Autism Spectrum Disorders: Please Tell Me What Is Wrong With My Son!
Missing Pieces (Autism Song)
Personal Journey through Autism: Beginning
I have a child with Autism. My son was diagnosed late; age 6. It took three years to finally get a diagnosis. The Army screened us to go overseas and it’s the Army that finally diagnosed him.
The school system in Texas told me it was neglectful parenting, California state’s he just had a speech delay. An ER doctor thought it possible it was PDD-NOS, maybe even Asperger's Syndrome; and one time I actually got a shoulder shrug and "I Don't Know."
I was bounced around from specialist to a therapist; therapist to support group after support group; support group back to clinical psychology.
How could it have been so difficult to tell me what was wrong with my son? How hard would it have been to tell me how to help him?
When I first found out I was pregnant; two days after the towers fell on September 11th, I collapsed into a ball of hysterical tears of joy. We had been trying since my first born was nine months old with no result. Living on a naval air base in Central California with the picture perfect first born son; nothing but the same was expected of another child.
My first born son was very advanced and exceptionally bright. He walked holding onto the table at only 4 months old; walked at 9 months, never used a pacifier, pulled himself off the bottle onto a cup at 9 months; and his first sentence was at barely a year old, "Mommy, more apple juice please." He was alert, easy going, and loveable. I just couldn't wait to do it all over again.
How would it be possible not to produce another such perfect child? I certainly must have done "everything right" in those first couple of years with unlimited support from the Marine Corps and husband.
Andrew joined us on May 13, 2002; right after Mother's Day and not long after my oldest turned 3 years old. Labor was virtually painless, no medication administered during delivery, and lasted 45 minutes start to finish. We were also in a brand new state of the art Navy Hospital with everything we could ever need at our fingertips. He was 7lbs, 6oz and 19 inches long.
Perfect and healthy.
Our family photo was taken directly after giving birth to be plastered on every brochure worldwide introducing the new Navy medical facilities. My head nurse enjoyed us so much that she sat doing her paperwork and her charts at my bedside. Everything was already so perfect.
The first two weeks at home were exhausting, but what new mother hasn't felt that way?
My husband was a huge help on his ten day paternity leave that the Marine's give new father's. Andrew was still normal at his 2 week checkup. I was breastfeeding as I did my first born and expected to wake up more then a bottle fed baby; but Andrew was sleeping no longer then 45 minutes at a time. No matter how much he indulge on breast milk, he was guaranteed to wake up that often. I took to sleeping on the couch with him on my chest or bouncing him in his bouncer. I got so I could be fast asleep and still bouncing him with my foot on the base of the bouncer.
After a month I was visiting my mother in Southern California and Andrew was up so often at night she would come out to help me. Andrew would cry so often and for no apparent reason we eventually switched him over to formula with the idea my breast milk wasn't doing enough for him. The crying did cease to be that often but he still wouldn't sleep longer then 45 min.
I suppose I got used to him being more "difficult" then I thought at first he would be. I got a job when he was only 2 months old and had a wonderful second caregiver for the boys. I adjusted to lack of sleep, managed to stay out of postpartum depression, and lived and loved my life. I still thought of us as the "perfect" family That had two perfect sons.
Finally Getting Services
"Something is wrong with my son!": Suspecting Autism
In the life of a Marine family we lived by certain philosophies and one was "Adapt and Overcome". So, in many ways, that is just what I did and I got used to having a "difficult" child and viewed us as that perfect family.
I returned to work after Andrew was two months old and we had a great caregiver for the boys; a wife of a good friend in the squadron my husband worked with. All our friends were always helping us and this time was no different. She watched them no matter if it was day, night, overnight, weekend or holiday. Truthfully, I went back to work part time, to just get a break from Andrew.
My husband didn't have the patience he had had with our oldest so he wasn't helping all that much and it just wore me out. Working was something I had that made me have an identity other than my kids and SGT wife. It quickly went up to full time and many back to backs or inventory's all night and within six months I was the Assistant Store Director working well over forty hours a week. We didn't need the money at this time but I loved the feeling of independence I had outside my marriage.
I got used to only getting two hours of sleep at night and my time away from work was at home and going to school full time online.
