|Feb 26, 2008, 9:05am||#31|
The routine part can be difficult - and noise seems to be everywhere these days. I can understand how you were when at a support group - I couldn't go. I know my situation isn't that dire - certainly in respect to what some of the girls here are saying. I think with groups you do relate to others and see how they are feeling and sometimes depending on how emotionally drained you may be - it can just lead to a breakdown into tears. I know thats how I would be. Also - re talking to relatives - I think again its difficult as you can become emotional and sometimes you don't get quite the right response or the one you were hoping for - and also its often the case you burst into tears. Funnily enough I much prefer emailing! You can literally email or message or type and be a blithering wreck in floods of tears, but no-one is actually aware of it. That for me is wonderful -
Today my son is horrible - he is very moody - and his Music Exam - performance - is on Thursday and its all down to that. Last night he was talking about something and he has been having guitar lessons for almost 2 years - great guy - and he said that - and then said 'and I'm still crap'! He isn't crap he is really very good - his tutor says so - has no problems with him. He now has it in his head that he isn't any good - and I'm petrified this will affect him on Thursday.
He played rugby yesterday - and had great fun - he is pretty decent at rugby but the last school he was at - didn't play. So he has played a few times - last night he came home - I'm not sure if he could have been any dirtier - there was mud everywhere - including his underwear etc., what a mess! Thats normal though - so you just take the clothes and wash them..........I'm still trying to clean the mud out of the inner door of the washing machine!!
He has the dentist tomorrow - which will be a real trauma - he won't want to go - but he has to - so there will be mayhem tomorrow morning. Still - I'm expecting it - so it won't be a surprise!
Hope your day goes well - its mid afternoon here now...............
|Feb 26, 2008, 9:09am||#32|
Now for me - and no offence to Italy - I'd rather be in Holland I've been to Italy once and innumerable times to Holland - and it wins for me 'hands down' - and so for me the analagy of this story is wonderful -
|Feb 26, 2008, 9:19am||#33|
My ds2 possibly has celiac disease (tbd). So I hear over and over from a friend: "I know a friend who ran a gluten-free cafe. It's defunct now." uhm. How is this going to help me?
|Feb 26, 2008, 9:25am||#34|
skin army girl
Joined: Oct 2006
Location: Glasgow, Scotland
Reading this thread has really moved me, I know you have all said you do what you have to but it doesn't make you any less incredible. I really admire all of you great Mums!
I don't have any kids (yet), but Autism is very common in my family. My Grandma is one of 7 kids, and each of them is somewhere on the spectrum - my Grandma being the least affected. All 7 have kids, 6 have grandkids, and my parents are the only couple in my family to have 3 "normal" children. By this I mean none of us are Autistic - but I've never been "normal", suffered from depression from a young age etc. Anyway, that's another topic for another day.
I know it's likely that I'll have a child somewhere on the spectrum. It's something that I've learnt to deal with because I've always known it, and all I want to do is have kids. The way I see it is children are a blessing, no matter what. I'm glad others take my view, because I'm sure I have no idea just how difficult it can be.
|Feb 26, 2008, 9:26am||#35|
I shall be back to respond to your post later on (which could be your morning by then!)
DS2 was given a dose of valium an hour before the dentist and nitrous oxide while in the chair... he was in an exceptional giggly mood and remained perky the entire day. I believe it was the nitrous oxide that had the better effect on him! Just a thought out there for you!
Hugs to YOU, hugs to ALL !!
|Feb 26, 2008, 9:29am||#36|
Joined: Mar 2006
Location: Long Island, NY
My 16 year old son is on the spectrum as well - diagnosed as PDD-NOS. Although he has had issues and has attended special classes/schools since he was young, he was only "diagnosed" a few years ago once there was a focus on autism. Finally the problems had a name! I've joined lots of support groups, for both myself and my son where he has been able to make friends with other children with special needs. I've found that learning as much about ASD (lots and lots of information out there) as I can has been very helpful in advocating for my son and the services that he's entitled to.
Although he's "different" than other children, he's still mine and amazing in so many ways - just differently. Although I know its long, the following was written by a woman who led one of the parents groups that I attend. I think its worth reading.
Tomorrow will be one year since we received our son's diagnosis of
Autism. I have been pretty reflective the past few weeks leading up
to this day. Maybe my thoughts will help some of you. Maybe it will
help me to share this with you since after all, this is still a
process even though it has been one year.
So it was Halloween day, one year ago. My husband and I sat in the
office of the Doctor at The Cody Center at Stonybrook as she handed
down a verdict to us which felt like a life sentence. Even though in
my heart I knew, somehow hearing it out loud made it real.
