Hi there...sorry for the novel inside!

iVillage Member
Registered: 03-25-2003
Hi there...sorry for the novel inside!
8
Sun, 09-14-2003 - 8:09pm
I've been lurking for about a week now, and I thought I should say 'hello' (my mother always told me it wasn't polite to lurk in doorways!)

Until a week ago, I barely knew what PDD-NOS was. I was happily living my life as a librarian, wife and mother to a beautiful 2 1/2-year-old boy, Ben. My in-laws came over for a visit...said there was something they wanted to talk to us about. They don't come over very often so we were dying to know what they had to say. When they arrived DH and his dad headed out to the patio to talk. They were out there about an hour and then they came in. We all made some small talk and my in-laws left. Once DH & I were alone (my niece was here for the weekend so he waited for her to go watch t.v.) he told me what they talked about: my in-laws have suspected for the last year and a half that something isn't quite 'right' with Ben, and they think the problem is PDD. My first thought was that they were insane. I was angry with them for thinking that my child didn't measure up. Sure he has hit most of his milestones a little later than other kids his age, but he hit them all eventually. Does he rush right over to give them hugs and kisses when they arrive? No, but they hardly ever see him.

I immediately headed to the internet and started reading...some symptoms sounded familiar (repetitive speech, lack of interest interest in playing 'with' other children, but will play next to them, difficulty making eye contact, dislike for new, stiff clothes, reluctance with physical affection) but other things just didn't sound like my kid. And the things that did sound familiar don't happen consistently: Ben will look people in the eye, but he doesn't always want to; he will play with other kids, and gets excited when he has a friend coming over, but doesn't always play 'with' them; he repeats the lines from 'Toy Story' over and over (and OVER!) but then he'll say something completely original and contextual and relevant. I know now that autism is a spectrum and I realize that some of DS's behaviours could place him on that spectrum somewhere. Like many of you, I'm sure, I wish there were a simple blood test that can tell me 'yes, he has it' or 'no, he doesn't'. I also feel incredibly guilty that someone else saw this and I didn't. To me he seemed (still does, in fact) like a perfectly normal, happy little boy. Can there possibly be something wrong that I just can't see? I'm trying not to be in denial, but I'm also trying not to label him too quickly and diagnose him based on what I've read....I'm probably of at least average intelligence, but I'm certainly no psychiatrist.

So tomorrow we start the process of getting him evaluated. He has an appointment with his general practitioner, and we're looking to have him referred to a pediatrician we've heard has a lot of experience with this (that's the way it works in my province - there are so few peds to go around that you need a referral). At this point there are moments were I feel like when the doc asks me tomorrow why I'm there I'll say 'I don't know'. But I know I owe it to Ben to explore the possibility that there's something there, especially if it's something that has troubled his grandparents for well over a year.

Thanks so much for listening. Any insight that you wise ladies can offer would be appreciated.

Cheers,

Lynne

Avatar for mamabearof2
iVillage Member
Registered: 08-30-2003
Sun, 09-14-2003 - 8:53pm
Welcome Lynne, I always thought my DS was a normal boy who reached his milestones later also. He would play next to kids more than with kids. He was our only child for 4 years and I was not around many children to evaulate how different he was socially compared to the others. I believe it would have been much better to have had our DS diagnosed earlier.

I am curious as to what made your in-laws feel it is PDD.

Keep us posted on Ben.


Linda

Linda5Fburgerbear.jpg image by suzyqe1            &nb

iVillage Member
Registered: 03-26-2003
Sun, 09-14-2003 - 10:44pm
WOW! What a wonderful and open minded mother you are! Most people would be upset if their in-laws said something about their child. I had my cousin who is a childcare worker and who works with "special" children tell me that she thought that my son seemed to have some problems too. But in my situation I knew and suspected for a long time there was something "different" about my son. It is now two years later and I am finally coming to accept the fact that he probably has Aspergers. His pediatrician is pretty sure he has it but she wants him to see a pscycatrist to get a definate diagnosis. My son is 4yrs old and has never interacted with children very well. I have taken care of two other children for 3yrs now and he has just started to really play with them within the last 3 or 4 monts. He hates any kind of change. He doesn't like to wear certain types of clothing and I cherish every hug from him because they are few and far between. He just willingly hugged my mother yesterday and she held on to him extra tight because she knows it will probably be a while before she gets another one. Anyway, enough about me! Even if your in-laws are wrong about him, just remember they have his best interest at heart. I have the opposite problem. My in-laws think that my husband and I are crazy and just don't know how to discipline him probably. Please keep us informed:-).

