New DX need ideas and opinions...

iVillage Member
Registered: 10-09-2004
New DX need ideas and opinions...
7
Mon, 11-14-2005 - 10:20am

OK I am new here... as of last week my 3 year old ds was dx with PDD-NOS. I knew it was coming, well maybe not that but SOMETHING! So I am new to all of this! He was dx at 18 mos with sensory integration disorder. He has been recieving OT and ST since then. He was dx ADHD by a quack Psych last month. Then the after questioning the neuro about AS they said it appears to be more PDD than anything. So I NEED help here! Here are our "current" issues. And yes they change FAST! LOL!
1 My ds drinks NON STOP! He always wants fluids and prefers it over food... any ideas on this? I started carnation instant breakfast cause he was beginning to lose weight, he seems to like it thank god!

2 He REFUSES to go to the bathroom. I know he is capable and often holds it all night! But doesn't want to go for me! At school he tells them he needs to go, go figure!

3 He has this preoccupation of spiders and bugs lately to the point we can be playing and BOOM he says spider bite me mommy. I haven't seen much about fears etc... any suggestions?

Overall he is a VERY hyper little boy at home, yet at school he listens and tells the other children how to behave. He is extremely aggressive to his younger brother, which we haven't been able to stop. He quit for about a week and started it right back up! So any recommendations are greatly appreciated! We tried ABA before a dx and they blamed it all on parenting and told me to be more firm. I am a pretty strict parent though and overall it just seems to make behaviors worse! THANKS!

iVillage Member
Registered: 03-26-2003
Mon, 11-14-2005 - 4:58pm

HI there,

I recognize your name from the SID board when I have gone there once in a while. Welcome to that club with wonderful people but none of us really wanted to join. The ASD mom's club.

I wish I had the brain power now to answer all of your questions. They do sound very familiar to me and I bet most of us. Best I can do this moment though is give you the address to a website that a friend of mine and I have started that has lots of the info there and try to come back later and answer more questions. www.asdrendrewolf.org

Sending big hugs to you.

Renee

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iVillage Member
Registered: 03-31-2003
Mon, 11-14-2005 - 8:26pm

Hello and welcome!

My DD is also 3, and was also dx PDD-NOS just last week -- strange coincidence! Like you, we've had concerns about DD for quite a while, although unlike you we didn't have her evaluated at all until this past spring, so your DS definitely has a leg up on services, etc. My DD started preschool in a special ed class this September and is receiving OT and ST; she just had a PT evaluation and qualifies for services there, as well.

A few thoughts for you, regarding your concerns:

The drinking thing: some PDD kids have issues with textures, esp with food -- could your DS have quite a bit of sensitivity with regard to food textures? Maybe liquids seem like the "safest" bet to him, whereas if he's sensitive to texture than foods would cause a bit more anxiety? Also, has he always been this way? My DD goes through food phases -- so far none have been so extreme as wanting only liquids, but nearly so! I remember we went through a period where she ate black beans (from the can), soft cheese, and bread for every meal. If this is a recent development, you might try waiting it out for a while... Also, perhaps offer things like soups (even chilled soups that he could drink through a straw), smoothies (with peanut butter, protein powder, yogurt, frozen bananas or berries, etc.), and things like that, to offer him nutrition as well as maybe ease into some new textures/flavors?

The bathroom... *sigh* We're going through bathroom issues, too, so I don't know that I can offer all that much advice. With us, it's the opposite: she goes to the bathroom all the time (successfully) at home but will refuse to go at school. Which way is easier? I have no idea.

My DD has certain fears as well. Sometimes I think that she just has a lot of anxiety in general -- it's got to be sooo difficult for these kids day-to-day, you know? -- and that anxiety manifests itself in various ways. For a while DD freaked out if any of the doors in the house were open -- cabinet doors, the door to the bathroom, etc. Everything had to be CLOSED. Then that passed, and a different fear took its place, and they wax and wane along with her anxiety level in general. The more in control of her life she feels, the easier things get all around, so I think that's the biggie. I also think that some of that is a "typical" 3-year old thing -- they say that a lot of kids start having nightmares at age 3, for example...

We've had some aggression issues here, too, although they've lessened quite a bit since she started school. Part of that is the empathy thing, as far as I can see: she really can't put herself in her brother's place, so if he has something she wants, she just pushes him down. We're working on it, but it's a challenge every day. I know that people on this board have had a lot of luck with social stories, so maybe that's something to try...?

I'm really new at all this too, so I'm sure that the other BTDT people will have lots of great suggestions for you!

Jennifer :)

iVillage Member
Registered: 08-26-2005
Mon, 11-14-2005 - 9:30pm
Welcome,
I'm sure you are feeling a little shell shocked right now but this board and all the women who post here are very helpful and supportive of one another. There have been many days this website has saved my sanity(LOL). It's just nice to know someone else knows what your going through. My DS jake who is 2.5 was diagnosed in June with PDD-NOS but I have known since he was about 11 months old something wasn't right. He has gotten great services from E.I since he was a year old so we were already ahead of the game before he we got the diagnosis.He too is a juice guy! When he was an infant up until he was around 2 he ate everything in front of him but then suddenly all he wanted was juice or milk and he would fill up on that and not eat anything else.Slowly over time it got to the point all he would eat was apple sauce and grilled cheese. The only advice I can give you is to give him his meals without a drink. I would always give Jake his drink with his food and he would gulp it down and not even touch the food. If he drinks milk try and cut it down. Jake was drinking 4 cups of milk a day at one point. I now only give him 1-2 cups and I n water down his juice. I'm just starting to potty train Jake now and believe me it is no fun.My sisters dd(NT) is also 3 and will do well at home but holds it at school to the point she had an accident last week.I don't have any aggression problems with Jake so far but for a while he would do typical 2 year old stuff when someone at playgroup took a toy from him he would get very upset and lash out. I just tried to get him to use words instead of hitting and it finally seems to be working.I have a question for you. My dd is 16 months and although she has no official diagnosis her therapist thinks she has SID.I'm not sure if it really is that or if I have another child with PDD. What changed with your son from 18 months to 3yrs that they have now given him a different diagnosis?Was it related to his speech?
Thanks
Teresa
iVillage Member
Registered: 02-24-2004
Mon, 11-14-2005 - 9:55pm

Hi!