I returned home to my mother's house that afternoon and attempted to
take my children Trick or Treating. My son was dressed as a dinosaur
but we had to cut the feet and hands off the costume due to sensory
issues and he refused to wear the hood. He had no idea what he was
dressed for and even less understanding as to why we were dragging
him from house to house. He wanted to sit in the middle of the
street and play with a tree branch that had some pretty orange
leaves. He didn't get the whole concept of ringing the bell for
candy and so we returned home shortly after beginning. My daughter
was only 4 months old and dressed as a pea in the pod. Her whole
life up to that point had been a whirlwind of activity and her older
brother tantruming and crying. I spent the afternoon trying to hold
it together as the shock of what I had learned just hours before set
in. It still didn't seem real.
For weeks afterward I could barely motivate myself to rise from my
bed in the morning. My husband helped out tremendously with night
time feedings for our infant daughter. I cried almost all day long.
I cried for so many reasons. For myself and what I felt like I had
lost. We lost the dream of a normal life with our child. I cried
for my child, that he would have to suffer our cruel world unequipped
to handle his environment. I cried for my new baby who was clearly
not getting any of my attention and I cried for my husband who was
unable to sit at home and be depressed because he had to go to work
to provide for us. I'm sure as he sat in his office listening to
lawyers bicker around him he must have at times wanted to punch the
wall, but he had to hold it in and go on.
I was paranoid, argumentative, despondent. I tried to spend as
little time dealing with my son as possible. When he returned home
from school I was only too happy to hand him over to his therapists.
I felt unable to help him. I could barely get myself showered on a
daily basis no less try to teach him all of the things he needs to
My total depression turned to the next phase in December. I started
taking prescription medication for the first time in my life because
I could not cope with my daily struggle and my own grief. Soon the
paranoia and sadness turned to the next phase. Knowledge acquisition
mode. I spent hours on the computer and on the phone trying to learn
all I could about Autism. Trying to meet people and network and hear
other people's stories. I felt for a little while like I was cured
and that I was getting through this. It felt better than where I was
before. Julian's progress at school was very slow and even slower at
home. I started looking into what would become of him once he hit
school age. By February we had put our house up for sale. The
stress had only just begun.
After a stressful summer and two moves (yes two. We had to take up
temporary housing with my parents for several weeks over the summer
until our new house was ready for us to move into.) We are finally
settling in. Julian's entire life changed. New school, new house,
new therapists, new medication. Everything is different. He had a
very rough summer but it was all worth it. I realize now that I am
not done grieving. I'm still in the process. I'm in the anger phase
now. I'm angry that more wasn't done when he was a baby, that I
didn't know more earlier etc. Angry at things I can't control. I
kind of laugh now because I'm sure that another phase is somewhere on
the horizon and I'll be ready for it when it gets here.
There is one thing I learned this year. Julian is still the same boy
he was 366 days ago and he is still the same boy he will be in 365
more days. He is mine and he is perfect to me. I will admit, that
people's well meaning comments can be annoying at times. Like "Think
of how much worse it could be" or "He has the ability to do very well
someday." these well meaning comments are cold comfort at 4 am when
your kid is screaming his head off and you don't know why. I'm sure
it could be worse, but at that moment it's pretty bad and I'm not
thinking about how much worse it could be. I know he could do very
well someday, but I can't help feeling somtimes like I'm being gypped
out of right now. I know that sounds terrible, but I get angry and I
think that just makes me human. I get angry when people who have
typical children say things like "Well, you should feel lucky that
yours doesn't talk back". Yes. I promise you people say this to
me. I would give anything to have him talk back to me. He talks
back in his own way. He whines or he grunts. Talking back would be
preferable. I get angry when people don't celebrate all of the
beautiful things their kids can do. I am trying to be less angry
about that and be happier when my child does something that I
consider to be amazing and I try to celebrate that.
One year later it still hurts. There is not a day that goes by that
it doesn't at some point occur to me that I have a son with Autism.
As the afternoon goes on though, I realize that there are thousands
of other good moms out there like me who are feeling exactly what I
feel every day. I also realize that I am so lucky to have my
beautiful children. I was given a wonderful gift by being chosen to
be the mother of a special child. It has made me see wonder in
things that I would have only have taken for granted before. It has
made me realize that life is too short to be hung up on things we
can't change and also too short to not change the things that we
One year later I'm doing alright. Not great, but alright and that's
a lot better than I thought I would be one year ago yesterday.
|Feb 26, 2008, 9:43am||#37|
I hope that now you are feeling a little better in yourself. Its not easy - but you are right - finding out as much as possible about the diagnosis etc., etc., is how to do it - and that way you are equipped to be able to know what you can expect service wise for your son.
In the UK - we honestly have so much less in the way of help - nothing is ever offered - and if you question - OMG - you become a troublesome parent. Well, thats me - the troublesome parent.
I hope that by your posting here that it may help you - as by sharing with others who have not necessarily the exact same problems - but problems which in some way are related you can see you aren't alone. Talking is great - I truly believe that - and as I said previously - I think it is sometimes easier to talk with people you don't really know - no-one is here to judge - we all know where 'your coming from'.
