I used to think I knew it all.
All that was needed was consistency, positive attention, the right reinforcement schedule and the proper interventions.
TEACCH, PECS, ABA, Social stories, Floortime, ect….
I had no clue.
No sleep, constant worrying, crippling anxiety and the overwhelming fear that would take over myself, my marriage, my friendships and my role as a mom.
A mom of twin boys who have not been diagnosed formally but who exhibit all the characteristics of…PDD-NOS.
What is PDD?
“Pervasive Developmental Disorders. To begin with, there is not a diagnosis of PDD. A service provider should not ever diagnosis your child with PDD. Why? Because there is not a singular diagnosis of PDD. Notice what PDD stands for: Pervasive Developmental Disorders. It is a plural umbrella term for several disorders and syndromes. These are considered to be mental and/or behavioral disorders that may or may not have biological basis or causes. These disorders are defined in two places. As with many things, there is the American version and the rest of the world version. The American version is defined in the Diagnostic and Statistical Manual of Mental Disorders (DSM) a diagnostic manual printed by the American Psychiatric Association (APA). This manual is continually revised and the latest revision is revision 4 (DSM-IV). The other version is the World Health Organization’s (WHO) International Statistical Classification of Diseases and Related Health Problems (10th Revision), also know as ICD-10. Specifically it is Chapter V that we deal with: The ICD-10 Classification of Mental and Behavioural Disorders. And of Chapter V, there are three books, Clinical Descriptions and Diagnostic Guidelines, Diagnostic Criteria for Research, and Primary Care Version. The classification codes for PDD come from the first book of Chapter V, Clinical Descriptions and Diagnostic Guidelines.”
PDDNOS from the professional’s point of view…
Usually after reading and listening to parents and school staff’s observations and encounters, a developmental medicine team will compile some scores, look into their mental health bible, The DSM, and diagnose the child.
Prognosis: With the right interventions, the child should reach his/her maximum potential. But nothing is sure. Ever.
Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) is one of the autism spectrum disorders and is used to describe individuals who do not fully meet the criteria for autistic disorder or Asperger syndrome.
PDD-NOS may be thought of as “subthreshold autism,” or a diagnosis one can give a person who has “atypical symptomatology.” 2 In other words, when someone has autistic characteristics but some of their symptoms are mild, or they have symptoms in one area (like social deficits), but none in another key area (like restricted, repetitive behaviors), they may be given the PDD-NOS label.”
PDD-NOS from the outside world’s perspective
*”He/she will get there! Don’t be (to the parent) so paranoid!”
*”My boy (because odds are 1:4…It is a boy) started talking at 5! Look at him now! He is the star of the hockey team and is headed to college with a full scholarship!”
*”Have you seen her child? He/she screams at the top of the hat, can’t listen and won’t eat anything but crunchy, salty, sweet food! What a brat!!”
*”Has she had his/her hearing checked? They probably feed him way too much sugar!”
*”Can you believe he/she isn’t talking yet and OMG he/she bit my child during playgroup! Something is wrong!”
*” Wow…Don’t know how they do it..WHAT A NIGHTMARE!”
PDDNOS from a parent’s perspective…Not just ANY parent…One that once dedicated herself to…Autism.
* “Why aren’t they talking yet? I have been signing, reading and singing to them since they were born!”
* “Something isn’t right…Maybe they are visual? Time for PECS, social stories and task analysis”
* “Still not much success…Time for some serious positive reinforcement charts”
* ” I am so tired…I can’t go on like this without sleep anymore…They are 4 and a half…Time for melatonin”
* “Is it the gluten? The casein? The sugar? Will check out some ideas online…”
* SO overwhelmed with the Gluten/Casein free diet…And can’t afford it”
* I should have researched the vaccinations more…It’s all my fault. I should have NEVER vaccinated them”
* “This isn’t fair…So angry at Life”
* “Compare, compare, compare…To EVERYONE’S children. Even the crack addicts”
* ” Might as well do the bedtime, the baths and all the outings…Nobody else can handle it…I am the only one who can identify the ABC’S and deal with it the best I know how”
* “Well it’s official I am the screaming mom who looks like Mommy Dearest at the grocery store, the playground and anywhere”
* ” I am such a horrible mom. Not only do I used to LOVE my clients and their small success everyday…Now all I can see are the failures the boys are experiencing”
* “I am so lonely. I have alienated everyone by not answering the phone in the last almost 5 years because it is just too…painful”
“How was your day? Silence. Did you have fun? Silence. How are you feeling? Mummy…You know when Diesel and Thomas go fast on the track? That’s funny!”
Mummy in front of them: “They did! What else did they do?”
Mummy in her head: “I CAN’T HEAR ANYMORE ABOUT THOMAS THE TRAIN, LIGHTING MCQUEEN OR STAR WARS!!!! YOU AREN’T A TRAIN, A CAR OR A ROBOT!!!TALK TO ME ABOUT YOU!! WHAT YOU DID, WHAT YOU WANT TO DO, WHAT YOU ARE THINKING!!!”
* 3 years of “No running! No touching the tv! No playing int he toilet! No yelling! Come here! NOW!!”
* “Will it ever get better? Will we feel like we are mourning each milestone as others celebrate them?”
This is what I now know for sure.
Not knowing can be worse than knowing at times…
It can feel like a never ending swim in the cold, torrid and unpredictable ocean. You know you can always float but it’s not enough..You have to push harder and harder until you can get to the other side…And maybe just maybe you will be able to touch the bottom…And not sink.
Parents of children with classical and severe Autism would LOVE to trade places with me.
I don’t have to worry about my children wearing a helmet to prevent serious injuries.
I don’t have to worry about never hearing “I love you mummy”. I hear it everyday.
I don’t have to worry about my sons wearing briefs for the rest of their lives, they were potty trained at 3 and a half.
I don’t have to ever deal with the most heart wrenching silence of all : Your child’s.
Parents of children who are developing typically have their own struggles. Some challenging more than others.
Parents, like us, of children who just can’t seem to receive the proper diagnosis never stop worrying or comparing.
Hoping that with the right interventions (diet, behavioral, sensory, other) our children will achieve ALL that they CAN, in their own time.
Which should be the pediatrician’s, the multi-disiplinary team and the parents ONLY goals.
P.S. This is what PDD-NOS can also look like…Most people would just call it: Happiness. Period.”
Elissa is the proud but sometimes tired-overwhelmed-where has my patience gone to Logan and Lukas who will be turning 5 in May. You can keep up with Elissa and her family at DomesticEngineer2Twins.