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 4.97 (Highly recommend) from 70 votes (1251 Visits) |
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Aspergers Syndrome - A long story cut short |
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by kez1969  (April 2008) (rank 500+) |
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Dj is now 16, but I knew he was special when he was born. As Dj grew, I noticed he was very smart but really loved his routine. There were lots of little things i noticed about him as he grew but I didnt know how to approach someone about it, they might think i was crazy. After starting grade 2, his teacher approached me and told me he was overobsessed with sonic the hedgehog...he lived, ate, breathed it..all his stories were about it, his life was literally sonic the hedgehog. Ok, i knew there was something going on, but again, how do i approach my doctor and what do i say.
Time moved on, more things were coming to light. Being quite excentric, obsessive, finding it hard to mix with other kids, really bad social skills, not being able to read non verbal cues (body language), always getting in peoples bubble space, got upset when the mower started (his ears were sensitive to that noise), picking with food, the list goes on.
When entering high school, it really hit home that something was going on. Going from classroom to classroom really through him out. Then the bullying started. That bought out some things in dj that was so not part of who he was. The bullying got really bad, that bad that the high school payed for Dj to go to private councilling. At this place, a wonderful phsycologist suggested after two meetings, that dj might have aspergers syndrome. He didnt know alot about it but he was nearly text book. An iq test was done first, it was through the roof! then the rest of the testing was done. Yes, he had aspergers syndrome. Dj and I cried when the diagnosis was made. It was a relief that i wasnt crazy...and dj felt relief because he knew he was different but now he knows how and certain feelings he had he didnt understand and now he knows. Alot of our story cant be put into words.
We had only recently started Dj off on medication for his own wellbeing and because he felt as though he needed a bit of assistance. I put it off for a long time and he was only diagnosed with AS last year at the tender age of 15. It is still hard everyday, AS + teenage hormones dont go down together really well.
We dont go out very often because Dj doesnt handle it very well, especially restaurants, being socially immature inhibits him in that way. He also speaks off-topic ALOT, we joke around and call it his 'verbal diahherea'...Dj's has recognised this wording now and it actually has helped him recognised when he is doing it. We were at the local markets the other week and my hubby and i were buying a ticket in a raffle for a cause and dj was standing there and said out of the blue, 'gee, i would love to be a bird'. This we are used to hearing (off-topic stuff), but the poor guy we were getting the tickets from thought it quite strange...the look on his face said it all. We find it quite funny at times and we just answer dj.
Dj is always the first one to offer a compliment or the first one to notice if you have had a hair cut. He notices changes even if it is minute. He is the most caring, loving child and always has been. Although recently, before putting him on medication, he got very verbally violent and would hit walls out of frustration. This was so 'not him', so one of the reasons we finally gave in and sort medication. He comes up and gives me cuddles again, alot. We still have our odd outburst but alot better than it was.
Another thing, you have to explain things in great detail. For example, to do the nightly rubbish. You have to say 'go to the kitchen, get the rubbish out of the rubbish bin there and take it down and put it in the wheelie bin'. You cant just tell him to do the rubbish. Same goes for cleaning his room. You have to write a list of things he has to do and how to do it.
He cant just catch a bus either unless you go with him or you give him a written list of what to do and where to go. You cant just tell him to catch the no.2 bus. Everything has to be in great detail so he doesnt get confused, thus leading to frustration and him getting lost! Just remembering he has a very high IQ. So with everyday things he has trouble but again, you can have the most detailed, mature, stimulating conversation with him too.
A little bit of a rundown:
Named for a Viennese physician, Hans Asperger, who in 1944 published a paper which described a pattern of behaviours in several young boys who had normal intelligence and language development, but who also exhibited autistic-like behaviors and marked deficiencies in social and communication skills.
In spite of the publication of his paper in the 1940's, it wasnt until 1994 that Aspergers Syndrome (Aspergers Disorder) was added to the DSM IV and only in the past few years has AS been recognized by professionals and parents.
Aspergers Syndrome is a neurobiological disorder. Persons with AS show marked deficiencies in social skills, have difficulties with transitions or changes and prefer sameness. They often have obsessive routines and may be preoccupied with a particular subject of interest. They have a great deal of difficulty determining proper body space. Often overly sensitive to sounds, tastes, smells, and sights. The person with AS may prefer soft clothing, certain foods, and be bothered by sounds or lights no one else seems to hear or see. Therefore, many behaviors that seem odd or unusual are due to those neurological defferences and not the result of intentional rudeness or bad behavior and most certainly not the result of 'improper parenting'. By definition, those with AS have a normal to high IQ and many individuals exhibit exceptional skill or talent in a specific area. Because of their high degree of functionality and their naivete, those with AS are often viewed as eccentric or odd and can easily become victims of teasing and bullying.
I have also heard it being referred to as High functioning autism.
As a child, AS was alot easier to deal with, but as a young adult it is hard and i mean hard. I have researched alot and asked alot of professionals about this so i can learn more and more.
My current mother in law (who is Dj's step Nana)has been a great source of help and support as she works with kids with special needs and has been able to give me some great advice too. The whole family has been very excepting of Dj's condition.
Life may not be perfect, but i will say, my son is.
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Re: Aspergers Syndrome - A long story cut short
That's awesome... I actually had my 2 yo tested for aspergers recently as my family has a bit of tendancy towards austism and such, and I had noticed he was a bit quirky. Turns out he just has anxiety and obessive compulsive disorder.... which means he also likes his routines, does his puzzles upside down and repeats everything said to him a million times. He also has a higher than average IQ, (they only said higher than average, didnt actually tell us what it as), incessantly labels everything and is terrified of anything he can't control, ie the sound of the vacuum cleaner, the coffee machine, being outside when its windy... birds, but only when they are looking at him... you get the idea. Its great that you know how to help DJ now, Im sure its made some huge improvements and his life that much more enjoyable.