I hope you continue to share - and I'm sending big hugs from windswept Scotland
|Feb 26, 2008, 9:44am||#38|
You know I think I'll try the nitrous oxide for myself!! Might give me the little 'lift' I need to tackle the ironing!
|Feb 26, 2008, 9:49am||#39|
bona fide bag lady
Joined: Nov 2007
Location: sunny island set in the sea
|Feb 26, 2008, 4:36pm||#40|
Joined: Jan 2006
The nurse came over to our house - she was so sweet and gave me a copy of this. She said it was because we were moving to Holland. Lol, I was very confused.
I always wondered what the Dutch thought of this.
Last edited Feb 26, 2008 at 4:43pm.
|Feb 26, 2008, 8:47pm||#42|
Joined: Sep 2006
You ladies are the bravest, most selfless people in the world. It isn't even necessarily because you want to be, but because you have to be and you rise to the occasion.
I only have the slightest idea what you are going through. My second son abruptly stopped all babbling as a baby and didn't speak at all for the longest time. Nor did he pull up, nor did he walk. When he finally began to talk, it was speech entirely free of consonants. He spoke in vowel sounds only. He eventually began to walk, but fell often.
We took him to specialists and neurologists early on, but no one wanted to diagnose a problem that early. I was always told he was "late-normal", but I knew that wasn't true. I got him speech therapy and physical therapy at age 2 and he started a special school program with an emphasis on speech and gross motor development at age 3.
We are very lucky that at age 5 he is functioning normally, although he still receives speech therapy and PT. We also take him to vision therapy because he does not cross center line in writing (he makes a t by making a separate line on either side of the vertical post) and he cannot follow the line from a pointed finger. I can point to a book, alone in the middle of the floor, and he cannot find it. But if I describe where it is in relation to the furniture, he finds it immediately. He is intelligible, which allows him to be in a standard classroom.
No one is willing to diagnose him PDD because he is social and he is affectionate, but he is social superficially; he prefers to be alone. Whenever I go to school to drop something off or help out, I see him at recess playing all alone with a big smile on his face. He is a VERY happy child, but there is no escaping he is unusual.
So it is a kind of blessing that he was never diagnosed because he cannot be labeled. Academically he is above grade level, and socially he gets by, but I can't help but believe that the spectrum of autism/Asperger's/PDD is much greater than anyone imagines. With the exception of the social aspect, my son displayed or still displays every single symptom of Asperger's. But in his case the label doesn't affect outcome, so I guess it is irrelevant.
I just wanted to share my story, even though we don't face the same challenges as other families. It permanently changes a parent's perspective on life to have a special needs child and I spent years chasing from doctor to doctor looking for help and for answers and wondering what my son's future would hold. Right now, I still don't know, but seeing his smile I at least know he's happy.
|Feb 27, 2008, 1:41pm||#43|
Thanks for sharing, HauteMama.
I can relate to the playground at recess! I know what you mean when you say your ds is happy when he's by himself. While all the kids are chasing each other, my kid is running from no one but rather he runs a large perimeter around them all with a huge grin. He’s really enjoying himself!
I hope that your ds has educators looking out for him and understanding him. I've seen sometimes mainstream schools aren’t equipped or trained to understand and cannot differentiate "eccentricity" from bad behavior. It can be hard for the kids with high functioning abilities and for the parents who are not sure how they can advocate for their child.
As your ds is high functioning, he will learn all the coping skills as he grows. Have you read Temple Grandin and Donna Williams’ bios? Both women have high functioning autism. I remember reading how their understanding of the social skills clicked for them at one point in their lives. Much of it was conditioned or learned responses but they understood how to go about it as they grew older.
As for the vision, I notice my ds exhibits unusual processing too. He will zoom in on things but sometimes he appears to not see or be threatened when I point to an object. Huge problem with him following my finger on a book page, so teaching from books is a major challenge but we find other ways (video, singing, interactive toys) to combat the high resistance.
I agree, the whole spectrum is so incredibly broad, I honestly don’t think there are any two children who share the same traits.
|Feb 27, 2008, 2:09pm||#44|
I've been meaning to respond. Ever since my first post here, I've been feeling a bit more directed, less sulky. Ironic (is this correct term). Noticed that the Holland story posted was of a symbolic journey. That the autism journey I was facing in my (our) life seems to have transformed into a desire within me for travel in reality. Interesting, if indirect, correlation...
|Feb 27, 2008, 11:02pm||#45|
Lescoy, it's my bedtime soon.
How did your ds fair at the dentist? Did you take nitrous oxide yourself? j/k! I'm sure he'll ace his tests today!
So much for vacuuming, struggled with it for a while and then realized much later there was a permanent marker pen jammed in the hose and a major dustball clog. Argh! I can't believe I was pushing dirt around w/o suction. So my floor may be reaching my ceiling quicker than yours...