Just got my kids diagnosis :-(

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I just came home from the Dr where my daughter was diagnosed with PDD-NOS. Basicly described to me as a bit less then Asperger's. The husband and I are reeling, just heartbroken. She's only 7 we so hoped for something we could throw some ritalin at, and it would go away. Reading the line, "<i>may</i> be able to live on their own, or hold a job". Just sucked the life out of me.

Any suggestions? What should I read, what should I do?

I wouldn't panic over this very initial and vague diagnosis. This sounds like something she may well likely progress right out of in the next few years. At this point, just be sure she has all the academic support and accommodations necessary to ensure she doesn't fall behind in her learning, and be sure to get her involved in one or two low-pressure peer-related activities to get her interacting with other kids more. Keep an eye out for emotional problems related to her (current) delays in social interaction, and make sure she gets counseling (by a proven PDD expert), if you see that she's struggling emotionally or feeling "different." Age 7 was when I realized how different I was from other children, and it was an extremely stressful year for me. However, I have classic Aspergers and my problems at age 7 were no doubt much more extreme than hers. I would say just don't panic at all at this point! I was just diagnosed last year at age 40, I've been happily married for 22 years, and I managed to finish college and hold down a well-paying job in insurance for almost 20 years. I guess doctors always try to prepare parents for a worst-case scenario, but I certainly wouldn't take it too seriously at this early stage. And please don't let her take it too seriously, either! Good luck to all of you.

if you ask me it's probably better she don't know she has a condition....

for me I am only discovering it now...even doctors miss-diagnosed me in a mental institution (well sort of - I think they thought it prudent not to tell me)

PDD can be --pervasive , but on the whole the strength of each trait/lack of ability slowly pans out. I highly doubt that it would be a problem in adult hood - ie finding a jobb.... if you tell her she has a problem then her automatic assumption is that she doesn't have to find a job. but by bo knowing and just trying harder next time she will get the job she is after.

-Living on her own - of course she can live on her own.... unless depression at all sets in because of social failure, in which case it can get worse than just not being able to take care of yourself (harming urself etc) ... I think not cocooning her is the best bet.. she will have to be prepared for failure so it's better to fail young and be taken care of then to have to cope as an adult with things you have never had to cope with.

Yeah, she's already have a very difficult time, in school, her wild emotions have set her far away from her peers, and her screaming tantrums have brought our house to a standstill. I'm trying to get her help, I just didn't think the mountian would be so big.

I agree with not burdening her with the details, I don't want to set her own expectations to low. We've also already agreed to not tell our friends and family the specifics, we don't want her to be the 'broken one'.

I totally agree! There's no need for her to know anything now! She's not going to understand what the heck PPD is, and it will just make her more upset. Don't ever give her any reason not to push herself to the maximum in achieving independence, an education, etc. If she thinks you (or her doctors) have given up on her, then she'll give up on herself. But I do wonder whether Ritalin might help with her tantrums and meltdowns at school. School was the absolute worst for me, because my senses were so overloaded and I was constantly lashing out physically and verbally at other kids and teachers. I take Ritalin now and it really helps with my temper and sensory overload. I'm sure it would have really helped me tremendously as a child. I know stimulant meds are controversial, to say the least, and certainly they're not safe for everyone. But if you have her checked out psychologically and physically to make sure they're safe for her to take, I would give it a try! If they help her stay calmer and act more appropriately at school, she'll begin to feel more comfortable around the other kids (and vice/versa). That will certainly help keep her from getting depressed.

Hi!

My husband and I were in your shoes in Nov 2005. Our son was 12 yrs 11 mos when he was diagnosed with Asperger's Syndrome (but he was also diagnosed with Bi-Polar, OCD, GAD, depression, possible mental retardation, CAPD, Executive Dysfunction, etc.). And we've been told by several of his doctors that he may have to live with us "forever".

Asperger's was suggested to us by the middle school psychologist and I cried when I looked it up online, on one hand because we were devastated but on the other hand because we FINALLY had an idea of what he had been dealing with for SO LONG, and we finally had a direction if you will.

