Daughter Just Diagnosed with PDD

K.,

You can get inhome services called wraparound and www.autismlink.org can tell you how to get the medical card for her and how to get wraparound started.

M.

Dear K.,

Hi my name is Robyn and my son was diagnosed seven years ago with PDD at St. Christophers and CHOP. I have come to learn many things about this challenging diagnosis, but one thing I know for certain is that doctors and teachers and case workers know so little about it that all you can do is what you are doing. My son has always been mainstreamed. When he was younger I had a Therapeutic Support Staff person helping him in preschool as well as a behavior specialist.( An agency, such as ELwyn or Kencrest can assist you with placement if you feel this would be beneficial to your daughter) PDD is mild autism because it falls along that spectrum. I don't know the challenges she has such as temper tantrums, selective hearing, aversion to certain foods, places, people or being a stickler for routine (a place for everything and everything in its place). What I have always done is to pay attention to Nick without smothering him so that his voice is heard, model how to ask questions and interact with other children and basically even when I feel like he isnt listening, continue to engage and interact wih him. Remember, the past cannot be changed( you have received this diagnosis) but the future and your daughters is whatever YOU want it to be.

It's under the umbrella for Autism Spectrum Disorders. It's not the end of the world, I swear.

My middle son has asperger's and he's mainstreamed. He received OT, PT and anything he qualified for when he was younger (he's almost 9 now). It took a lot of effort and time. We got on the floor with him and interacted with him constantly. We got on his level and interrupted him, not letting him slip deeper into his world alone.

Frustration, tantrums, screaming (oh boy, can he yell), deep cleansing breaths (for both of us) and five years later he's mainstreamed. He's a little behind in reading and writing (summer school here we come again!) and a year ahead in math. He's been discharged from Johns Hopkins therapy and Kennedy Krieger thinks he's too high functioning/recovered to treat.

I'm not sure what your area is, but Children's Specialized Hospital in Hamilton, NJ (Mercer County) is where my son received his therapy and had his breakthrough.

Be wary of places that smell bad or over sanitized. Be doubly wary of places that try to eradicate behaviors with a negative response. This will only teach her that life is about pain and not teach her the benefits of interacting with the world.

For you, you need to find mom's or a parent's group where you can let your hair down and just be you. You can also hear what it's like in other houses and know you're not alone and it's not just you.

Good luck and God Bless! Let us know how things are going.

Hello K.,

I'm a clinical social worker who works with children, teens and families. Please don't panic or feel too stressed. PDD, Pervasive Development Disorder, is on the autism spectrum. It is a mild diagnosis on the spectrum, therefore can be what you expected as "mild autism." All the services that are being provided to your daughter are wonderful and right on target. The best thing to do is follow the recommendations of the professionals working with her. As not every child with PDD has the same needs, they will better know what will support her on an individualized basis. I would think that it could be a likely possibility for her to be mainstreamed at some point depending on her progress in developmental areas but even if she isn't, that just means that she's getting the kind of support she needs for her style of learning and for where she is at.

She will most likely need extra patience and attention to develop the skills that sometimes come more naturally in other people. When you are watching TV, at a park or at a mall, you can practice watching people and guessing what people are feeling based on their facial expressions, tone of voice, and body language. Look for things she does well and shower her with praise. The better she feels about herself and the more confidence you show in her, the better.

Also, find as much information as you can. Ask the professionals that visit for any recommended readings and suggestions. Sometimes there are support groups in the area for parents of children with certain diagnoses. You can call your mental health center as well and ask to speak to someone who works with children on the autism spectrum Hope this isn't too much information. But I hope you find comfort in knowing that you and your daughter are not alone and people who fall anywhere on the autism spectrum can go on to do great and wonderful things when they have support and love behind them.

PS--i saw all of the other great responses only after i posted mine. sorry for any redundancy.

