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Jennifer's Story

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My daughter is 6 and has high functioning autism.  She was born early and very colicky.   I breast fed her until 7 months and yet she threw up almost every time. The doctor's watched her weight and she gained slowly.  They said it was probably just spit up and not to worry.    She hit the wall a few feet behind the couch and I had to feed her again.  She gained weight slowly because I fed her constantly.   She needed to be held at all times.  I carried her around everywhere until she started crawling.  Then she was into everything. 

She had incredible hearing and could hear the faintest sound in another room.  She was very energetic and happy or extremely upset as a baby.   She developed normally until somewhere between 21-24 months.  Then she seemed to withdraw.  She  started talking at 15 months but by 2, I could hardly hear one word in the middle of the babble.   I tried to redirect her to help her understand the sounds she made affected me.  She started ST at 2 and she made a lot of progress by 3.   She had a lot of sensory issues and also received OT.

When she was 3 my son was born.  He was also born early and had colic.   He seemed normal and we saw him as the tough chubby boy.  My daughter was placed in special ed for preschool and made good progress with ST.  But she memorized entire videos and conversations from school.  My son developed normally during his 1st year and started walking at 10 months.   He seemed to have no fear and constantly was getting injured.  I had been a little overprotective because of my daughter, but he seemed 10 times more accident prone. 

When my daughter was 4 she was diagnosed with autism and I became obsessed with finding something to help her.   At this point she did not have awareness sometimes and would climb over other children to get to a toy she wanted.  She had severe tantrums during transitions,   did not feel cold but screamed if her bath water was a little warm, sang constantly, was extremely picky and was severely thin, moved right to left with her trunk and neck, did puzzles upside down and in order from top to bottom, talked in 'panic words' over and over when upset, refused to have BMs and was not potty trained (fear of toilet, the flushing sound, etc,    had no fear (ran in front of cars), and had low muscle tone ('w' sitting and leaned into everyone). 

I read about all the therapy and interventions and decided to try the gfcf diet thinking it would be the cheapest.   She was a good candidate because she only liked dairy and bread products.  She became a monster when I took the milk and cheese away.   But in 3 days she made eye contact with me and said her first sentence.  She improved quickly and was like a different kid. 

At this time my son was starting to say his first words.   He had about 10 words by 16 months.  Then he started to regress and stopped talking.  He didn't use gestures well and was very frustrated.   I immediately requested for him to get tested.  It took until he was 21 months but then he was diagnosed with Regulatory Dysfunction, Impulsive Type.   He started ST an OT. 

My daughter started special ed kindergarten half time and a private school for socialization half time.  Her special ed class had a great teacher and all the kids were high functioning.   It was amazing to see the kids become friends.  I enrolled her in the private school associated with the preschool she had gone to.   They knew her diagnosis but accepted her because she passed their entrance exam. 

She had difficulty at first with her behavior and they had to learn to deal with her sensory issues, but over time she adjusted.   The kids in the class were very accepting of her outbursts and constipation issues.  She was finally potty trained but continued to have occasional constipation that left her in a diaper during the period after taking a ton of mineral oil.  

By the end of kindergarten she had a group of friends and was learning to cope with her OCD tendencies.  I spent that year on a biomedical rollercoaster and tried anti-yeast treatments, enzymes, and chelation.  I spent a lot on blood tests and a hair test to see the burden her body had taken from environmental toxins.   She tested off the charts on her minerals and had a high probability of mercury poisoning.  Since she had not had a vaccine since she was 18 months her blood work for mercury and the hair test did not find high levels of mercury.   It did find higher levels of bisthmus.  She could not have  chelation followed by a doctor due to this and I spent more months researching how to do it myself with the help of autism advocates and parents.  

She made some progress in the beginning but then had yeast overgrowth I could not control.  She started to regress and we stopped the chelation.   She was not healed enough to endure chelation.  We switched to focusing just on supplementation.  I spent hours everyday researching and became a bit obsessed.  

At the time my son was doing well with therapy and at daycare (except with the aggression that I attributed to his age.)  I never tried the gfcf diet on him because he did not fit the profile and did not seem to be on the spectrum. 

This past March I was diagnosed with Fibromyalgia and became unable to work over the summer.   I was home with my son full time for a month until I was able to get him into a program for children with an IEP.  He started in October and had trouble adjusting.   He was aggressive and targeted weak children to take their toys.  I worked closely with his therapists and became actively involved in his therapy. 

My daughter started 1st grade at the private school and has been doing well.   She continues to have some trouble with paying attention and requires extra cues from the teacher.  We picked this school as opposed to the IEP plan of regular ed with a para.  I thought she would become overly dependent. 

When I became disabled we were unable to afford the tuition.   The community assisted with the tuition and the school gave us a discount.  I was shocked by the support and the commitment the school made to my daughter. 

My son turned 3 this month and the district completed their assessment.  The Regional Center also did a re-evaluation of his diagnosis since Regulatory Dysfunction is a toddler diagnosis.   He was diagnosed with PDD NOS.  The district is poor and the assessment was short.   They stated that he did not require a classroom para because he is such high level.  I am currently fighting to get him services. 

I have started him on the gfcf diet with enzymes also.   I do not expect the same progress with him but will give it 3 months to see.  He did not have the withdrawal that my daughter had and is compliant with the substitutions.   He used to love all food but has become more picky lately and is quite skinny now.  His main issues are OCD tendencies, hyperactive, rigidity, sensory issues, and stereotyped play.

My children's behavior is not severe as a lot of children on the spectrum, but their behavior is worse at home.   Most people who know us think the kids are not that bad.  When they were babies our friends and families tolerated a lot.  My daughter's behavior has occasionally been very inappropriate around people but she can control herself for longer now.   She is odd and more childish than our friends' children.  My son is still little and a boy so they tolerate him too. 

Our family is always saying that we need to relax and stop watching the kids like hawks.  They do not understand that I need to step in before my daughter has a breakdown or that my son will fall down the stairs or walk out to the street.  At home their behavior is the worst and weekends are long.  I give my daughter a lot of time to wind down after school.   She needs to space out on the computer or in front of the tv to regroup.  We have a special non verbal communication.  My son is still young and although he can speak, he resorts to screaming when upset. 

I have recently also been diagnosed with Rheumatoid arthritis and asthma.  I have been trying to take care of myself as well as my children.   This is hard for me and I neglected myself for years.  Trying to balance everything is a daily battle.  My husband works a lot and most of the week I am alone.  We have hardly had any baby sitters except for my parents and letting go is hard for us.  My mom has occasionally said that others are capable of watching our children.  They are much easier than years ago but still I feel that others are not capable...But during a lucid moment I realize that I am not at my best either.

I need to learn to accept help and watch my OCD tendencies so that I don't try to be supermom.   I want to help my children if they are not healthy but I do not want to turn them into someone they are not.