Welcome to the board. I'm Michelle and I have 2 boys. Nathan is my youngest, 6 1/2 and HFA. My son was also a big drinker! He has started to slow down a bit, it kinda comes and goes. But you have to look out if you have a cup, because he will seek it out....and drink it all!! lol Nathan goes to the bathroom ok at home, no problems. But he somehow forgets to go at school. I don't know how he does it!! I remind him everyday before I drop him off at school, and then he remembers. Lots of kids on the spectrum have fears. My son is scared of cats and dogs. And anything that flies!! lol He's ok with crawling bugs, he likes to squish them, go figure!

The aggressiveness and hyperness....well, it's common. I have found that certain things do make it worse. Consistency is key. Any changes in his routine, any added stress can take a huge toll on Nathan. Things that might seem trivial to us, can be very big for them. And it's also common for our kids to act up at home. This is where they feel comfortable and safe. Nathan is also well behaved at school. But can be very bossy and demanding at home.

Disciplining is difficult. I explain everything to Nathan so he understands. I also have to be careful because some bad behavior can be do to sensory overload, or just not understanding what's going on (frustration!). And I don't want to punish him for the wrong reasons!! Sometimes he's just being 6. I think paying close attention to your child and learning as much as you can about him, will help in this area. It took me awhile to get this down!! He is different than his brother. But I do expect the same from both. Being nice, no hitting, being polite, no talking back....you know, the basics. I just have to go about teaching it to each of them differently. Nathan needs more repetition, and more explainations. Some things take longer, but I do see results!

HTH,
michelle

iVillage Member
Registered: 10-09-2004
Mon, 11-14-2005 - 10:15pm

Teresa... to answer your question. My son had issues since birth, I knew then he was a medical mystery for me LOL!
When my son was 19 months old I became pregnant with my second. Everyone told me his behavior was getting worse because he could sense the changes etc. I didn't think that was it though. It started almost as soon as I got preggo (NO JOKE)! He became very aggressive towards me and non compliant with everyone. He stayed his sweet self for daycare and school though GO FIGURE! I will post more details on an intro eventually!

As far as the eating and drinking, I know a lot has to do with textures! But I have tried so many things... a lot of it is control I think. Just like his BMs which he started to hold in a few mos ago. We make a trip to the dr about every other week because he starts vomiting he gets so sick from it.

iVillage Member
Registered: 10-03-2004
Tue, 11-15-2005 - 10:50am

Dear Orlando Mom,

Our son (dx'ed PDD-NOS) wasn't into food, in fact he didn't want anything but breast milk until he was 2! And, yup, drink, drink, drink. I did smoothies and vegetable juice, milk shakes, lots of different ways to do liquid and make sure they are getting nutrition and calories. Now at age 8, he eats like a horse, and as it happens, eats super healthy as well, salads, fruits, etc. I take no real credit for his tastes, he did this on his own, but I have never forced him to eat anything he didn't want. I do have him taking complete omegas in orange juice in AMs, he doesn't love that but will do it because I have convinced him it helps him to get stronger!

I agree with Michelle that home is the safe place to act out and de-stress, such an honor, right? But if it helps them to get through their day....

My first question about bathroom troubles would be -- what happened around pottying a few months ago? Actually, the fact that he pottys at school but NOT at home is a little unusual from what I know. Is he completely potty trained? 3 is that borderline age, many of our spectrum kids are still in diapers and my son took until almost age 5 to learn to go without diapers. Could his difficulty at home be related to potty training?

Any difficulty with the location of potty or actual bathroom at your house? My son once had a big water bug scare in our bathroom and refused to go in there for about 8 months, so we went back to using a portable potty and placed it in another room until he was feeling safer...

I remember how much harder it was figuring all these things out when our son was so young and his ability to really communicate what was going on with him was more limited. NOW we hear about things that are bothering him, so much easier.

Anyways, welcome to the board. Again, home is the safe place where they can be their real selves and get the comfort and love they need while their behavior tells you that that daycare wasn't all that easy a place to be... The more your son learns and grows in capabilities and comprehension, the better times you will all have at home as well.

yours,

Sara
ilovemalcolm

iVillage Member
Registered: 03-26-2003
Tue, 11-15-2005 - 11:03am

My son did the opposite with potty issues - he had problems at preschool. We finally figured it out and a quick solution solved the problem. He was potty trained by almost 4 - never had any accidents and then all of a sudden he is at a new preschool (old one "asked us to leave" due to behavior problems) and he started to wet himself during after lunch nap. He was actually afraid of the bathroom they were taking him to because it had automatic flush urinals. He went into the stall one day (they went in alone - no teachers allowed - no other children as well) and the urinal flushed and scared him. He refused to use the bathroom from that day on. Luckily we figured this out after a week of him trying to hold his urine all day only to release it during naps. There was a bathroom on the floor below that did not have automatic flush toilets/urinals and he was fine from that point on.

So like Sara suggested - think if there were any potty/toilet/bathroom issues at your house - could be something like that.

Just my two pennies...

((HUGS))
Christie