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Subaru
Butterfly
Joined: Apr 05, 2008
Posts: 15
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 Posted: Thu Apr 17, 2008 3:01 pm Post subject: Confirmed :'( |
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Not sure what to think, how to feel, etc. I am I relieved, sad, confused. I don't know. I know I am scared for what the unknown is ahead.
The doctor said that he cannot formally diagnose Subaru with Aspergers until her has observed him for a couple of years, however he is extremely suspicious and says that it is 'probable Aspergers' and treating it as such. With all the research I have done the past couple weeks I should have seen it coming and been prepared for those words ... but it is overwhelming nonetheless.
I just know how challenging the past few years have been and am terrified of what is in store for the rest of his life. I know there are positives to this conditions but right now but the negatives have me really uncertain about the future and whether I have the energy, strength or emotion to do this .... but know that I have to. How will Subaru feel about it? How should we tell him at three, almost four? Should we make nothing of it and see if he asks one day or make it a way of life?
How do we parent from here? How do we know what is his uncontrollable behaviour and what is him being spoilt?
I also feel isolated because I have never been buddy-buddy with women (always related better with men) and cannot speak with my mom who is in denial of this. So I feel so alone in my confusion.
Thankfully MIL was there for the whole appointment and understands it so much better, but she lives and works so far away for me to go to her for personal support. She has taken him for the night tonight and I have spent my alone time crying so far.
A few days ago it was 'no big deal'. It was a light bulb moment. Okay, so that why things are this way .... let's move on. But today, hearing those words made it reality and am not sure how to feel now. DH is at work until later tonight, so am enjoying my alone time to cry.
Anyways, he also changed his meds today. Took him off Ritalin and starts Concerta 27mg tomorrow but will be sticking with the Clonidine.
Anyways. I am off my soapbox now and am going to do some mindless surfing for a bit. |
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Aranittara
Raven
Joined: Mar 03, 2008
Age: 17
Posts: 118
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| Posted: Thu Apr 17, 2008 3:28 pm Post subject: |
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It isn't as bad as it seems I have lived with AS my whole life and I don't take advantage of that fact If you instill values like no lying, no swearing, no stealing etc from a young age most aspies will integrate these rules and follow them most of their lives I have
_________________
All of us are computer programs running in a box somewhere I'm just one of the few endowed with the knowledge that it is a simulation. and no one seems to believe me *sigh* |
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EvilKimEvil
zoo-music girl
Joined: Sep 27, 2007
Posts: 3038
Location: CA
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| Posted: Thu Apr 17, 2008 4:09 pm Post subject: |
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Yeah, it's really not that bad, and there's a lot of cause for hope, especially because he's still very young. With the right kind of support, aspies can grow up to lead fulfilling lives doing what they love to do. Here are some suggestions:
If he becomes obsessed with anything that has anything to do with an adult job or hobby, encourage that, and try to steer him in the direction of doing something with it that could lead to future income or educational opportunities.
If he has sensory issues, try to be patient and understanding. Accept that it's beyond his control, but suggest ways to deal with it.
If he's isolated socially, don't criticize him for it, and don't try to force him into social situations outside of his comfort zone. Instead, work on social skills gradually, with a lot of encouragement, support, and acceptance.
If he likes having a routine, try to establish a good routine that could last throughout his life. If you encourage a young aspie to wake up early, exercise every day, eat healthy foods, etc., these can easily become life-long patterns.
If he does seemingly strange things like rocking or hand-flapping, try to accept these as harmless things that are normal to him, and just help him to gradually cut down on doing these things in situations where it could draw negative attention to him.
Most of all, try to encourage the good things about AS (honesty, intense focus) while working on the "rough edges" (how to avoid being too honest, how to make small talk, etc.).
I'm an adult aspie, and yes, there are still challenges, but understanding how I am different and what I need to do about it goes a long way. |
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DevonB
Pileated woodpecker
Joined: Mar 14, 2008
Age: 39
Posts: 198
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| Posted: Thu Apr 17, 2008 4:29 pm Post subject: |
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The only thing I can suggest...adding to the above notes of encouragement....
I had my son switched from Concerta to Strattera. It worked extremely well at reducing the mood swings and moodiness (which I felt so badly for my little guy when they happenned) and it improved his anxiety...which was a major bonus as now his aggression has improved.
But don't loose strength. He's yours...and you know him better than anyone. Many doctors don't have the experience with Asperger's to diagnose it properly (especially when you look at the DSM-IV). Given time things will work for you... |
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rachel46
Snowy Owl
Joined: May 07, 2007
Posts: 168
Location: Midwest US
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| Posted: Thu Apr 17, 2008 4:42 pm Post subject: |
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| Quote: | I also feel isolated because I have never been buddy-buddy with women (always related better with men) and cannot speak with my mom who is in denial of this. So I feel so alone in my confusion.
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You are absolutely NOT alone as long as you have a computer and this message board. We are all feeling and experiencing the same things here. I have some women friends but not a single one of them knows what it's like to have a kid on the spectrum so that's why I come here because everyone here "gets it".