Think back over your daughter's life and do you remember ever thinking "something's different/strange/off/(insert word)" or has anyone in the past (teachers, neighbors, grandparents, etc.) ever commented on her as being "different/strange/off/(insert word)"?

Some examples...

His preschool/daycare teacher commenting about how you couldn't say to Cameron "If I see you doing that then ..." because he took it to mean Okay as long as she doesn't see me doing it then it's okay. ASD (Autism Spectrum Disorder) kids are VERY literal and he has always been VERY literal, still is to this day.

And, his kindergarten teacher commenting about how terribly behaved he was at school directly after winter break and what were we doing at home to him to give him such a rotten winter break. In hindsight, it was transition from 3 weeks off school to going back to school. It's very well documented that transition is difficult for ASD kids and it's still a huge issue for him (we moved from California to Washington in December and he was psychiatrically hospitalized in January, overwhelmed from the move/transition).

And, his 2nd grade teacher referring to him as a "penguin" because he always wore shorts, even in the coldest of cold (even when it snowed) and threatening to send him to the office if he didn't wear pants. He was in 6th grade when diagnosed and I actually came across a website that used the exact word "penguin"! ASD kids can be insensitive to cold.

And, that he would so seriously misbehave when in certain situations. Turned out it was during unstructured activities that he would get in trouble (still does), another thing that is well documented.

And, his 5th grade teacher whose very first words to us when we met him were "He marches to the beat of his own drummer". Again, I came across a website that used this exact phrase when researching during his diagnosis.

And his inability to cope in P.E. in 6th grade, always getting beat up and bloodied (to the point that we involved the police), and his inability to deal with changing from class to class, and his inability to handle homework from several different classes. Unstructured activities (P.E. and passing periods) and transition (from 1st period to 2nd period to 3rd period etc.)

And, his severe reaction to strong smells, loud sounds, bright lights, etc.

The point being... Your daughter didn't just develop this overnight, it's been with her for some time. At least now you know WHAT she's dealing with so that you can finally get the appropriate help for her. I wish we had found out at 7 instead of 13. It could have made all the difference in the world...

When our son was 13-17 months old (Jan into May) he was deathly ill and the doctors kept treating him for various maladies because they couldn't figure out what was wrong. He was literally dying in our arms.

The doctor consulted with other doctors and finally they figured out that he had Kawasaki Disease (still a mystery disease to this day). We were devastated until we realized WAIT, now that we know what's wrong we can treat it, which we did (he was hospitalized to receive immuno-globulin over night and he was his old self the next morning, after 5 months of extreme, extreme illness).

Having a name put to your daughter's troubles is a good thing in my book because now you have a direction. Try to be happy now that you know because now you can help.

And hang in there. Our 15 year old daughter is PDD-NOS but is doing wonderfully, and she was never diagnosed. We just figured it out in our research about our son.

Just read, read, read everything you can about it and pull from what you read that which you can use.

It's a long post but I hope it helps...

Diane Dennis
http://www.aspergers-and-pdd.com

Diane, yes, you are right I know, I've know from day one. But I can't help feeling this horrible clang of a door closing. I've hoped all along that it would just be something fixable. We could go, take this pill and tada, here's your beautiful little girl back.

I know there's help, I know that life is hard, you deal with stuff and make it work. But I want my baby back, and this just hurts so much.

Wrenny... I understand your grief, and have been dealing with similar feelings since my son's diagnosis in November. What consoles me, though, is that the diagnosis explains so much, and is finally giving us some tools to form a better relationship with him, and parent him more effectively. Before going down the diagnosis path, we knew there was something different about him, and we were pretty sure it was asperger's, but we just didn't know what to do with him. We tried everything we could think of, but many typical parenting techniques just didn't work. Although the diagnosis has meant having to come to terms with a different future than we imagined for our son, it has been a blessing in that we finally understand what is going on for him, and we've been able to access a lot of resources that are helping us to become better parents. Hopefully that will result in a different future for him!

