himself so if he doesn't always correctly read between the lines on what parents have and haven't done, and do and don't know ... well, its a pretty small issue compared to how much invaluable information he's given all our parents here. Try out some of his ideas and see if they work.

Your description of your son's social issues in the latest post reminded me of an experience I had before marriage and children. I was volunteering with a group of 7th graders (can you say "sucker?" for accepting THAT assignment knowing nothing about pre-teens?) and mid-year a boy joined our class. Everything went wrong with him from pretty much moment one. After the second class he came back into the room crying, asking me, "why doesn't anyone like me?" My honest observation at that point was, "I think you try too hard." He was adopting all these moves and sayings from popular culture and just coming across as fake. He was too far in everyone's faces, and he was too busy acting "cool" for anyone to see any of his real gifts. I learned later that he had been kicked out of program after program (he got kicked out of the one I was volunteering in, as well - not my choice, out of my control, but he hit some kids outside of class). After we got our son's diagnosis, my thoughts flew back to that boy, and I've wondered many times if he was undiagnosed AS.

It is almost impossible to figure out the social missteps when our kids hit middle and high school, so you are at a disadvantage there. But when my son was in elementary school, I made a strong effort to keep his play dates here, at our house. I wanted to see where things went wrong, and obtain observations I could use to help him break down the situations later. It helped a lot.

Anyway ... I've to run. Pick up time at school.

Breanna-You are taking all of the right steps. I know it is frustrating with all of the waiting, but in the meantime, there are things you can do to help your son. Many of our children have multiple issues, so sometimes we just have to focus on what is the most important at the moment. I think Tracker is right, the obsession with having friends is the most important thing at the moment. I think counseling to get to the root of this right now is the most important thing you can do. Tracker did give good ideas about trying to get involved in things to have fun, and then if he makes friends that is great!

I was single for a very long time, didn't get married until I was 39. I remember those feelings of desperation, and it seemed the more I tried, the harder it was. I finally decided to focus on myself, and becoming the best person I could be, and then finally found my mate. I think DW was right. Maybe your son is trying too hard. But it is hard for him to see this right now. I would take his talk about wanting to die and stuff seriously, and work on getting him into a psychologist.

You know, even with a diagnosis, sometimes I feel as if the doctors and the schools can only do so much. As a parent, we can just keep researching and talking to our children and helping them as best we can. After all, we know them better than anyone else!

I am sorry you feel all alone, but if you keep coming to WP, I think you will feel a bit better and you will probably learn a lot about your son!

Hang in there!! !!

Thank you all. I do appreciate every word. Tracker I'm sorry if my reply sounded harsh. WOW, that book is 181 pages! With a 4 month old it might take awhile but I will get through it.

I really thank you all for everything.