This board will help you. |
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alex
Developer
Joined: Jun 14, 2004
Age: 22
Posts: 6270
Location: DC Metro Area
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| Posted: Thu Apr 17, 2008 4:45 pm Post subject: |
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Go to a different doctor who actually knows how to diagnose a kid in less than a few years.  |
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886
Honking Antelope
Joined: Jan 16, 2008
Age: 18
Posts: 2553
Location: Lost in the Darkness
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| Posted: Thu Apr 17, 2008 4:49 pm Post subject: |
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He really wants to observe him/her for a year? Sounds like he just wants your money, to be really honest.
Find a new doctor asap.
_________________
If Jesus died for my sins, then I should sin as much as possible, so he didn't die for nothing. |
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BugsMom
Sea Gull
Joined: Apr 20, 2007
Posts: 200
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| Posted: Thu Apr 17, 2008 6:08 pm Post subject: |
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| rachel46 wrote: | | Quote: | I also feel isolated because I have never been buddy-buddy with women (always related better with men) and cannot speak with my mom who is in denial of this. So I feel so alone in my confusion.
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You are absolutely NOT alone as long as you have a computer and this message board. We are all feeling and experiencing the same things here. I have some women friends but not a single one of them knows what it's like to have a kid on the spectrum so that's why I come here because everyone here "gets it".
This board will help you. |
Yes, this board is a wonderful source of support....welcome, Subaru! On April 20th it will be one year since my 6 year old was diagnosed. I registered here and it was a relief to find people whom I could relate to.
It's so overwhelming at first, I know! But things will get better.  |
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gbollard
the oncoming storm
Joined: Oct 06, 2007
Age: 39
Posts: 2925
Location: Sydney, Australia
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| Posted: Thu Apr 17, 2008 6:11 pm Post subject: |
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First of all, let me say
Confirmed
Brilliant.... Really... Asperger's isn't too bad at all.
There's this learning curve that makes a lot of things harder but we all seem to get there in the end.
Have a good read through my blog (see my footer). I'm an aspie and my eldest child (7) is one too. My youngest (4) is High Functioning Autism - which is almost the same as aspergers but with a speech delay.
The initial diagnosis is difficult for NT parents but don't give up. Ditch your "perfect-children" friends, they'll only make you uncomfortable and move to a more accepting crowd. It's all for the better.
One last thing - "the apple doesn't fall far from the tree". Aspergers is Genetic. If you child isn't adopted, chances are that someone close to you has it - your partner, uncles or grandparents. Find the aspie in your family and talk to them.
_________________
Gavin.
http://life-with-aspergers.blogspot.com/ |
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Jennyfoo
Velociraptor
Joined: Oct 06, 2006
Posts: 437
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| Posted: Thu Apr 17, 2008 9:34 pm Post subject: |
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I agree with Alex: go to a different Dr.
There are tests that they can do to see if he is on the autistic spectrum. ADOS, is one and it will tell in less than 1/2 hour if he is autistic. My 9 y/o DD had an eval done at UC DAvis MIND institute to verify that she was eligible to participate in a study and it took less than an hour for them to say yes, she has high-functioning autism. We had provided a lot of background info on questionaires before the visit as well. |
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nannarob
Phoenix
Joined: Apr 14, 2007
Posts: 1298
Location: Queensland
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| Posted: Thu Apr 17, 2008 10:40 pm Post subject: |
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I am the grandmother of two aspie boys. I understand your disappointment and grief, but I will assure you that it will abate. Most NT parents accept their aspie children totally with time and wouldn't want them to change.
You need the energy to get through today. Tomorrow you will have enough energy for that day....ah, the wisdom of age!
Both of you would benefit from counselling. Is there an aspergers group near you?
The initial diagnosis is difficult for NT parents but don't give up. Ditch your "perfect-children" friends, they'll only make you uncomfortable and move to a more accepting crowd. It's all for the better. (gbollard).....
.....exactly right. Other parents can be destructive and cause you grief. But there always parents who are accepting, especially among 'weird' or hippy types.
All the best to you as you learn more and set in place guidelines.
Robyn
ps sometimes a break will be good for you and your child. I sometimes take one of my grandchildren for a few days to give everyone a break. I live 100k from the family, but I don't work!
_________________
NEVER EVER GIVE UP
I think there must be some chronic learning disability that is so prevalent among NT's that it goes unnoticed by the "experts". Krex
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Smelena
Cure Neurotypicals Now!
Joined: Apr 02, 2007
Posts: 2120
Location: Australia
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| Posted: Fri Apr 18, 2008 4:22 am Post subject: |
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Hello Subaru,
How old is your child?
I have 3 sons aged 9, 8 and 4. Last year my older 2 sons were diagnosed with Asperger's.
I cried like a tap for weeks. It was fear of the unknown and worrying about my sons' future.
