PDD NOS - Info - Vent

Okay - for all who didn't know before - Chandler was diagnosed when he was 3 or 4 with PDD-NOS which falls under an Autistic Spectrum Disorder. As if this is not all confusing enough all by itself. For a long time we had a village of doctors that have seen Chandler since he was 3 years old and they have supported me as a parent for all of this time while diagnosing Chandler and assisting me with finding ways to learn, deal and understand him.

He continued to see these doctors when several appointments were postponed about 2 years ago because of family vacations, planning the wedding, selling and buying a new home... then when Paul and I were married June 2007 I found out that Chandler lost his SSI due to Paul's income counting since we were married, then I found out that he also lost Medicaid because he lost his SSI. So the whirlwind was pretty overwhelming and I simply haven't done anything for the last 18 months because after several phone calls to my insurance provider I found that none of his village of doctors were covered by my insurance so - long story short we were up a creek.

Well - Chan has done better in many aspects over time, tantrums are far and few between, melt downs are not as severe as they once were, he has started to socialize and has a few friends (2 to be exact but they are 5), his speech is far better than ever before, he learned to read last year and is counting triple digit numbers so from a parents perspective we have jumped many of hurdles and are miles further than I would have dreamed of being.

Still 18 months after marriage I am having a hard time having discussions with Paul about Chandler's disability and maybe I am an over protective mother but I am frustrated because sometimes I feel as people want me to pretend that the PDD NOS isn't there... anyhow just frustrated about sometime feeling alone in trying to find ways to make Chandler feel as normal as possible - and to encourage age appropriate friendships.

Anyhow if interested about more info - I have copied info from a web page and pasted it along with the link below - any advise would be gratefully appreciated.

Information provided by: http://www.autismspeaks.org/navigating/pdd_nos.php
PDD-NOS
What it Is Pervasive Developmental Disorder -
Not Otherwise Specified, or PDD-NOS, for short, is a condition on the spectrum that has those with it exhibiting some, but not all, of the symptoms associated with classic autism. That can include difficulty socializing with others, repetitive behaviors, and heightened sensitivities to certain stimuli.

How it's similar to classic autism
Those with PDD-NOS behave like those with classic autism in many ways. First, they are all different (meaning one person with PDD-NOS doesn't act exactly like another; the same holds true for classic autism). When interacting with others, they may appear unemotional or unable to speak, they could have trouble holding eye contact, or they may have trouble transitioning quickly from one activity to the next.

How diagnosis differs
Those with PDD-NOS are different from others on the spectrum in one specific way: While they may exhibit some symptoms of those conditions, they don't fit the bill closely enough to fully satisfy all criteria set by the experts. Perhaps they started having difficulties at a much later age than others on the spectrum. (According to the National Dissemination Center for Children with Disabilities, they are often diagnosed between the ages of 3 and 4 years old.) Or they may have the same challenges — for example, they may be oversensitive to their surroundings — but not to the extreme that others on the spectrum do.

Consequently, those with PDD-NOS are sometimes thought to have a "milder" form of autism, though this may not be technically true. One symptom may be minor, while another may be worse.

What To Do About It Treatments
According to the Yale Developmental Disabilities Clinic, treating children with PDD-NOS could prove tricky: Sometimes, they may not get the help they need as quickly as those whose behavioral patterns are more clearly definable as autistic. Healthcare providers may not provide a diagnosis of PDD-NOS until after they've considered all the other "types" of autism; in short, they may arrive at their conclusion after essentially a process of elimination.As with other conditions, it takes a village of doctors, psychologists, teachers, therapists, and family members to arrive at an action plan that would work best for someone with PDD-NOS. A "one-size-fits-all" approach usually doesn't work: A multi-pronged regimen may be the most advisable. These treatments could include:
*Various behavioral regimens, including play therapy,
*Applied Behavior Analysis (ABA), sensory integration therapy, and more
*Medications, including anti-depressants
*Social skills training, which teaches children how to interact with their peers for
specific situations
*Alternative therapies such as martial arts therapy, wherein they flex their muscles literally and figuratively (they get stronger and learn how to function in a group setting); music therapy, which has kids learning how to communicate with the help of songs; or facilitated communication, in which children are taught to use computers or other equipment to make their thoughts known, especially if they have trouble expressing themselves verbally. (It supposedly is helpful to some children with PDD-NOS, says the National Dissemination Center for Children with Disabilities.)

How to Cope
Like other parents with children on the spectrum, you will face many challenges, starting with the incomprehension and insensitivity of others unfamiliar with your situation. They may think your child is "misbehaving" and, consequently, deem you a parent unable to "control" him. This may be especially true because PDD-NOS kids don't fit into the more easily identifiable forms of autism spectrum disorders. Ignorance can bring out the worst in others, and sometimes, when they're not privy to your child's issues (or simply don't understand them or won't accept the diagnosis, as happens in some families), they may be more judgmental.

That's why it's important to surround yourselves with friends, family members, teachers and healthcare providers whom you trust. Be sure that the lines of communication with and among them are clear; you will be relying on them through the many ups and downs of life with a PDD-NOS child.

If you're the primary caretaker (meaning you spend the most hours with your child), you'll need to make time for yourself, too. Caring for others can be draining, and you won't be able to give much if you don't replenish your own stores of energy and look after your physical, emotional and spiritual needs. Ask your child's healthcare providers for referrals to support groups so you can meet parents of other children on the spectrum; or go online — many parenting Web sites have bulletin boards for children with special needs, and Autism Speaks has online forums as well.

Structure is helpful for children on the spectrum, so take this into consideration when deciding what events to attend or places to go. Preparation is key, so let your child know what to expect before the situation takes place or they reach their destinations. Consistency also helps, so check in with your healthcare team before starting or stopping a regimen.

As children grow older and become more aware of the limitations that their condition has placed upon them, it may be helpful for them to receive counseling with a therapist trained in dealing with pervasive developmental disorders. As difficult as it is for parents to go through this journey, it's even harder for the children themselves who have to work through their own personal challenges and other people's ignorance as they make their way in the world.