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Hope4Alex
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06 Feb 2007, 11:06 am

Hi All! First time poster here.

Lucky to have found you. I'm a mom to a wonderful 10 year old boy who was dx at age 9 although we knew something was different from much earlier on. He is my middle son, older & younger brothers, but the only one with this dx.

I'm a little hesistant to write my true feelings here because I would never want to offend anyone but I feel like I need an outlet to deal with the difficulties of raising a child like this and hope that I will be enlightened by the individuals who have dealt with this and those who are living this life.

My husband and I still struggle with the diagnosis because I'm just not sure all the signs are there. Although after reading on here a bit, the indications for this are so broad and it looks a bit more as though they were pretty much on target.

Alex learned to read and had many obsessions as a very young boy. His first that I can recall was letters. He loved to draw letters. He would copy off an old mass card of his gradmothers because he loved the script. It got to where he could address your wedding invitations at age 4! A few other obsessions I remember were license plates, streets signs, electrical towers, sun roofs, insects, countries. He taught himself to play classical music by ear when he was about 5 or 6. He was so unbelievably talented. I decided to try and nourish this interest and took him for formal lessons. That was the beginning of the end for him. He did NOT want anything to do with learning to read music, and that was the decline of that obsession. He is gifted in music~could possibly be an American Idol if he wasn't so shy and unsure of himself.

He has a few friends who put up with him~he's very bossy and not very nice to them but they still hang in there. He is very silly and likes to have fun too. Lately my concerns are his grades and the problems we're having with studying. He totally tunes out when it's time to study. He just doesn't test well. I can read him a question, tell him the answer, and ask him to repeat them to me and he can't. It's as if he totally turns off if it's of no interest to him. He also throws small tantrums when it's time to study. There was a time when he was obsessed with his grades (i long for that stage again). Now he's just moved on to another obsession, Club Penguin. Also I have concerns that he's lying and steeling on occasion~being very impulsive. He has some sensory issues, the hand cream and Chapstik being a few. Also the socks can be an issue. He went through a stage where I couldn't touch his food but has grown out of that. He is extremely sensitive to smells and that can be a PITA when it comes to dinner time!

I lose my temper with him but then he comes over and hugs me~he is very affectionate/loving with me and even after my rants, I tell him no matter what, I will always love him for whoever he is. We are very close.

Having two other children makes it so difficult because Alex is so time consuming. I sometimes feel like I'm cheating them out of time because of this. He does tend to throw off the family dynamics because we have to cater to him alot. He is extremely self centered, cannot understand the golden rule that I'm always reciting to him "do unto others . . ."

His self esteem sucks. I've had him to a psychologist who supposedly specialized in the field of Asperger's but he just fought me and carried on every time it was time to go there. I didn't see any results from a year of therapy. I don't know if that was the right decision. I don't if any decision I make with him is right. I am so lost on where to go and what my next step should be. We have an appointment with his Pediatrician on the 20th of this month and may look towards medication. We did try Metadate about 2 year ago but it had more negative effect then positive.

One more thing: I never spoke with Alex about his diagnosis. Is this a step I should take. Will this benefit him at this young age or make him feel like more of an outcast? He is very immature for his age and don't know how he would handle this.

Please, please . . . comments, suggestions, thoughts . . . whatever you have for me would be appreciated. Just don't be to mean, as I said, i don't want to offend anyone, just wanted to try and be open about my feelings.



TeeTee_Mom
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06 Feb 2007, 11:54 am

HI there! I am a mother of 5 with my oldest being my Aspie. First thing i want to address is yes, he should be told he has Asperger syndrome. It could be a great relief to him to know why he feels "different" from everyone else. Why he seems to be the square shape in the round hole of life if you will.
Another thing I told a friend of mine about her child who was dx recently. If I had a child and decided they would be a pro basket ball player and raised them to play basket ball, stressed all the skills needed, made them practice over and over etc but my child was not good at it because he only grew to be 5' tall...would I still just pretend he was a pro basket ball player, and keep forcing him to play the sport, try out for it, tell him he can be a pro ball player if he just tried harder to be like the other ball players...if he thought hard enough about it he would grow tall like they did...would that be fair of me to do as a parent? It is no different, really. Your son is not NT and he won't be able to do things a lot of NT kids do, so it is almost cruel to ask him to try harder to be NT....you try and be taller.

I cried and cried when we discovered it was Asperger Syndrome, not for me and my desires for my son but for him. For the fact I tried my best during pregnancy and his childhood yet some mystery "thing" came and altered his brain. However, he says he prefers his way of thinking and feeling over the way the rest of us see and feel things. He is super intelligent and super funny. I can't imagine a better person to be given to the world than my son.

Also, having other children: If your son had no legs and you had to carry him everywhere would you feel sorry that you did not carry your other children as much? It is a "disability" and we do need to cater their home enviroment to them, not completely as they have to adjust to the unusual behaviors of we NT but some things we have to give them. In your home he needs to feel safe and loved and accepted. It is ok to adjust things around him, you have to meet his needs too. Plus, the squeaky wheel gets greased most, right?

Have you read Tony Atwoods " Understanding Asperger" ? You can find it at amazon.com. It was such a huge find for me and helped our family with my son.

It will be ok, he will be ok, just be his best friend and his advocate.
Peace to you
Moe



alex
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06 Feb 2007, 12:36 pm

welcome! Alex is my name too. 8)


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Cernunnos
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06 Feb 2007, 6:14 pm

Hi Hope4Alex and welcome to WP.

I don't have Aspie kids, but I am an Aspie Dad and in a way I can see your concerns and frustrations from the other side. Whilst not quite the same, I can relate to having kids who have a different outlook on life. I think this way round is probably just as frustrating.