Hi K.
Welcome to parenting a child with PDD. I too have a 4 yr old almost 5 with PDD. He was diagnoaed at 2 1/2 and it too swear it's not the end of the world. I noticed you are in PA---hooray you qualify for ton of stuff.
You should apply for medicade (access card...yes you are reading this correctly) and for SSI (again you are not reading this correctly). The reason being your daughter is entitled to a sleu of FREE health care in addition to your primary insurance---sadly they pay for NOTHING> my son gets speech and OT via his school and he gets outpatient services and it now free cause we live in PA. You also qualify for wrap around services like a TSS and BSC who help the child too. Feel free to email me and I can give you my phone # because it's a LONG process in the begining.
It's nutty but I DO PROMISE YOU it does get easier.
You'll be going a rush period to get all of this into place for your child and then the grief will set in. It took my grief to set in later and I suffered from major depression. No mother wants to hear there child has austim. Pdd is autim, no matter how you dice it.
I had to see a professional to help ME through this process. It's a complicated time and it can be taxing on a parent especially a mom.
Like mentioned feel free to let me know if you wanna call me because I live in PA and I can point you in the right direction on who/what/when/where to go next. My son was diagnosed April 19 2006 so I've got 2 yrs under my belt.
((hugs))

PDD.nos stands for Pervasive Developmental Delay not otherwise specified. I have a 7 year old daughter with this diagnosis. She was diagnosed at 3. It is the mild form of autism and comes in many forms. The docs use this diagnosis when your child doesn't meet all of the criteria for Asperger's or Autism. There is alot of information out there. It can be overwhelming. The Autism Society of America's web-site is a good place to start. Also the web-site for Autism Speaks....just google them. My duaghter receives speech and OT and is currently in a typical first grade class with support of an FM system, a one on one shadow and a special ed co-teacher for core cirriculum subjects. She was in special ed for pre-school through the district and then also for Kindergarden...there is lots of hope and possibility for our kids, especially with good teachers and programs early on...if you want to talk, please contact me at ____@____.com.

Hi K.,
I can imagine that your world has been turned upside down in the time span of a doctor's appointment. Take a deep breath and know that your daughter is the same child she was yesterday. I cannot relate personally to exactly what you are going through but I wanted you to know that I feel for you and what you and your family are going through. I have a good friend whose son was dianosed with Aspergers at a young age. Thanks to early treatment and involvement, he is now mainstreamed in his school (6th grade) and is doing remarkably well. There are a LOT of services and programs out there that you will be eligible for and will help her a great deal. BUT, the level of treatment will be based (a lot) on how well-informed and adamant you are about receiving all of the services that can help. Believe me, if there's O. thing I know, it's that the moms bear a great deal of the burden (and benefit) of advocacy! My advice to you is to get on the internet and research, research, research. Don't let what you read scare you--let it motivate you. Find a group or another mother who has gone through this and hang on! Learn all you can and never stop being your daughter's voice for what she needs and deserves. Remember, this is NO O.'s fault. It just is and now it's up to you to get her what she needs for a bright future. Hang in there, and please know you are not alone. God bless you and your family.

HI, I also had a daughter diagnosed with PDD who is now 15 and doing well. I also am the director of a center that runs social groups. I changed my career after running a home program from my daughter when she was 4 years old. There are more services available now to choose from and a home program isn't as necessary. It sounds like she is very high functioning too. PDD is a diagnosis often when a child is young so you can receive services to fit her needs and then a more specific diagnosis is sometimes given. It of course really depends on the child. If you want to talk more about it you can email me directly at ____@____.com or call at ###-###-####.

Hi K.,

My name is A. and I'm a 35yr old mother of 4. I work with children that have autism spectrum disorders. Children with the PDD diagnosis can be mainstreamed. I would suggest getting wrap around services. Early intervention is the best thing you can do for your child. I work for Wesley Spectrum Family and Child Development Center and my title is Behavioral specialist consultant. I don't know where you live but there are several wrap agencies in PA. You can contact me and I would be more than happy to help you however I can or you can go to autismlink.com or autismspeaks.com. Good Luck, stay positive and don't hesitate to contact me.

Sincerely,
A.