Sincerely,

Susan

There are 4 things you cannot recover.
1. The Stone.......after the throw.
2. The Word........after it's said.
3. The Occasion......after it's loss.
4. The Time.........after it's gone.
Avatar for littleroses
iVillage Member
Registered: 03-28-2003
Mon, 09-15-2003 - 1:03pm
First of all, I think you came to the right place. Secondly, I think you should be proud of yourself for being open-minded to what your in-laws suggested. That takes a lot of courage to step outside what is comfortable for you. I think your in-laws are very brave to have the courage to say something, knowing there's a possibility they could alienate you. Third, throw away any guilt you might feel. My daughter wasn't diagnosed until last April and she's 5. Talk about denial!!! (Also a dose of ignorance on my part).

Most of all, you have a lot of hope. The biggest factor to these kids leading normal adult lives is EARLY INTERVENTION. There are other therapies, theories and so on out there that might aid in recovery, but consistently I have read that the earlier they receive help, the more likely they will overcome most of their hurdles. You did good, mom! I am kicking myself in the pants for waiting until she was 5 to listen to the little voice telling me something was off. I can't hang onto that either though, the guilt is absolutely useless. Spend your energy on something useful.

Another thing, whether it's PDD_NOS or autism or whatever, realize that there are positive things to these kids. They aren't 'all deficit and no joy'. I have read that many of them would not change that part of themselves. There must be something good about it. So, it's our job to help them adapt in the world like we would any regular kid, without trying to change who they are.

Learn everything you can. Learn how to explain it to people. My biggest source of understanding came from reading things from autistic people themselves. Quarterback Dan Marino's son has autism and he's 14 years old now and considered "recovered". Here is what he says about it:

"The only thing I really remember about having autism was wanting to say something and not being able to do it," he said. "It's pretty weird to explain. It's like you are a perfectly normal person on the inside, you know what you want to do, but you just can't do it. You know you want to say something, pick up something or do something, but you are just not able to do it."

for the whole article, go here: http://www.bridges4kids.org/articles/12-02/Sportsline11-30-02.html

Gee, I have so much more to say, but I'll try to control myself! Last thing is to realize that PDD-NOS, aspergers, autism....they all fall into a spectrum, as you'll quickly learn from reading. Everyone is so unique that they don't have to have every single behavior. My daughter, for example is very friendly, caring, and loving. I have learned how that she is also a very brilliant for adapting the way she has. I always thought she had language until I realized that she had memorized many phrases and learn to fit them into conversation. When the conversation was out of the ordinary, the phrases did not fit. I also realized that she had trouble making eye contact. It's not like she can never look people in the eyes, but it exists. I haven't figured out why she can at times and not other times. Her master chameleon-like abilities had fooled teachers, her pediatrician, and her pediatric neurologist (that she has gone to for a few years for a seizure disorder.)

No matter what the diagnosis, if any, keep those things in mind. It's not something parents want to hear. I still have trouble dealing with it some days. On the other hand, you learn that it's a matter of perception. They truly have a different perception than many other people, not less, but different.

Go to the school district and see if your child qualifies for their Early Intervention program. I don't know the age at which they become available, but I think it's generally around ages 2-3 where they will begin evaluating and helping children. With the school district, all evaluations and assistance are free regardless of income.

And you possibly might want to thank your in-laws for caring enough to say something. Right or wrong, they cared and were trying their best to approach it with your family. (so it sounds from your post). You have to admit it would be hard to tell someone your concerns like that.

Good luck!


Avatar for angeladee
iVillage Member
Registered: 03-25-2003
Mon, 09-15-2003 - 1:55pm
Hi Lynne,

I just wanted to say hi. I'm another lurker (I'm getting ready to post about my son, but read your post first!) but I wanted to mention that my son has many of the same behaviors as Ben. We're in the process of being evaluated (but running into some problems, as my post will show). But I wanted to say hi and let you know I"m going thru some of the same things you are.

Take care

-angela

iVillage Member
Registered: 03-26-2003
Mon, 09-15-2003 - 2:40pm
Hello,

I wanted to reply as someone who has been on both sides of this. First I have 2 kiddo's with ASD's. Recently my 2nd child (7 y.o.) was diagnosed with asperger's. We had suspected since he was under 3 that he had some difficulties but were in denial about anything related to autism. He just wasn't like our older dd who was diagnosed PDD at age 4. We just blew off anyone's comments about PDD which were very rare. I have recently discussed with a couple of Mike's preschool teachers on separate occasions his new diagnosis at which they tell me they suspected it all along. Well couldn't they have shared that info so we could have gotten started earlier! Actually many people who knew us thought that Mike was AS but never brought it up. Now they are the big "oh yeah, I thought so"

DH and I are not only parent's but professionals that work in the autism field and so every thought we would be up on it and didn't think we needed the information. Thing is when it is your own child it can be hard to see things objectively. We focussed on all the non-autistic type stuff and found excuses for all the autism type stuff. I kick myself often becuase he is struggling now and I so wish we could have gotten him started with help earlier.