Then I joined WrongPlanet and met heaps of fantastic adult Aspies who encouraged me and my sons. I've had heaps of great advice. I've also met a few adult WrongPlanet aspies which has made me feel comfortable that the boys are going to turn out okay.
Nannarob who posted above is my Mum and she is always there for respite for my sons or me. 
I think my sons are more extreme in every way. They are more happy, more creative, more fun .... but also more extreme in meltdowns.
I recommend you look around all the forums.
If you want to see my cool sons and our story regarding life with Asperger's, click on the links in my signature below.
Helen
_________________
To see my family and my advocacy efforts: http://au.youtube.com/watch?v=JR03uSFQf6Y and http://au.youtube.com/watch?v=7-ZBxFYFvuA |
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annie2
Toucan
Joined: Sep 18, 2007
Posts: 273
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| Posted: Fri Apr 18, 2008 6:49 am Post subject: |
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Hi Subaru,
Don't worry - heaps of us have been there and felt what you have re a diagnosis. My son was diagnosed two years ago and I still burst into tears the other day when I was confiding in a friend about it. I understand your fears for the future too. I actually posted a thread here a couple of weeks ago called "What will my child be like in 10 years time?" (you may find it if you surf through), just to get some encouragement that things would improve in the future.
In some ways I found my son's diagnosis a relief, as it explained and clarified a lot of behaviour, and I was then in a position to know what I was dealing with and could really start being able to help.
The best thing for me is that I love my son exactly the way he is. Sure, I wish he didn't have some of the meltdowns etc., but his AS also makes him such a unique and special person. If I had the choice to swap him for an NT version, I wouldn't do it - not for my sake anyway . . . maybe for his sake if it meant avoiding a lot of knocks in life.
Here's hoping that your journey with AS has lots of along the way, even though it is often a rollercoaster ride. Make sure you post about anything you want and opinion on, as there are lots of clued up people here who have really good support and advice. |
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GreatCeleryStalk
Pileated woodpecker
Joined: Mar 19, 2008
Age: 25
Posts: 189
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| Posted: Fri Apr 18, 2008 8:45 am Post subject: |
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When I was a child in the 80's the guy at the end of every GI Joe episode used to say "knowing is half the battle."
I suppose, that having what many people consider to be an ASD, it's difficult to understand why someone would be upset that a child has an ASD; it doesn't mean they'll never accomplish anything, just that there will be a different way of doing it. There are many people with ASD's who are successful and have friends and careers and manage to cope in the NT world.
Social situations will probably always be difficult and the earlier you start social skills training the better. Nothing will help your child achieve its potential more than a supportive environment. |
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Subaru
Butterfly
Joined: Apr 05, 2008
Posts: 15
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| Posted: Fri Apr 18, 2008 11:42 am Post subject: Thanks everyone |
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You could never imagine how much your words and this board has helped already.
As for switching doctors ... I live in a smaller rural community in Canada (Medicare) and this Doctor is considered our best option. I already took the book 'Asperger's Answer Book' out from the library the other day and just started it. Subaru's doctor also gave me a book called 'Asperger's Syndrome: A Guide for Parents and Professionals' that I will start next. He also e-mailed me a ton of links, articles and vid clips to watch. We go back to see him on May 15th.
It IS a relief to know that his behaviour is explainable. I always wondered why though. Even yesterday after the appointment my MIL took Subaru and I out for lunch and he was trying to say 'Hi' to the people in the next table and became offended when they don't say 'Hi' back. Most would say that they are being rude but it also shows how he isn't scared to talk to complete strangers either. He said 'hers don't say hi to me either'. When we went into the doctor's office, he went straight to the building blocks puzzle and started lining the blocks up in color sequence. Go figure. I thought it was cute and was proud, but just another testament to this.
It is really difficult though when we have meltdowns cause we don't put the chocolate syrup in his chocolate milk, then pur the milk, put a GREEN straw in and stir with a spoon in that specific order. Or if he hears his Dad say that he has put clothes out for the morning and in my forgetfulness reach for a pair of socks in the drawer the next morning that is not in the pile his Dad put out the night before. Or how when we get a taxi if he says he wants a van taxi and a car pulls up. And new quirks develop every day, every hour and it is difficult to respond to each new thing. But hopefully this 'diagnosis' will better equip us to understand and respond now.
In all honesty ... as said 'the apple doesn't fall far from the tree' .... as I read I strongly suspect that I too have aspects of the conditions and strongly suspect my oldest son does as well. The problem is, his Dad and I have little to no communication . Not my choice as you can tell I am a talker. His Dad refuses to discuss anything about his development with me even though we have joint custody and he has primary residence. So my oldest son had ADHD and a mild Oppositional. I am now very suspicious that he too may have Aspergers but his Dad refuses to discuss it. Would I be overstepping boundaries by calling his school and suggesting it to his teacher before he fails this year? I don't know.
It really is like swallowing an elephant over here.
Thank gawd for finding this place though.
Subaru's Mom
ps. thanks for tips on water bottles at night ... it works! |
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