New: DS w/PDD-NOS - ??s and Intro

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Registered: 02-17-2002
New: DS w/PDD-NOS - ??s and Intro
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Fri, 09-15-2006 - 3:41pm

Hi there. I am soooooo glad to have found this board. My 3.5yo DS was diagnosed with PDD-NOS this week and I have so many questions, emotions, fears, etc. I'll start with my questions, as I'm afraid my intro may get long and nobody will read far enough to get to the questions.

- how old was your child when diagnosed?
- for older kids - how is their progress? Are they mainstreamed?
- Is anyone using fish oil supplements? Are they helping with behavior and/or attention span at all?
- Are you seeing a behavioral specialist? Is that helping?
- what are the biggest behavior problems you've had and what has been the most effective way to deal with it?
- does your child have any sensory issues? Any experience with toe-walking?
- What kinds of things should we expect? Anything that the literature doesn't mention?
- Do you have any suggestions for websites, books, etc. for more info about it?
- How have other people (friends, other kids) reacted?

Sorry - I know it's a lot of questions. Now for some background.

We started having some concerns about DS when he was about 7 months old. He had crossed eyes so we took him to an opthalmologist. She noticed that his optic nerves were pale and ordered an MRI to rule out brain tumors, etc. The MRI showed severly enlarged ventricles in his brain. Since then he's been seeing a neurologist and neurosurgeon a few times a year and has had multiple CT scans, which continue to show his vents to be stable or possibly decreasing in size. At 18 months we joined Parents and Teachers. Right from the start the parent educator told me to get him evaluated by our county toddler services. I resisted because all of his specialists told me not to worry and that he only showed minor delays and seemed to be catching up. At 2.5 I finally called toddler services. They evaulated him and said he qualified for OT and ST but only barely. He did that until 3 and then we transitioned him to the school district. They felt like he warranted going 3 mornings a week and required summer school. At his 3 year check with our ped., I asked her about the possibility of autism and she said it was a possibility but it was confusing because he had some of the characteristics but not some other key ones. At our year-end meeting with his preschool teachers, they voiced concerns about him having a PDD. So our ped referred us a developmental ped., who we just finally got in to see this week.

He said on the CARS test that he was i the upper end of non-autistic range. On the DSM-IV test, he approached 1-2 criteria in each category and meets 1 criteria in 2 categories. So he said he's not autistic but has PDD-NOS. He said he's seen a lot of kids with enlarged ventricles show autistic characteristics. He said we're fortunate because he's very bright and we've gotten early intervention and we live in one of the best school districts in our area with an awesome preschool program. He said he has immature social interactions, weak theory of mind, poor play skills, excessive inattention, some sensory aversions, poor eye contact.

In lay terms, what we've seen is that he love adults - he climbs on them, hugs all over them, loves to play with hair, will talk your ears off. He has no stranger fear at all. But he doesn't play with other kids or relate to them. He just hangs back and watches other kids. He's obsessed with cars. He is constantly carrying one around and likes to spin the wheels. He can identify every make and model of car. He likes to line them up. He has issues with pronouns (says you when he says me, etc.), refers to himself in the third person a lot. His teachers and doctors say his vocabulary is huge but he often says things without knowing what he's saying. He repeats things and doesn't necessarily understand them. He has a very short attention span. He has some behavior issues - throws tantrums if we don't let him do what he wants when he wants. Likes to throw things just for fun and doesn't understand or seem to care if he breaks something or hurts someone. Lately he's become obsessed with doors and drawers being shut.

It's all a lot to process. We have a lot of concerns about his future and what we can do to help him succeed as much as possible. So I'd love to hear any insights, tips, experiences that anyone would like to share with me!!

Trisha

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Registered: 03-26-2003
Fri, 09-15-2006 - 4:31pm

Hey trisha,

Just answering all those questions would take me a while, lol. I will try to help some and keep it short but I am supposed to be putting togehter crock pot dinner and getting ready for class tonight.