I had the same diagnosis for my son who is 3 years of age,it bothers every minute of the day.he is currently getting ot,speech ,special ,instruction and ABA.You should get her ABA

PDD - usually, PDD-NOS - Pervasive developmental disorder - is the label they give the kids when they are diagnosed with an autism spectrucm disorder, but the child doesn't fit into one of the labels already there (like aspergers, ADD, etc). My son has been diagnosed with PPD-NOS, Aspergers, tourettes, etc. He was diagnosed when he was 6. First thing for you to do, is get your child medicaid. You already have a diagnosis to back up the need for it. The reason I say this, is that there are programs available for your child through this program that are not available through regular insurance. My son has had wrap around services since he was diagnosed that have been tremendously helpful to him. Plus, the behavorial specialist he has, is there to support ME as well. He has been awesome in his support for me, giving insight, etc. My child is now 12 and is mainstreamed for most classes. He is bright, funny, artistic. He has friends. It's been an up and down struggle, but you are so right in getting your daughter help NOW. My boy received speech therapy as well when he was younger. He is in an ES (emotional support) class and has an IEP. If you ever want to talk, feel free to ask. Also, research everything you can online. I found quite a few places that gave me great information. I also found it helpful to explain things to other kids. They see someone who is different and label them "retarded" or whatever. I'd inform them that the opposite was true. With my son's aspergers, his brain would be taking in EVERYTHING (whereas you and I can "block out" unwanted information, his brain pays attention to it all). That was why he'd get frustrated. Once the other kids learned this, they were much more patient and understanding.

K., I too was in your shoes with my son last fall. My son is also at the IU and they are doing wonderful things there. I have sought some help from the local autism society and autism speaks. They both have tons of info and msg boards there for help. As for extras you could start the process of medical assistance to help pay for the medical bills and if she isn't potty trained, you could also get a Rx for diapers. Hope this helps.

Hmmm my daughter is 2, she has ongoing speech, ot & pt as well. Elizabeth doesnt walk except for holding onto something then she goes like crazy. She babbles but not sure what she says. She only weighs 17 lbs. She was born without a right eye as well. When I got her when she was 3 months I had genetic testing done and they found that she had an extra X chrome. In my own research I discovered that it can cause delayed development. I started her with early intervention and they have her at delayed by 6-12 months in some areas. Sometimes I wonder if they are wrong and if its more....Does any of this sound like anything with your daughter??

Dear K.: Working with doctors, and all kinds of labels is really confusing, isn't it? Currently, autism is measured along a "spectrum," kind of a "range" from mild to severe, in a way. Pervasive developmental disorder is a part of that spectrum, as is autism, so they are definitely related. You might ask the doctor if he is using the terms interchangeably, or if he means something different from autism when he says PDD. Probably you, and the doctor, can get more information from the more specific reports of the therapists and teacher in the preschool classroom your daughter is in, as to what the problems are and what you can do to help her progress. I worked as a speech pathologist in 3 Montgomery County IU preschools that were classified as "autistic support." It was a great place for the kids and they made a lot of progress. As far as mainstreaming, that will be everyone's goal, and I think she will be helped to do that as soon and to whatever extent that she can. Some of the kids in the preschools I saw also attended "typical" preschool, either on certain days, or at another time of day, when they were ready, in addition to the IU preschool. Good luck!

The early intervention programs are wonderful; a lot of children progress a lot. it is great that you are starting early. find a support group in your area. I started one through my son's school. Get suggestions from the teachers of how you can help at home. Do you have the MA insurance, this will help you to receive extra services. This disabiility can improve with education but it will not go away.Have faith that as long as you are doing your best, your daughter will do her best. It is a very broad disability as kids are so different from each other meaning some are very severe and some are very mild. Some are great in some areas such as math, computers etc. My son is mainstreamed now with extra support.
Hope this helps.
C.

It is good to know that your daughter is receiving speech, ot and pt right now - it is something that she needs to help her improve. PDD is on the autism spectrum and a higher functioning form of autism. I would suggest you look for this book in the library to read and look into other forms of treatment that may be helpful to you and your family. "The Autism sourcebook: Everything you need to know about diagnosis, treatment, coping, and healing -- from a Mother Whose Child Recovered" Exkorn, K. Siff. It is easy reading and explains a lot of the basic information and options that are out there. Getting informed and advocating for your child is the most important thing you can do. Good luck.

Marcy

This isn't for everyone and most MD's have never even heard of it, but it often works for some kids.

Check out the different dietary suggestions on different autism sites: such as the DAN protocol or TACA. We eliminated soy from our son's diet and his "issues" improved so much we will now start him in kindergarten in the fall.