In any case, getting a diagnosis of any ASD results in a grieving process for many parents. The future you hoped for suddenly looks much different than you expected. Coming to terms with a lifetime of "work" with the child can be daunting. For me, my grief is often triggered when I spend time with other children in my son's age group...I see them becoming more independent, social, etc. and I notice just what isn't happening for my son. But, I try to focus on the positive...on the many gifts that he has, on the progress he is making, and on the power that comes knowledge about his condition. One other thing that I found really tough about the diagnosis stage is that it was preceded by almost a year of assessment...so we spent a year learning all about our son's deficits, without being given many tools for working with them! Aargh! Talk about frustrating. Once you have the diagnosis, however (and thank goodness), you get to move onto the stage that is much more empowering...getting some therapy, working towards solutions to manage daily challenges, developing a long-term plan to benefit your child's development, and getting some supports in place for your family! I hope you're able to find a good support system...people who share your experience and can understand what you're living, and people who can give you a much needed break!

Hang in there!

a dx does not mean the end of the world...i remember feeling overwhelmed at first..sure it's devastating to think that your kid will not reach the goals you had set for him.
that doesn't mean that he'll never become successful, or be able to live by himself....my hubby had lots of issues as a kid~wasn't dx-ed as aspie until he was 35. he has his own business, and is a great dad to our 3 kids ( 1 of which has aspergers, and another who is currently dx-ed as ADHD)
once you've digested the dx, and all that it could be for your daughter, i hope you can look around at all the people out there who are successful adults with this disorder.

Wrenny, this isw not he end of the world it as the beginning. [see pm]

Wrenny... I missed the part of your post that asked what to read... a couple of books that I have found very helpful are:

"The Out of Sync Child" (http://www.out-of-sync-child.com/)
"The Explosive Child" (http://www.explosivechild.com/)
"Autism & Aspergers: Understanding the Relationship Puzzle" (http://www.rdiconnect.com/resources/vie ... .asp?pid=6)
"The Complete Guide to Asperger's Syndrome" (http://www.amazon.com/Complete-Guide-As ... 1843104954)
"Engaging Autism: Using the Floortime Approach to Help Children Relate, Communicate, and Think" (http://www.floortime.org/)

Let me know if you have specific questions about any of these resource

I wouldn't panic. Well...heck, I would at first But Aspergers isn't as much of a life sentence as you may think. They always put a grim view on it, but frankly...brought up well and loved, that little girl will grow to become a beautiful, well-rounded adult Aspergers is at the highest-functioning end of the spectrum, after all.

I'm NT myself but I have several Aspies I'm close to irl...three of the main ones being one of my best friends, one of my colleagues, and my boyfriend. All three of them have a good full-time job, two of them now live alone and are doing fine. They are blatantly Aspies but by the time they've grown up, at least the ones I know have sort of...grown into their AS. It's just part of their personalities, and yes they have their quirks but they're perfectly functional, but above all, lovely people to know.

It's a mission, yes. You have to know they think and feel differently from us - often a lot more strongly and vividly. I've noticed that aside from the social world, my Aspie friends irl see and feel the world in much brighter colours than I do. You have to know what's going to be painful for them that's perfectly fine for us...and just try to avoid the situation My mate Sharon doesn't really like being touched...so I don't. At first, my boyfriend was HORRENDOUSLY ticklish, but somehow he's desensitised himself to the point that tickling him is no fun any more, he just tickles me back!

The Aspies I know are very bright people, and easily find their niche in society. Perhaps they're lucky, I don't know...but the future can be bright and shiny. This lovely little girl of yours...nurtured and understood, I would put my life savings on her growing up and living independantly, finding love...you name it.

What I'm trying to say, I suppose, is...don't view this as a closed door into a dungeon. View it as a fork in the road, and you've been told which road is the one she will take. It's a different route from the mainstream, but with a little help it will be no less enjoyable or successful. My guy is only 17 but now lives alone (under some hilariously unexpected circumstances, but he doesn't seem to mind), has a full time job, a full school education behind him, his own car, and yep...a girlfriend My friend is studying at uni and working at the same time, also creates custom jewellery in her spare time that creates a LOT of business. She's a textbook case down to the unusual style of walking and unusual eye contact, but she's spread her wings and is flying high. My colleague is an interesting guy... just scored a senior position here and is mixing in well. He's got a family, a good job, seems pretty happy to me (if a little lost at times, LOL).