I soon noticed that my son's developmental milestones were barely met in the normal range but the doctor's never seemed to worry about it. He was about a year old and I found out I was pregnant with our daughter. His vocabulary had only consisted of two words and soon they disappeared and he didn't talk anymore.
He stopped gesturing for what he wanted and screamed all the time. The doctors chalked it up to jealousy of a third baby coming; another said that it was the stress of an unexpected pregnancy had on my marriage and an affair of my husband's that he felt and reacted to.
I didn't believe any of it but I didn't think it was serious. Some children just grow up in a same household very differently then their siblings.
ANDREW'S DEVELOPMENTAL MILESTONES:
- ROLLED OVER - 4 MONTHS
- SAT UP ASSISTED - 7 MONTHS
- CRAWLED - 8 MONTHS
- STOOD UP ASSISTED - 11 MONTHS
- FIRST STEPS - 12 MONTHS
- FIRST USED SPOON - 12 MONTHS
- FIRST WORD - PAPA - 12 MONTHS
- BRUSHED TEETH ASSISTED - UNWILLINGLY 15 MONTHS
- CLAPPED - 13 MONTHS
- TOILET TRAINED - FIVE AND A HALF YEARS OLD
- SANG FIRST SONG - 3 YEARS OLD
- PEEK A BOO - 9 MONTHS OLD
Andrew refused baby food and we were forced to bottle feed him formula until well after 15 months old. He refused almost every food and all pasta had to be plain, macaroni and cheese and chicken nuggets were all he ate.
To get him to drink milk we had to flavor it and also substitute with Pediasure twice a day. He refused water and broke out in hives if he had anything with Red6 in it. Chicken Nuggets had to be from McDonald's or he wouldn't eat them and making them at home and putting them in a McDonald's container didn't work. Andrew knew the difference.
By 18 months his tantrums started. At first they were self injurious. He would scream his head off, go stiff as a board and throw himself straight backwards. He would run around the house screaming his head off and nothing would quiet him down; he just stopped when he tired out and literally passed out in a dead sleep.
The doctor's still didn't seem concerned but I was worried and exhausted. By the time the baby came; Andrew was ignoring me. He seemed angry with me for going to the hospital to have our daughter and one day I barely caught him in time from dumping her bassinet over with her in it.
Once he laid directly on top of her and tried to suffocate her to stop the crying. By the time we moved to Northern CA when she was a month old, Andrew was throwing violent tantrums and scratching, biting, and hitting not just himself but me as well. He even stood five feet off the floor on a dehumidifier and dove head first into solid floors. He just got worse and worse and nothing we tried would help.
In Northern California we lived near a big extended family on my husband's side and most of the family judged our son's behavior on bad parenting on my part. They called Andrew a "spoiled brat" and made comments about me frequently. Never did my husband stand up for me or speak against the family mostly due to the Hispanic culture. He ignored most of it and didn't believe anything was really wrong with our son. He was at wit's end; however, with Andrew's behavior and resorted to spanking him.
All that did was make the tantrums more terrifying and Andrew more hysterical and withdrawn from anyone but myself. At family gatherings if I wasn't there and my husband was working; when they had enough of Andrew they would just put him in a bedroom alone and let him scream and cry by himself. I didn't know most of what went on until later and by then we separated ourselves for the most part and watched as our marriage crumbled further away. A divorce almost happened but my husband, in a desperate attempt to keep our family together; joined the Army.
When Andrew turned three years old and had his well child exam; my spouse was at AIT for three months. I was still working and going to school full time and had kicked our cousins out of the house for locking Andrew in the room and letting him bang his head bloody and never checking on him.
We didn't trust anyone but one of his uncle's and I tried to stay home as much as I could. The doctor's appointment started off rocky with me collapsing into a heap of tears and hysterics trying to tell the doctor something was indeed wrong with my son and I needed someone to listen to me finally. She did; and forever Dr Dody will be in my heart for that. She ran blood-work that came back normal and then a referral to an audiologist that came back inconclusive. She set up an in home evaluation for speech that we never heard back from after his evaluation.