1- age at diagnosis, dd12-(3=dev delayed, ADD, dyspraxia, 4=PDD-NOS, 7=Aspergers, 11=Aspergers and epilepsy) = ds10 (3=SID, rule out PDD and auditory processing, 4=ADHD, OCD, anxiety, etc up to 7=Aspergers and 9=high functioning autistic/ASD - he should have been dx'ed at 3)

2-progress? Mostly good. DD has been mainstreamed since K and is a great kid/teen, lol. She is in a full inclusion SDC class but it isn't the right place for her. She should be able to be mainstreamed still if they provided the right supports. I could go on and on but don't have time.

DS should have been diagnosed earlier and we had a rough patch in the middle. He is starting to do pretty darn well now. I am impressed this year. He is now mainstreamed 1/2 of the day and is doing great academically. He scored advanced in all areas of his state testing. He has a 1:1 aide as well and lots of supports and modifications.

3-Fish Oil? Yes, love it.

4-Behavioral specialist? Have had outside ones in the past. have a therapist we use that specializes in ASD's and is great with behaivor stuff. It is awesome. DH and I are/were both behavior therapists and even we have found it helpful to get outside oppinions and insight.

5-biggest behavior problems and effective management - that would take me a novel. Will have to do another time.

6-sensory issues? OHHHHHH yeah baby. All 4 kids with that. ASD ds is the worst though. Toewalking though actually not.

7-what to expect - nother novel - sorry nother day.

8- book or website suggestions? www dot asdrendrewolf dot org. And loads other but again will take to long. When I get to read more about your boy I will make book recomendations. Currently I am digging the book "More than a Mom"

9-How have others reacted? Depends on who. Some are supportive, some are not, some are down right nasty and some are too helpful or at least think they are. Lots of variables with that one.

Welcome here. most of all you will get lots of info and support here. Over time all those questions will be answered much more thoroughly for you. Big (((((hugs))))). This is a tough time in your life right now.

Renee

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iVillage Member
Registered: 06-25-2003
Fri, 09-15-2006 - 4:44pm

Trisha,


Welcome. We're glad you found us. Please feel to make yourself right at home here. We have comfy chairs, tea, coffee, cookies and chocolate. We are open 24/7, and The fire is always lit.


I am Paula. I have two kids who are or are likely on the spectrum: Peter is 8 and in 3rd grade, Siobhan is 6 and in 1st.


- how old was your child when diagnosed?


Peter

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 12-22-2003
Sat, 09-16-2006 - 12:58am

how old was your child when diagnosed?

Noah was Dx'd as PDD-NOS @ at 4. Over the years, the Dx has morphed into Asperger's.
Claire was officially Dx'd as "traditionally autistic" @ 4.5. But I have no clue what "traditionally autistic" means. In reality, she's in the middle. She's far from high functioning, and far from profoundly affected.

- for older kids - how is their progress? Are they mainstreamed?

My son is mainstreamed and does great academically. Socially, he struggles big time. He receives speech and "weekly visits" from the district's autism consultant.

My daughter is mainstreamed with a 1:1 aide. Academically, she's amazing. Socially, she really doesn't give a rats butt. :-) Everybody loves her because she's a beautiful little blonde girl who's sweet as can be. She just happens to lick walls. (Yes ladies...we're back to THAT again.) She gets ST, OT & PT.

- Is anyone using fish oil supplements? Are they helping with behavior and/or attention span at all?

No.

- Are you seeing a behavioral specialist? Is that helping?

No. They're not readily available in our area.

- what are the biggest behavior problems you've had and what has been the most effective way to deal with it?

This would take a month to write.

- does your child have any sensory issues? Any experience with toe-walking?

Yes, yes, yes...lots of sensory issues. Both my kids were toe-walkers, but my husband is a PT and he was never concerned about it.

- What kinds of things should we expect? Anything that the literature doesn't mention?

Since every child is different, I hate to tell you what to expect - but I'll "ditto" what Paula said. Expect the unexpted.

- Do you have any suggestions for websites, books, etc. for more info about it?

Wrightslaw.com - learn it, live it, love it.

- How have other people (friends, other kids) reacted?

Mixed. A lot of denial on my side, a lot of self-rightousness on DH's side. My MIL has been known to make comments like, "I need to try to mainstream Claire more with the rest of the kids." Huh? You want to mainstream her when she comes over to play. GET A LIFE!