Then from the other side of the fence, I am also the aunt of a child with autism. I was the unlucky soul that had to bring up the topic with his parents. I suspected it for a while as well and bringing it up was one of the hardest things I ever had to do. My BIL hated me for a very long time. It wasn't until a stranger also brought it up that they really believed it. He doesn't hate me anymore, I am not even sure tehy remember that I brought it up in the first place as it has been 4 years and he has been through many evals since them, but I sure do because it was a real hard decision to make. The only reason your in-laws were able to bring this up is because how much they love you and your son. I am sure it was just as hard a decision for them to tell you. I am sure they hope with all their heart that they are wrong, but I do think that you are doing the right thing by having him evaluated.

I really hope for the best for you and that the evaluations all turn out positive. I am glad your in-laws were able to do that for you and were brave enough to.

Renee

Photobucket
iVillage Member
Registered: 03-25-2003
Mon, 09-15-2003 - 7:26pm
Thank you all so much for the warm words of welcome! I can't tell you what it means to me to know that I'm not alone (but then again, if you're here you probably already know what that feels like!)

There may be some uncertainties in my life right now, like...oh I don't know - is my kid AUTISTIC?!, but there are a few things I know for sure:

Telling us their suspicions was the hardest thing my in-laws have ever done. My gut reaction was one of anger (they are big on comparing their children and grandchildren to each other, which makes us all crazy) but that didn't last long. I know I will be eternally grateful to them, even if I'm not ready to talk about it with them yet.

My son, whether he's on the spectrum or not, is the smartest, funniest, happiest, most charming little boy I know. Period.

Our families are very supportive, and I know that will be VERY important in the coming months/years.

There are other certainties in my life right now, but these are the big ones.

A special thank you to those of you who let me know that the 'bad mommy truck' isn't about to stop at my house because I didn't pick up on this myself. The thing about Ben's behaviours is that in and of themselves, they're not all that weird (to me at least...I mean, am I the only parent of a toddler who feels like she spends more time watching Toy Story than sleeping or is it just autistic kids who can't enough of Buzz Lightyear?)...it's just that when you put enough of those behaviours together in one kid, it's tough to ignore that it could mean something. Or it could mean nothing. Or maybe it's something. Ya know? :)

O.k., I'm really rambling now. I just wanted to thank you all for making me feel welcome. Like Angela said above, I feel like I've found a new home, at least for the time being. Ben saw his GP today and he's being referred to a pediatrician who has experience with autism. It could take awhile before we get an appointment, but I'll keep you all posted.

Thank you for being here!

Lynne



iVillage Member
Registered: 03-25-2003
Mon, 09-15-2003 - 7:40pm
Thanks for your message Linda!

We actually asked our IL's to write down for us the things that they saw that made them suspicious. Some of them we agreed with (avoiding or shrugging off physical contact, ignoring or withdrawing when he's addressed, avoiding eye contact) and others seemed like they were talking about someone else's kid (hand flapping when excited or stressed - DH hasn't ever witnessed this and I haven't either). Like I said in my thank you message below, many of his behaviours don't seem all that strange until you put enough of them together. My IL's listed things like 'will play for long periods with the garden hose running his fingers through the water', 'will watch certain movie repeatedly' and 'repetitive actions such as opening and closing the screen door'; is there a toddler on the planet who doesn't like to watch the same movie over and over? But we're exploring this because he exhibits enough of these behaviours that when you put them together it could mean something.

I'm pretty sure that they noticed odd behaviours and then went searching for a condition that fit. They might have started looking at autism right away because Ben used to like to spin the wheels on his wagon; as far as I know this is a 'typical' autistic behaviour, but it's not something he did for a long time, so I didn't think much of it. From my understanding they sort of found PDD-NOS along the way and from my limited research and understanding it seems to fit.

O.k., I've written another novel - sorry! Thanks again for your message...looking forward to getting to know you better!

Cheers,

Lynne

iVillage Member
Registered: 07-11-2003
Tue, 09-16-2003 - 3:09pm
I just wanted to say welcome to the board, Lynne. It must be confusing to be in your shoes about now. I didn't realize that my now 12yo dd was 'different' until well after my now 9yo dd was born. Jade, the 9yo, was born 9 weeks premature and had problems from the start, so with her it was obvious. But with Ayla it wasn't. She seemed normal enough to me, just a little late here and there and a little early in other areas (like reading).

It's hard to say if a child is having real problems or if he/she is just developing at their own pace. Only an eval can tell, and even then they can sometimes be wrong, especially when done at such an early age. But I must note there that they usually err on the side of normalacy(sp?), meaning most often they will conclude that there is nothing wrong when later later it becomes apperant that there is.

I have to say, I admire you for your openness to exploring this possibility with your ds, especially since the source of concern was your ILs. While I have a great relationship with my Ils most people don't. And I know that I have still taken past 'advice' from my MIL with a grain of salt just b/c I don't like being told what to do with my own children.

Anyhoo, welcome to the board. We look forward to getting to know you and your family better.

Peace,

Candes