Pdd

Hi P.,
Yes, be open with other parents. You will hopefully find out how compasionate and caring other parents can be and maybe helpful to you as well. Best of luck!!

I don't know how severe your son's situation is or his age, but take heart, you are not alone! What are the areas most affected by his PDD? Can he talk or is he non-verbal? Is it autism, aspergers, or another form of PDD? And how well versed are you with his condition? The more you know, the more you can help others understand.

We have some friends whose 12-year-old son is autistic. He has no verbal skills at all, but continues to join the family in most activities and goes to school at the local public school. At church, he joins the kids up front for the children's message and remains with the parents when the kids go to Sunday School. He loves the music and enjoys his own world with the rest of us.

I say all this because we all just take him for who he is and still love him for that. It helps to know he is autistic, severely so, in fact. For us, knowing his diagnosis helps us all explore ways of handling things together and learning more about it.

When he was little, it helped if there were pairs of things. Don't ask me why, but if he was holding two of the same thing, it calmed him. Now, at 12, he understands simple instructions but is still most definitely in his own little world.

He smiles in delight when something crosses his mind, or cries or shrieks when other things pass his mind. They may happen during a time where people are expected to be quiet. But he experiences things differently than the rest of us and that's okay.

I'm actually thankful that our son is around him at school and at church so that our son learns that people come in all sorts of packages.

I sometimes feel like an outsider myself when we're dealing with some things with our own son. Sharing your struggles with others is sometimes the biggest battle to overcome. But I've found that my fears of sharing are often worse than the sharing itself. Maybe you share his diagnosis with someone, maybe you share that you feel like an outsider. It's those little steps that eventually lead you down the road to not feeling so much like an outsider.

Start with someone you trust or the closest thing to it. One step at a time. And you may see yourself become more a part of the fabric around you. Good luck!

I think the tough part is not knowing and the other part is knowing. Once you get yourself comfortable with the diagnosis I think you will be more willing to talk about it. I have 2 children with issues -- one has Hashimoto's Thyroiditis and the other has been diagnosed with OCD, Anxiety & ADHD PLUS has Peanut Allergies. I know over time it does get better to talk about but when he has a meltdown just open up about it. It will make you feel better and you might run into someone who knows something about it. You should try to network that will help you educate yourself more as well as those around you.

When life hands you lemons just make some lemonade!

Know that your not alone... My sister's son was also diagnosed with PDD, it's difficult for her too. I know the more we educate people the easier it will be on you and your family. So many of our friends and family (including myself) had know idea what this was, he looks completely "normal" so people just don't understand and once they have a better understanding the less likely they are to stare and the more likely they are to ask to help....

My now 7 year old son also was daignosed with PDD. I never felt like I needed to explain his behavior. All kids have their quirks and melt downs and act shy. I just feels like it's a thousand times worse becasue it's your child who is doing it - and you know why. That's not say that there weren't times when my son acted inapropriately towards other kids. Depending on what he was doing, like pulling a little girl's hair, I apologized to the Mother without explaning his situation - and she was fine. Another time we were at Davis Farmland, and a Mom scolded him for hogging one of the sprinklers in the sprinkler park. I quietly told her that he had autism and she backed off. I always felt like if my son wasn't committing some insanely horrible act I didn't need to explain his diagnosis.

I asure you most people have been there before and the most important thing for you is to stay focused on your son and keeping him save in a meltdown and try to avoid situations thAT may bring on meltdowns ie keeping him well rested feed plenty of snacks give clear expections of behavior prior to events don't change them unless you absolutly have to. Kids want consistancy if they can act a certain way and get results they will..... good luck mother of 13 11 8 1yr old K.

Hi P.,
I would definitely tell others about your son's diagnosis. It will allow the parents to explain it to their kids. You should also get it in writing and bring it to the school. That will get him coded and he will begin to receive supportive services like OT and speech therapy among others as the district sees the need.

My son was diagnosed ADHD in second grade and finally Aspergers Syndrome about 3 years ago. He doesn't really remember the OT but he still uses the tools they taught him now in 8th grade. One doctor described it like looking through a wooden shutter and flipping the slats up and down. You only catch a bit of what is going on on the other side. That is how our children perceive the world around them. As a teenager he still feels like an outsider and is more comfortable with children 2-3 years younger than he is. Socially he is immature but academically he is very mature. You have to fight with the school to get him the services he needs.

There are many resources. Look for something like the Asperger's Assoc. of New England near you. Here is an article from their web site http://aane.org/description.html. Read Temple Grandin's book to get a feel for what your son has to cope with. Tony Attwood's Asperger's Syndrome A Guide for Parents and Professionals. and many more.