I've had a think about what you said and made some comments below. I hope it makes sense, because I sometimes have difficulty expressing myself even in writing.

Hope4Alex wrote:
Lately my concerns are his grades and the problems we're having with studying. He totally tunes out when it's time to study. He just doesn't test well. I can read him a question, tell him the answer, and ask him to repeat them to me and he can't. It's as if he totally turns off if it's of no interest to him. He also throws small tantrums when it's time to study.


There could well be something to do with his AS, but it also might be part of the response of a 10 year old to study. My 10 yr old daughter who is perfectly NT (neurotypical or though I hate to use the word, "normal") is exactly the same as your son. Her brother, who isn't AS, but exhibits some secondary symptoms, is always the first to start, first to finish, and keenest on school work.

When I was at school (and still today) my biggest problem was being able to organise myself to do things. I have always found the process of starting something is far more effort than when I actually get going on it. Maybe your son is similar. When you know that you're capable of doing something, but something inside interfers with you starting it, it is very annoying and I often get frustrated. I don't know why, or what the answer is - if I did I would have sorted myelf out by now :roll: Perhaps some routine will help him i.e. regular times for homework, family time etc.

Hope4Alex wrote:
Now he's just moved on to another obsession, Club Penguin.


Not just an Aspie obsession; my kids are really into this now. Let him explore it - it is a safe kids site, which will give him some chance to get away from the frustrations of the world. I know that it will be difficult to get him away from it, but again maybe that's where routine could come in.

Hope4Alex wrote:
He went through a stage where I couldn't touch his food but has grown out of that.


Sorry, I shouldn't really, but that's made me laugh :lol: . We have the same problem in my house, EXCEPT it's me that won't let the kids touch MY food. :lol:

Hope4Alex wrote:
I lose my temper with him but then he comes over and hugs me~he is very affectionate/loving with me and even after my rants, I tell him no matter what, I will always love him


All parents lose their temper with their kids from time to time. I see it from the opposite perspective. My kids annoy me, because they act in ways that frustrate me or cause me sensory overload (i.e. lots of noise etc). I've mellowed as they've grown, probably because I've found some coping techniques. It's not easy being a parent in any situation, and I know how frustrating having a different outlook on life to your kids can be. Easily said, but just hang in there and when things get tough take some deep breaths or take yourself away from the stressful situation for a few minutes. If I get annoyed with my kids for an irrational reason, I always apologise to them, and explain what happened to annoy me. He clearly loves you a lot, and this speaks volumes. Don't feel bad - it's a human reaction to a human situation.

Hope4Alex wrote:
I sometimes feel like I'm cheating them out of time because of this.


Sometimes I feel like I've cheated my kids out of things as well, but because I don't always know how to address their emotional needs. Even my two NT kids both think from time to time that the other is getting more attention. It's hard, but you have to address the needs of each as best you can. As they grow up, they will hopefully see the needs of the others and why they might get different attention.

Hope4Alex wrote:
I never spoke with Alex about his diagnosis. Is this a step I should take. Will this benefit him at this young age or make him feel like more of an outcast?


It's a difficult decision, but at the end of the day I think I would have preferred to know why I was different when I was younger. Now that I'm getting into middle age it's not so much of an issue - I've had to cope and I am comfortable with my self-diagnosis. At least if you know at his age you have some answers, and perhaps you as his parents could help himt o learn some coping techniques. Maybe some of his tantrums are born out of not knowing why and how he acts - it might just be plain frustration.

It's a real Catch 22 situation, because no one has ever had the experience of knowing both sides of the coin. I can only guess what it would have been like to have known earlier.

In the end the thing to remember is that whilst there isn't a cure, you learn to cope as you get older. Perhaps knowing helps you to work out appropriate coping strategies more quickly.



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07 Feb 2007, 12:15 am

Welcome to WP!

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Hope4Alex
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07 Feb 2007, 8:35 am

Thanks so much for those who have responded so far. It's alot to grasp, but some great things to chew on. I will definitely look into that book.

Cernunnos, thanks for breaking down the questions and taking your time. With each question answered, though, there does seem to be another question. I have alot of work to do and I know I'm just beginning.

Science test today~say a prayer. :wink:



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07 Feb 2007, 9:05 am

If you are sure that he has AS, tell him!

I was diagnosed at age 16, which was too late for me.
Me being different set me up for a lot of bullying, and not knowing why I was bullied only made it worse.
If I knew that I was different because of AS, I'd know that that's why they bullied me and not because I was some
unwanted being who just deserved it like I imagined back then. Also, teachers and others presumed I was normal
so they didn't do much to prevent the bullying. All they told my parents was "he doesn't fight back". That's school mentality today. Horrible as it might seem.

So do your son a favor and tell him about AS. At this age, you have the time to prepare school and social life for him and set up the required help-system to make him feel safe.

I was almost through with school when I was diagnosed. If school and parents knew it from the beginning, cautions would be taken and I'd perhaps be a happier man today.

So tell your son about his AS, so that he doesn't have to loathe himself like I did.

God bless you, your son and your family!



Hope4Alex
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07 Feb 2007, 10:40 am

I think I'm convinced now that I need to tell him but I don't even know where to start to tell him. I wish there was some kind of written dialogue to read from.

Does anyone have any thoughts or suggestions regarding medications? Is this an avenue others have taken~and if so, has it helped at all? What exactly is prescribed since there are so many issues to deal with? Also, do you think I should begin the pschologist meetings again~do people benefit from this?



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08 Feb 2007, 8:24 am

Welcome to WrongPlanet. :D