Meez 3D avatar avatars games

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Registered: 09-13-2006
Sat, 09-16-2006 - 2:20am

Welcome, Trisha,


I'll try my hand at a few of these questions.

iVillage Member
Registered: 03-26-2003
Sat, 09-16-2006 - 1:07pm

Hi and Welcome......I'm Christie....I have two boys....Vaughn is 8 yrs old and he is my aspie.

- how old was your child when diagnosed?

Vaughn was officially diagnosed less than one year ago (December 2005).....I had no clue that anything was out of the ordinary until he entered preschool at age four and a half. He was kicked out of preschool within 2.5 months and his teacher told me to have evaluated for a developmental delay. I had him evaluated through our school system and they came back with "his is incredible intelligent and probably just bored."

- for older kids - how is their progress? Are they mainstreamed?

Vaughn has been mainstreamed his entire educational experience.....this is the first year he has a pullout in the morning and a pullout in the afternoon.....mainly to help reduce the stress of the entire day.....never had an aide. Academically he has always done well....behaviorally is a different story.

- Is anyone using fish oil supplements? Are they helping with behavior and/or attention span at all?

We use Nordic Naturals Children's DHA along with a multi-vitamin everyday for over a year now. We have noticed many improvements in Vaughn....but he has a lot of supports and therapies going on so it is difficult to say what (if any one thing) is helping him.

- Are you seeing a behavioral specialist? Is that helping?

We have worked with a behavior therapist for over two years now.....she is the one that mentioned Aspergers to us and got us to go for an MFE and IEP at school. She is fabulous.....she has even come to several different meetings at school to help the staff work with Vaughn better.

- what are the biggest behavior problems you've had and what has been the most effective way to deal with it?

Vaughn has a general anxiety disorder along with his AS......anxiety and stress from school makes him meltdown/tantrum/explode......the things that have helped him tremendously have been sensory breaks at school (for about 5 minutes every hour).... pullouts to a smaller, quieter classroom twice a day....modified assignments (limited writing assignments, taking math test but not timed.....timed tests flip him out....too stressful).....social skills group that meets twice a week after lunch.....he did not qualify for OT at school (long story) so we take him to a private therapist twice a month.....setting up a visual schedule at school.....his desk being positioned in the front of the class next to the door (otherwise he feels trapped)......I could go on.....there are a lot of seemingly little things that really help.

- does your child have any sensory issues? Any experience with toe-walking?

sensory issues - yes.....he is primarily sensory seeking.....chews on stuff alot.....he likes the brushing we do and the joint compressions (he will actually ask for them).....he is also very overly sensitive to noise (loud and unexpected noises)

- What kinds of things should we expect? Anything that the literature doesn't mention?

I agree with the "expect the unexpected"

- Do you have any suggestions for websites, books, etc. for more info about it?

as stated OASIS is a great resource (books and website).....there are two small, easy reads that I love (I believe Renee suggested them to this board)....'Aspergers Syndrome and Difficult Moments' and 'AS and Sensory Issues'.....look up Wrightslaw to help with spec ed info.....look for a local support group - the one I found has been a great find - they have all the info on what is available to you locally

- How have other people (friends, other kids) reacted?

my parents were the first people to blame me (and my bad parenting) for my son's behavior.....when I told them about the diagnosis - my dad went to the library and got out Tony Attwood's book and read it - he called me and admitted that he thought Vaughn was spoiled and that is why he had behavior problems....he apologized and both my parents are trying really hard to learn as much as they can about AS.....they have restructured family holidays around my son so that it is easier on him....for example, my dad use to try to do battle with Vaughn over his picky eatting especially at holiday time, now I give Vaughn his dinner before going over grandma and grandpa's and he can have dessert over their house with no hassles from anyone.

Again, welcome here and I look forward to learning more about you and your family.
Christie

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Registered: 10-03-2004
Sat, 09-16-2006 - 8:33pm

Hi Trisha,

Welcome to the boards. This is a wonderful place to come to get info and support!! Of course the fears and emotions are normal and I hope you have a good support system of loving friends and families there to help you out. We have been so lucky in our support. Raising a child with neurological challenges is a huge job!!!

