Hi! I'm new. I have questions and don't know where to start

[Guest guest]

I'm Amy. I'm a mother of 4 ages 6,4,2, & 1. We live in the Dallas area. The 4.5

yr. old is my child who is on the spectrum. He has been diagnosed PDD-NOS and

will be reevaluated for Autism after his 5th bday. We did our initial testing

at Our Children's House Baylor when he nearly 3, but were very disappointed in

the inconsistencies in his report and lack of concrete " diagnosis " or feedback.

They also tried signing us up for therapies before they'd even evaluated him and

couldn't even tell me why or what they'd be working on. Felt more like I was

being solicted w/a slick sales package than being offered help for my child.

I walked away discouraged and felt like I'd paid a lot of money for absolutely

nothing. I waited and had him retested through the school district. So far the

only testing we've done has been through our district. He was enrolled in the

PPCD program and will go again this year. I'm pleased with the progress he has

made in language and social skills, but I am disppointed in that I haven't been

given any parental support or direction on what to do to make day to day life a

little easier and more manageable. The rough spots lately have been VERY rough.

I feel so alone, frustrated, and like a failure as a mother.

We recently switched pediatricians. I am very pleased with our new pedi and

disappointed that I didn't make the move when I first started having questions.

Our former ped. wasn't helpful at all. I hate to think of the time wasted.

Some red flag events that didn't seem to register on the ped's radar that

concerned me more: Noah had a horrible vaccine reaction after receiving the

DTaP at his 18 mo. well check. (Nearly 6 hrs. of screaming, writhing, bashing

his head against the wall starting w/in 45 mins of receiving the injection. I

was told it was NOT a vax reaction, must be a temper tantrum.) He had Pica and

we discovered that his iron stores were completely depleted sometime after that.

He's had chronic issues w/diarrhea and yeast infections. He had delays in

language and communication skills. I requested a test for heavy metals, he told

me the only ones available were for iron and lead. I had been delaying Noah's

vaxes and after his reaction I stopped them. (I could kick myself bcwhen he had

his 1st DTaP at 4 month he developed horrible reflux. I can't help but wonder

if that was my first indicator that something was wrong.) The pedi told me,

nearly 2 yrs later, that I would have to start vaxing him or find a new ped. I

finally switched.

Our new pedi ordered Nutraeval, allergy testing, and stool testing. I just

finished reviewing the reports and am shocked to see that my son's Mercury level

is toxic. His copper is high. His Zinc is extremely low. The reports are very

detailed and revealing. We meet w/the ped. on the 1st to review and come up

with our plan of action.

AT our first appt. w/her, she recommended brain balance through Brainworx. Is

anyone familiar with brain balance and have feedback?

My biggest questions are what to do next.

Do we need to see a someone in psych or a developmental pedi or a behavior

specialist?

I think we have FINALLY mastered using the toilet. That used to be a big issue.

Now it's mostly behavior issues that I need help with handling. Behavior and

eating are probably the biggest source of frustration. I cannot get him to eat

many foods or take supplements. I don't know how to get more nutrition into him.

I would love suggestions. The behaviors...some I just worry about social

acceptance bc of his repetitive speech,not understanding or reading social cues

etc. And the most frustrating for me right now is that we are in a patch of

aggression. Sometimes this is more uncontrollable than other. The aggression

is aimed toward his siblings. They start in play, but he crosses the line btwn

playful and hurtful. I can't tell is he doesn't recognize that he is hurting

them or if it is intentional. It's like he gets carried away and can't calm

himself down. Redirection, isolation, natural consequences etc. seem to have

little effect in calming him and getting the behaviors to stop the past few

days. It goes in cycles. It's not always like this, other times I can redirect

him or whatever, but then we hit these patches where nothing seems to register.

I worry about him hurting someone, especially if the behaviors were to spill

over into playing with friends. So far that has never been an issue. I tend to

avoid social situations so that I won't have to worry about it. One day, he

will have to be out in the world w/o me there to monitor and referee so I want

to give him the tools he needs to self-monitor. Does that make sense? I just

feel like I've used all the tricks I have and I need more tools. Where do I go

to find it? And of course money is a limitation...we have private insurance but

not a pool to draw from to pay our 20% when it seems like EVERYTHING has a huge

price tag. *sigh*

Thank you for reading, if you actually made it through all of this.

I would love to know if there are any other parents out in the DAllas/far North

Dallas who might have some local tips. I would love to find a support group of

sorts in this area. I just feel so alone while trying to navigate through this.

Thank you!

Amy