Tx Mom - PDD-NOS teen daughter

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I'm just here to introduce myself and start getting to know people.

A little background:

Heather was a preemie twin born at the end of the 2nd trimester. She underwent major surgery at three days old and has massive scar tissue on her upper torso and across her left shoulder blade. She spent her first weeks in pure oxygen due to developmental problems with her lungs and heart; this caused her eyes to deteriorate and she is legally blind ( 20/20 vision at 14in. complete lack of vision at 3ft.) She was also born with non-progressive cerebral palsy which has left her with lingering stiffness in her arms/legs/fingers. Heather's twin died after 7 days when his heart completely shut down. Doctors said that Heather would not live to see five years old.

Heather is now 19.

I must state up front that I am not Heather's birth mother. My husband and his first wife separated within three months after Heather was born. Heather lived with her birth-mother until she was four years old, so our accounts of how Heather progressed in her early years are strictly hearsay. As far as we have been told, her birth mother simply thought that Heather was a "very quiet child". Her delayed development was all attributed to her birth complications. As far as my husband has told me, the birth mother was not very attentive to Heather's development; we have no way of knowing how early her symptoms started to display.

Luckily for us, Heather's mother threw in the towel just after Heather turned four. My husband got full custody; Heather's mother disappeared and has not been seen or heard from since.

Doctor's continued to attribute any and all developmental problems to Heather's birth condition; however, upon being enrolled in kindergarten a GOD-SEND of a teacher noticed irregular speech patterns, problems with social interactions, inability to imaginatively play, etc. Heather's teacher recommended us seeing the school counselor, who immediately referred us to a specialist. Heather was diagnosed PDD-NOS just after her 5th birthday.

Working with Heather through the years has been a constant struggle; due to her visual impairment, many of the teaching tools and educational aids most used for other Autism spectrum children have been ineffective.
The visual impairment however has been a blessing in disguise. Due to Heather's legal blindness we have never been turned down by any state agency or government program. Being blind is about as cut-and-tried "disabled" as you can get. It has ensured that Heather will continue to receive support and assistance for her entire life.

I won't go into detail on how many time I thought I had "tried everything!!" or was "at the end of my rope!!" because I'm sure all you other parents out there know those feelings all too well. I will however share some of our greatest successes with you all.


First and foremost, Heather has far outlived that first diagnoses of "Won't make it past five." Heather will always be frail and of slight build (she's capped out at 5ft 2 and about 90lbs), and she will always have difficulty with fine motor control of her hands and stiffness in her arms and legs. However, other than those small details, her physical health is fantastic.

Heather has been on grade level every year that she's been in school. She attended classes without needing an on-hand aide, and she graduated last year right on time. Mind you she's terrible at math and has no concept or understanding of time or money, but many other students have learning disabilities when it comes to math.

Heather is slightly socially awkward, but almost everyone that meets her comes away talking about what a "charming young lady" that she is. She is polite and energetic, and loves to meet new people. Point-in-case, she's a bit too friendly for comfort sometimes.


Our next big hurdle is transitioning into adult life after high school. Developmentally Heather is six years behind; that means that for all intents and purposes I have a 13-year-old that just finished public school. Heather is not yet mature enough to be left on her own at college, nor is she remotely ready to live on her own as an adult. On the other hand, her father works full time and I'm about to return to school myself.

I'm so glad to have stumbled across this website and this forum; I'm in desperate need (as always) of new ideas and new things to try. Life with an autistic kiddo is never easy; but she was never a moody teen before!! 90% of the time she's a great kid, but that other 5% of the time drives me halfway to insanity and back again.

Welcome to Wrong Planet!

Hey. You might enjoy the parents forum.

I've been browsing around there quite a bit so far!

Although I've noticed that most of the threads have to do with children/kiddos that are MUCH younger than my own daughter....

Welcome to WP from a fellow Texan!

Welcome to WP,
Good for you taking it on and caring. It is a different set of challenges but NT girls also go temporarily insane at that age, so if they are a girl, there is no dodging that bullet.

You are getting to a difficult transistion period, when a lot of the pre-planned structure of childhood ends. Don't know what you have in your area, but the best I have seen is programs for assisted living for adults with disabilities. They help set up living arrangements, which could be their own appartment or living in a appartment complex for people with disabilities. They help them get a job, drive person back and forth to work, etc. They also have social program, like organized weekend day trips. I have seen good programs in Pennsylvannia and North Dakota. So maybe that is something you can look into where you live.

Oh don't I know it!! ! I remember that particular set of obstacles very clearly myself; my mother and I were constantly having shouting matches, I despised my sister with every fiber of my being, and my dad might as well have been on a different planet.

Luckily my DD isn't too interested in boys or romance (other than fantasizing about Johnny Depp, lol); we've already had the sex talk and she was very open and receptive (while slightly embarrassed). So far she seems to just have developed the drama-queen streak. She can get pretty sassy, but she's VERY tame compared to what most other tweens and early teens put their parents through. She's an angel compared to my tween behavior!

I just have to keep telling myself that when she's pouting and hiding behind her hair, or ignoring our questions/.refusing to answer/ slacking at her daily routine /hiding books under her bed / fussing around on her phone....etc.