I will try to address your questions. Please never be afraid of asking too much here or writing long, long posts. We all do it! My son just turned 9 years old, and his dx is also PDD-NOS. He is very verbal and bright, funny and yet difficult. He is getting more and more involved with the world around him, but also struggles with anger and overwhelm. He has learned lots of coping skills, but also as he ages, the challenges he is up against increase. He is the bravest of boys and a super dude!

- how old was your child when diagnosed? age 3 language delay, age 5 anxiety and receptive/expressive language disorder, age 7 PDD-NOS

- for older kids - how is their progress? Are they mainstreamed? Our son continues to make progress all the time. He has never been mainstreamed, partly because we are in a terrible, failing school system (NYC) and partly because his sensory issues still make mainstreaming too hard for him... BUT he is still ahead of grade levels in reading, math, spelling, is a great writer and performer, very musical, and has many wonderful friends. At the moment, we are pulling him from yet another special needs school that is not working out and we will be homeschooling awhile while we try to see if there is somewhere else to educate him. Ds is too smart for special ed and too sensitive for inclusion, a problem that has not stopped him from continuing to flourish as a student and great guy!

- Is anyone using fish oil supplements? Are they helping with behavior and/or attention span at all? Yes, for years now, good stuff.

- Are you seeing a behavioral specialist? Is that helping? Yes, we see a psychotherapist 2 xs a week. We've also had him working with many different behavioral therapists thru the schools, he spent several years in a play therapy group as well. All has been helpful, school ones less so.

- what are the biggest behavior problems you've had and what has been the most effective way to deal with it? He struggles with temper these days, esp. when he has missed information or feels he is being dictated to and doesn't see the reason for complying. He needs calm voice, explanations, he needs to feel listened to. He has to have expectations clearly spelled out, several times, needs to be gently reminded if he forgets or starts any sort of mis-behavior. Always he needs understanding and firm guidance that is not demanding or rigid, but is kind and has his best interests at heart.

- does your child have any sensory issues? Any experience with toe-walking? way sensory, also receptive language processing issues that make crowds, etc. hard. Also participating in a large classroom -- too much. Aural clanging, sirens, whistles, screeching --- big problems. Many other sensory problems have been resolved with OT, time, practise, lowering of anxiety. No toe-walking here.

- What kinds of things should we expect? Anything that the literature doesn't mention? The only thing I want to say here is -- Be careful of judging what seems willful --- in ASDs, usually the sensory system is overwhelmed, but as they age, they can seem oppositional when what they are doing is losing it. Keep a strong, strong sense of humor at all times and remember, they are delayed, but they do grow and learn. They will be catching up --- they will just need more help and LOTS more understanding.

- Do you have any suggestions for websites, books, etc. for more info about it? I have not been able to read too much, as I am too busy raising my dude... I talk and ask more from others who have BTDT.

- How have other people (friends, other kids) reacted? We have been fortunate. Families completely supportive, although none live close. Friends love him and us, we have made many friends with ds' friends, many of whom are like him and the best kids on the planet! We hang out with our son's buddies and their families, even take vacations together -- this has been a great resource for all of us, plus it means ds has places for sleepovers! He has had adverse reactions from other kids, but fortunately not often, he actually blends in fairly well much of the time.

Every day is an adventure. I can't say it is all fabulous, but my love and admiration for my son grows deeper every minute I am his mom, and while the trials and pain are so much harder, the rewards and accomplishments of my child are far sweeter than what I observe for parents of NT children. I am exhausted, I have never worked so hard in my life (and I was no slacker before I became a mom) and yet there is nothing so valuable as my work as a parent to this child.

I plan on sleeping alot when I am very old...

Sara
ilovemalcolm

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Registered: 05-16-2006
Sat, 09-16-2006 - 11:13pm

Trisha,
Welcome to our safe haven. I myself just entered the ASD world back in April. April 19th to be exact when my ds got his PDD lable. Adam is doing great. Yes there are many more days ahead but when this is what it is, you take one day at a time.
Adam was 2 year 9 month when he got dx'd. We had early intervention for a month before the FORMAL lable was put into place.
Ds had speech, OT, and behavior thru early intervention.
Now that he turned 3 in JULY he has preschool (mix of dx and non dx) 3x per week. He is in a dx'd structured playgroup 2x per week. He receives OT 2x per week and just got approved for speech 2x per week. In a nut shell my ds has 17.5 hours of some school or therepy going on.
WE are always busy, but I will say, my ds has made GREAT strides in just 6 month.
No pills or other therepy in place. We did remove milk from his diet and it has worked like a charm.