I remember explaining in detail to Dr Dody the hours I would spend rocking Andrew in a bear hug in an attempt to stop him from clawing at his face and biting his hands; trying to keep him from hurting me and the whole time he was in uncontrollable hysterics, I was crying too. That I would rock him anywhere from an hour to six hours begging him to tell me what was wrong and how to fix it.
I confided in Dr Dody that at night I would lay next to him and stroke his hair for hours because it kept him asleep and I wouldn't be thinking of when he grew up and went to college or got married; but what it would be like when his fits stopped.
I ceased to have much hope or many dreams further then being able to go a day without being bit or scratched.
Now that we were finally under military health insurance again; it seemed more people were willing to help us. Not that they were really all that helpful.
Dr Dody did extensive research on her own time into Autism and provided me with a lot of information. She asked me what my gut instinct was and I didn't hesitate; though I don't know where the instinct came from. "Autism" is what I told her.
I then began to have a panic attack and as I sat there in her office, head between my knees and Dr Dody getting somebody to administer xanax to me; the room felt like it swallowed me up. I didn't know that one word would have such an effect on me. I was an educated person and of all subjects, abnormal psychology. I knew there was much worse that we could go through or be diagnosed with. Autism wasn't something I knew a lot about but I did know it didn't go away and there was no way to cure it.
No magic pill to make my son normal.
No guarantee my son would ever say "I love you".
I had a nephew with Autism; but it wasn't supposed to happen to me; there wasn't a chance in this world I was going to be a good mother to a child with such a disability. Heck, I decided against teaching special needs children because I felt sorry for children with Down's Syndrome and I had no patience for children that were even a little slower than average.
My own first born son, advanced as he was, it drove me nuts and I had no patience for teaching him something new and him not understanding. I would always make his father do his homework with him. What was I saying? Autism? Us?
Dr Dody agreed with this suggestion and told me that 80 percent of the parents she has had experience with that ended up with Autism diagnosis; the mother's diagnosed it. The mothers came in and said listen to me..my son is Autistic. She said that with her limited experience the mother's seemed to be more of an expert than the health professionals. She told me that if nothing else we would work with Andrew one step at a time and see us three times a week.
On my own, three kids and no help, husband across the country at an Army training school...working and going to school full time and now this?
I did it though; dropped ten hours a week at work, worked only during the day and three days a week off. I took him to every appointment. I was sent to an Autism and ADHD specialist that said he wasn't Autistic but maybe had Sensory issues.
This was said after ten minutes of watching Andrew play. How can any professional decide in ten minutes a child does or does not have a diagnosis?
Then a child behavioral specialist mentioned Autism but said that since we were moving to Texas soon there was no point in doing anything. I even got an "I don't know" and shrug of shoulders.
Not one professional had the same opinion.
Not one of them put in for evaluations and assessments or testing. I never felt so frustrated in all my life.
Dr Dody and I were able to get him to bite a blanket instead of himself if he was upset. We worked on how to get eye contact and what to say and not to say. We made very little progress but it was the first time I felt that anything was being accomplished.
The doctor and I were, on no better terms, assuming Autism. An educated assumption thus trying to provide some sort of therapy in the limited capacity we had; I sat on my front porch and cried for hours on the phone with my husband.
He didn't want to believe anything was wrong with our son and he blamed me for trying to find a disorder to place on him for an easy way out. I was so hurt and angry. I felt defeated. If my own husband couldn't grasp onto the diagnosis possibility how in the world would I ever have enough of a support system to help our son?
I had no idea where to go from that point and nothing I said helped my husband get out of his denial.
It was just me yet again; just me from here on out and I was somehow going to have to become all he needed in one person. Super mom and Super dad and Autism Extraordinaire. My only hope was Texas would offer us some answers.
- CDC - Facts, Autism Spectrum Disorders - NCBDDD
Autism Spectrum Disorders (ASDs) are a group of developmental disabilities that can cause significant social, communication and behavioral challenges. CDC is working to find out how many children have ASDs, discover the risk factors, and raise awaren
This content reflects the personal opinions of the author. It is accurate and true to the best of the author’s knowledge and should not be substituted for impartial fact or advice in legal, political, or personal matters.
© 2010 Abby Rourk