There is hope for your child. I know the feeling of loss, hopelessness and fear. You both will be ok, you just need to find what works for your child to function at her best level.

Hang in there and do some research. There are many, many online support groups, blogs, websites, etc. In time you will find what helps YOUR child.

PDD is on the autism spectrum, and is a mild form of autism.

there are a ton of resources available online.

Hi K.,
A good friend of mine whose son is also PDD-NOS said to give you these resources:
www.autismlink.com - this is a local group with autism resources
Join the Yahoo group pittsburgh_autism My friend highly recommends this one - she said they discuss everything from therapies to working with school districts to really practical tips on working with your child.

And FWIW, my friend's child is in a mainstream kindergarden this year and is doing well.

Hi K., PDD NOS is just a lame way of saying Autism. A lot of doctors are using it because it isn’t real specific but it will still get your child the services they need. I have a 10-year-old son and when we meet with the neurologist he was diagnosed with High Functioning Autism with some characteristics of Aspergers. When I received the diagnoses report he used PDD NOS as the diagnosis. I made him change the diagnosis because it isn’t taken as seriously. It really depends on the case, some kids will be symptom free adult if they get the right services as a child. My son is also main stream but he has a one-on-one for the entire school day. He has trouble staying focused and on task, so the one-on-one has made a huge difference for him. You really need to talk to her teachers and figure out where she needs the help. All I can say is be involved and educate yourself because you are your child best advocate. Best of luck.
J.

Dear K.,
My nephew has also been diagnosed with PDD. I think the developmental specialists use it as a diagnosis, when they don't want to call it autism, and they can't blame it on something else. My brother and his wife have done all of the same things you have, the OT, PT, and speech therapy. You are doing all of the right things. He is in a private school currently, but they plan on mainstreaming to public school when he reaches kindergarten. He seems to thrive when he is with other "normal" children, and gets annoyed when he is being tested or having therapy. So, I think mainstreaming will be the best thing for him. I have no idea how difficult it must be to get such a diagnosis, but I have seen how disappointing it has been for my brother. On the other hand, I like to think of his diagnosis as a blessing....it has helped my brother slow down and enjoy the little things in life. As long as you love your child and do what you think is best for her, you are doing a great job! Good luck.
J. W

Hi K.,

I am sorry that you are going through this, it is a very difficult issue, and a true rollar coaster ride of feelings. One of my twins has PDD-NOS (dx'd at 4 also), and he received OT and Speech at a intermediate unit preschool as well. It wasn't until he was 6 that we found out about biomedical treatments, which have literally changed his (and ours) life. There is an overwhelming amount of info about this, so go slowly and give yourself time to process it, but the sooner you start, the better off your daughter will be (thousands of children are getting better with this sort of intervention). It involves finding out what she is deficient in in the way of urine, hair, blood and stool tests (sometimes one can tell you alot). Then, with your doctor (a "DAN! Dr. who specializes in treating children on the spectrum - stands for Defeat Autism Now!), you go about treating your child through vitamins, supplements, and sometimes chelation. We have done it all, and have had incredible results, so much so that we have had teachers call us and ask if we had put him on medication, not believing the changes in his ability to behave appropriately, engage socially, cooperate, etc. THERE IS HOPE! Maybe you have heard about all of this from Jenny McCarthy's recent media blitz on Oprah, Larry King, etc? Here are some links to get you started:

www.tacanow.org
www.nationalautismassociation.org
www.safeminds.org
http://generationrescue.org/

Feel free to email me for more support!

Meg

You will need to learn much about diet. There are sometimes certain foods that trigger symptoms or behaviors. Use your computer as your research tool. Some docs do recognize the symptoms but not all know what to do from there. There could be an underlying metabolic or mitochondrial condition that is antagonizing her symptoms as well.

Research, research, research.

Here is a group that I find useful.

http://health.groups.yahoo.com/group/Meta-mito-autism

email me anytime!

D.

Dear K. -

Hi, how are you? I was wondering how the progress with your daughter is going? I work for a company which provides a variety of services to children with Autism, PDD and various other diagnosis. Maybe we can help in some way. Feel free to contact me at ____@____.com and we can talk in more detail.

Thanks,
E.