Remember if you have met one person with Aspergers Syndrome you have met one person with Aspergers Syndrome. It is a spectrum disorder and affects all the following traits on a scale from zero/none to 100/totally.
*Theory of Mind/Perspective Taking or reading others
*Executive Function or organization
*Central Coherence or detail vs. big picture
*Receptive Language or they only understand and process 7%, be specific in directions, no lists
*Expressive Language or they have no mental dress rehearsals
*Social Behavior needs to be taught
*Sensory Issues
*Intellectual Resources/Memory or photographic memory
*Anxiety alone time helps
*Rigidity black & white, no grey, One way to do things, rote
*Obsessive Passions, Interests, Passions they will absorb all they can for 4 - 6 mos. and move on on avg.
*Willingness to seek Help/ understand themselves, this comes with age, my Joe is at this stage
*Anger Management need behavior modifications
*Motor Coordination very clumsy compare to peers, get teased, may need scribe for written work, or voice recorder or Joe has a portable like laptop called an AlphaSmart
*Motivation

Good luck and be patient. I will pray for you to have strength.
D. C
48yo breast cancer survivor, girl 16, boys 14, 11 & 8

Real moms understand that our children are little people and not robots! Hopefully some of these moms will become your friend--friends will not judge you. Please speak up and tell them the truth and maybe one of them will offer to step in and help when you are at the end of your rope one day. This is how you will find those special women out there. Communicate to them because they may want to help. You are not an outsider. If anyone makes you feel that way, move on and know you are doing the best you can. You'll find those special friends out there who'll want to stand by you.

Once you come to terms with PDD and the fact that your son will be ok over time with lots of help and teachings, you will not feel like and outsider all the time. There will still be days you wonder how people are looking at you. You need support and help right now to know and understand about PDD and what you can do to help your child. Try the site LDonline, it has great resources. There's an "ask rick" section too...take advantage of his knowledge...I worked with him and have known him for years, he's very knowledgeable and helpful. Above all, yes share what is going on with your son with others. Understanding is the first step to acceptance.

Good luck! Be strong, it will get better!

I have worked with a lot of autistic kids...have you tried contacting your local autism support center? I don't know where you are but there is a great one on the North Shore based in Danvers - they run support groups all over and have a free library and lots of family events.
M.

I just wanted to tell you that there are plenty of parents out there who understand that children each have their own issues, some tougher than others. Anyone who will judge you rather than support you is probably someone you don't want your child around anyway. Of course, for those situations where you can't avoid such people, say birthday parties etc., I think educating people about your child's needs is always a good idea as ignorance tends to lend to insensitivity. Good luck to you and your son.

Hi there,

I also have a son with PDD-NOS, who is now 7 years old. First of all, I want to let you know that it does get better! But for now, you need to deal with the tantrums the best that you can. It is embarrassing and there were so many times that I had to hold back the tears as I was dealing with all the emotions that I'm sure you have too. Some people I know choose to explain what is happening to those around, while others say that it is none of their business. Most of the time I would just remove my son from the situation and try to find a quiet place to calm down. Sometimes this meant leaving parties early, leaving stores, and restaurants. It really stinks. But in the long run, my son learned that he was not going to get his way by throwing a tantrum.

As far as other parents go, I'm sure that you will find some that are supportive that you choose to tell about your child's diagnosis. Others will not understand and may even say hurtful things.

I'm not sure how much of this helps. There are support groups out there, such as the Autism Alliance of Metrowest, that really helped me.

Good luck!

A.

I am sorry that you are feeling that way :(.. I taught special ed for 5 years before having children of my own. The parents where very out spoken about their children's disabilities for the most part. I think you will find that more moms will be understanding and truly in awe of your family for all the extras you may need to do all day with your boy. I was also often told that support groups are fantastic!! Wouldn't it be great to talk with other moms with similar situations? I think it is great that you are reaching out.

I think I would tell the parents first and be upfront. But I do not have that situation , so I can not be sure.

I have seen a few groups out there on meetup.com and cafemoms.com that are based on moms of children with disabilities. That may be a great resource for your family if not now later. But always remember that someone has gone through and is going through the same thing you are right now so you are not alone..

Good luck!

C. Bentley

the next time youre at a get together try and single out one mom(paybe someone youve seen around ) and start there. Sometimes after you tell just one person it gets easier. Once people realize your sons issues they will be more empathetic to you and him. My oldest son had something similar when he was younger, Ive been there. Its hard to think that your child's the only one with differences. BUt believe you me most kids have something or other going on. Hang in there and good luck! Let me know if you need any help!

Well P.

This is a tough call, how old is your son???.
Instead of letting him play by himself, you should have incorporated him into the party a little more.
You are going to feel out of place and the outsider until your son finds a few close friends and the friends parents feel comforable enough to keep the friendship going. I feel that you should not have to "tell" everyone at first, i made this mistake a long time ago/my oldest son who is 20yrs old is moderate autistic.
I can't say that everyone has accepted us with open arms, but at the school everyone is included now, so that helps. Tommy has a few close "special" friends and cousins"thats how it turned out for us, he interacts with people in town and everyone thinks the world of him, but the friend thing is a tough call and has been for us.
Get him involved in locally special olympics or your local special park and rec programs it was the best thing that we did and network yourself with the parents.
Also the school has to include him with after school activities/pick something and get him involved or even boy scouts where you could get involved also/ all this helps create friendships I think it helps to have a starting base. Its very important to mainstream our special kids but it is also important that they can hang out with their friends and be themselves.

Good luck to you P.
you can also email me anytime

L.