Your little darling has a perfectly functioning body, a good head on her shoulders, and a fantastic mother Now that you have a NAME for what makes her unusual, the future should be much easier to march toward You know what to expect, and the awesome people here at WP have no end of good advice on how to make things work.

Just wanted to say just because your daughter has a diagnosis (label) doesn't mean that it's changed that little girl you love dearly. That label will just help in getting support and all for your daughter and your family to help her meet the challenges she has. What she needs is for your acceptance of who she is overall with and without label (dx), she needs your love and for you to learn to try to understand how she sees the world and all. You need to get down to her level and not try to rush her to a level that she can't handle and to not expect her to leave her own world behind, because she can't do that. We perceive the world differently and that's just part of who we are. At times it can be very stressful and we act out and all because we don't always know how to respond the most appropriate way but with help and support from family, we can learn to better handle things. I am a mother with Aspergers, I was diagnosed after my son was diagnosed with Moderate Autism. A label (dx) can sound near devastating unless you learn more about it, look for the positives, your daughter likely has many that she may not have had otherwise. The other behaviors are possibly anxiety and such that she may not have the words for. What she needs is a calm reaction to be able to see an appropriate reaction and letting her calm down and then to approach her and discuss things.

The easiest read, while still being quite informative that we've found is "A Parent's Guide To Asperger Syndrome & High Functioning Autism" by Ozonoff, Dawson, & McPortland. That would be my suggestion as a good first book to read - gets you up to speed, giving real world examples instead getting you bogged down in the medical stuff right away. As for your diagnosis, what that means is that your child did not meet the requirements in DSM-IV for Asperger's, but was in the neighborhood.

The heirarchy goes PDD-NOS (pervasive developmental disorder - not otherwise specified), Asperger's, High Functioning Autism, and they are closely related, but seperated by a few key factors, perhaps the largest of which is whether their speech developed normally until about age two or not - the main separating factor between HFA and AS. As I'm sure your doctor has made you aware, this is NOT something that you can just throw drugs at and it will stablize, that is unless there are related personality disorders (ADD, Bipolar, etc.). PDD's (of which HFA, AS, and PDD-NOS all are) are not mental illnesses, although they effect the brain - in general they are regarded as more neurological based, although a psychologist sometimes may be part of the team helping your daughter play to her strengths.

For treatment right now, and we are really only a month or two in, after the intital diagnosis by a neurologist, our daughter is now in speech classes, and trying out a dietary change that seems to help SOME people with PDD's, which involves basically removing Dairy (specifically Casien) & Wheat (specifically Gluten) from the diet - do consult a doctor to supervise this, as vitamins will need to be suplemented, either through Orange Juice with Vitamin D & Calcium added, or otherwise. This does seem to have an effect of increasing her awareness of surrounding factors, although it is certainly not a cure, nor the cause of, PDD's. There are things like applied behavioral analysis, which seem to train kids to have the "right" responses, not exactly something my wife and I are interested in for our daughter, but it works for some. Again, psychologists sometimes are parts of a team (it will probably require a variety of approaches) to help. AS for psychiatrists, there is much debate as to whether medicines are the right approach for this at all, but some folks do swear by it, although my wife and I, after learning the facts as much as we could, have ruled it out at least until our daughter could actively participate in the decision.

As for the frustration of the past years, and the grief/loss issues you're experiencing now, we've all been there. My wife and I have decided to start seeing a couselour together so that we might be better equiped to meet our daughter's needs, as it's really US that needs to change, and not our daughter. That is a liberating feeling, to know that the burden of change here is not on our daughter, but really my wife and I - we can handle that much more, and that simple knowledge has taken out the sting out of our daughter's meltdowns. Understanding that they come from a place of sensory overload and NOT obstinence gives me way more patience than I ever had before.

I see the dignousis as a door opening and not one closing, aspergers is a wonderful thing if it is dealt with sufficiently. Check out the gfcf diet and more if the behavior is bad if not then just don't do anything. Make sure she gets social skills and indipendence training and FULL support in school to give her the best possible chance of success