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Re: Aspergers Syndrome - A long story cut short
Hi Kez, This comment may seem some-what delayed, since you wrote your article on your son DJ back in April, but I have only just stumbled upon this wonderful site and yours was the first I set eyes on. I have to say, that you wrote the most amazing story on DJ and I can honestly say, that you wrote it from the heart. We have something in common, I have a 20 (almost 21 yr old) with Aspergers. He was diagnosed when he was 8 years old. The way you describe DJ, I can relate to, as my son sounds like a carbon copy of DJ. He has his favourite chracters that he enjoys which have basically ruled his life. He loves pokemon and yugio and dresses up whenever he gets the chance. It can be a little bit funny when out and about and you have a "normal" looking 20 year old dressed up as a pokemon character...the looks on peoples faces are priceless!! But that sort of thing is what gets him by everyday. Back when he was in main-stream school, my son would only write (to the best of his ability) about and draw pokemon characters. The teachers would get annoyed and complain to me that he needs to do something else. I was really annoyed at this. At least he was writing and drawing, rather than doing nothing. Kez, you are so very lucky that you have been able to hold onto your son as long as you have. When my son was 15, I had to relinquish care of him. He got so violent, that no one in the house was safe. Even when we tried to sleep, my son would be walking around with anything he could get his hands on to use as a weapon. One night it was an iron bar that he got from a clothes stand that he had dismantled. He threatened to kill us all with guns and we were all scared for our lives. I made the gut wrenching decision to protect everyone, including my son, by having him taken into care. I had been abused by him before and I didn't want anyone else getting hurt or even worst, killed. That was over 5 years ago now. My son has been out of care for 2 years now, he lives independantly with support...he does struggle, but we are always working on that...it's a day to day struggle at the moment...it's very very hard...but I have to say, that he is a changed person, and I don't see the aggresive side come out much at all. But given the right circumstances, he can go off. We have a much better mother and son relationship now, As you have said in your story, there is so much to say that it can't all be put into words in this type of panel, but I have to say to you Kaz, DJ and the rest of your family, keep up the great work and I am so envious of the way you have held everything together up to this point. For those that maybe ask "what type of medication does someone take for As? Well there isn't anything specifically for asperegers, but by treating some of the symptoms or ailments that arise from having AS, you can assist in relieving things like anxiety, depression and aggression. My son takes zoloft for depression and a anti-psychotic medication called serenace for anxiety and aggression. After years of tring different medications, I have found these to be the best combination for my son. I know that there have been reports of zoloft being associated with suicide, but that has been in isolated incidents, and as with any medication, it has to be discussed seriously between the parent, patient and medical practitioner about the pro's and cons...what suits one person, doesn't suit another, it's a personal choice. Gotten side tracked now...thanks for sharing your story and I wish you well. It would be great if you could keep us all up to date with DJ as he progresses through life. Cheers
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Re: Aspergers Syndrome - A long story cut short
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Re: Aspergers Syndrome - A long story cut short
Hey, I have found too that where i live there isnt alot of support here if any. I have done it much on my own although as i said, my hubbies family has been great when i need it. Somedays, i dont know where to turn, what to do and i feel very alone and feel like i am failing as a mother. I want the best for my boy, i really bust my butt to do the best i can for him. I know too, from experience, that there is a point that you can be a mum, a real mum and guide them the best you can and be firm and let them know what is exceptable. You sorta have to try and find a medium so that it isnt much of a strain on all. AS never goes away but each family and yourself will find ways to deal with AS and help your son to be the best he can be. It is all trial and error. Like you would have seen, we have just started him on medication but it has its on days and off days. Djs bad days are still really bad, i cry, he cries and we yell at each other sometimes but we always hug...and we do alot of that. That is another part i treasure :)
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Re: Aspergers Syndrome - A long story cut short
Hi Kez,
I know I SHOULD do it, but I know my friend has cut herself off from other friends and family that dared suggest anything was wrong. He is her first child and is like a mother bear on the defensive if anyone dares suggest anything - as her sounding board, I hear it all!!!!! My mother-in -law knows them well and she is a very experienced nurse, she wholeheartedly agrees with me, but she too is reluctant to mention it! She raised it with the childs paediatrician, but unfortunately, the family moved interstate before any assessment was made. He suffers from febrile convulsions ( they have at times thought it was epilepsy, but it only occurs when he spikes a temp) He has continually been in and out of hospital. I can only hope that now he is at pre-school full time, it is raised by the school. It was raised by the previous pre-school teacher and she wanted him assessed by student services, she discussed it in depth with me and I supported the idea that the assessment take place- I told her that it can't possibly hurt and if it makes his teachers happy, then they will be more proactive with him in the classroom. She was a little taken aback and didn't ring or answer calls for 2 months, when she did, she said she had refused the assessment as she didn't think it was necessary and shortly after they moved interstate with her hubby's work. I really am reluctant to be the one that brings her world crashing down. Not sure what else I can do apart from being her worst enemy in the world by saying I think her son needs assessment! Her second son is delightful and I think bears the brunt of his elder brothers anti- social behaviour at times. My friend NEVER mentions it to me, but does to a mutual friend ( who thinks there is nothing wrong with the eldest except that he is just too bright for his own good and gets frustrated!!! She is also very defensive of his behaviour!) I know she sheds many tears of frustration, but will never say a word of it to me since I supported the idea of his being assessed. I feel like I am between a rock and a hard place!
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Related keywords: aspergers, syndrome
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