Each family has a method to their "madness".
Find out what your state has to offer families like yours and get educated.
We live in PA if that would help you.

Many HUGS your way
Nora

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Registered: 03-25-2003
Sat, 09-16-2006 - 11:27pm

Hey Trisha and welcome to the board!


- how old was your child when diagnosed?

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Registered: 03-19-2007
Mon, 03-19-2007 - 11:13pm

To IloveMalcolm

I have a 5 yo son who has been diagnosed with pdd-nos with underlying sensory issues. Like your son, he is ahead (so far) in his academic areas. He was an early talker and walker, and really things weren't a problem until he began preschool at age 4. And the first part of this school year (public school in leander,tx) was relatively fine. I had written the teach a para about him explaining his sensory issues and a little about how I thought she could help. But now, he is exhibiting self-harming behaviors, i.e. biting himself, pulling his hair, scratching himself, hitting himself on his body and especially his face. I met with the school psychologist and the prinicpal last week, and they are working on helping him, but I really have my doubts as to whether he can stay there. I am seriously considering homeschooling. What are your thoughts? I am desparate for someone who has gone through what I am currently going through to shed some light! Thanks so much!

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Registered: 10-03-2004
Tue, 03-20-2007 - 9:57am

We are finding homeschooling both great and very challenging. The biggest issue for us is keeping him stimulated and engaged enough throughout the day, plus the lack of other kids. When he was 5, he was in special needs school, which at the time was great for him. We have had mixed experiences with private special needs schools (paid for by our district) over the years, but this last one was the worst experience. Certainly the school made many mistakes, but also Malcolm's anxiety and growing need for independence didn't help. But much of Malcolm's previous growth was through special needs schools, so we are hardly against having him in them --- we just need to find the right one if he is to continue with them!!! Yes, academics have never been a struggle for him and that continues to be true. But when he was overstressed and falling apart, teachers couldn't get him to DO the work. That was hard.

Self-injurious behavior is coming also from extreme anxiety. We've never had that behavior, but we know several who have. The docs will be wanting to try meds, to lower the anxiety when there is self-injury. That may really help, I know families that have been helped by meds, also not, under those circumstances. ((((Hugs to you)))) and him, this does mean that he is under incredible duress and something needs to change so he can relax. THe pain/pressure to his body helps his sensory system relax, it is a need that must be met for him to stop. Are you working with good doctors, therapists?

Is he getting any OT, counseling through the school? Lots of OT has always been so good for my ds and his sensory needs. We had quite alot of services on our ds' IEP, which we have now been able to continue with outside providers through district as homeschoolers. Certainly I can say that our ds is getting a terrific education being homeschooled, we are able to let him fly ahead on subjects, give him plenty of time to work through things he is not interested in (this was a problem at lsat school!) and take breaks and come back later when he is overtired.

Anxiety is the enemy, I always say. Some kids do well with sensory help in the classroom, weighted vests, fidgets for their hands, beanbag chair helped my ds (to go cool down on), breaks, we needed him to have snacks as blood sugar could drop suddenly and that was a real problem, sugarless gum helped, trial and error.

The one thing I will say for smaller classrooms (8 - 12) is that Malcolm learned much more about connecting with kids during school, having discussions about academics, playing at recess, giggling and joking together than he would have (I assume) in a larger room of noisy kids. Even in the smaller rooms, ir could be hard for him sometimes. So even though academically you may be put off by idea of self-contained room or special needs school, he may learn more about how to function in a classroom there and even how to connect with other kids, which could help him more long-term. That's just something to consider. While I wold have liked Malcolm to be mainstreamed, I know that the way he did learn from ages 5 - 8 was great for him.

I hope this has helped a little. Let me know how things are going. And there are other homeschool moms here. We are really still so learning, so new to homeschooling. I feel we CAN make it work more long-term if that's what it comes down to, but we have to really restructure our lives as we both need to work, he NEEDS groups of kids, etc.

yours,

Sara
ilovemalcolm

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