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When Autism Strikes; Our Life With An Autistic Child

My post yesterday, when your child has autism was a preparation for today’s post. A post that is personal and about our struggles with Autism.

Our daughter Danica was born at 37 weeks as a beautiful flawless baby girl. An absolutely perfect infant. We were proud parents of our 3rd child.

Danica developed on schedule and was blooming into a toddler. She was walking, talking and doing everything most 2 year old kids do. On her 2nd birthday her physician told us she needed a series of vaccines to keep her on schedule. As most parents, we listened to our physician and consented. She was given several shots and we left.

This is when our nightmare started. That evening Danica developed an extremely high fever of 103°. As a concerned parent I contacted her physician and expressed concerns of her high fever. I was told it was ok, that her body was doing it’s job. As the evening went on the fever spiked to 104°.

I knew something was wrong and took her to the hospital. The hospital staff ensured me it was just a slight reaction to the shots she had earlier in the day and sent us home with Motrin.

I administered Motrin every 4-6 hours as I was told, yet the fever would not drop below 102°. I contacted her doctor the following day and was told I was being over protective and she was fine. Give it a day or two and call back if the fever did not go away.

On day three my little girl still had a high fever that just would not break and at that point would not even drop. Her fever raised to 104.5°. She was still lethargic and would not eat. I was forcing fluid into her with a syringe. Panicking, I took her to another hospital.

The hospital infused her with an IV of fluids, administered Motrin and sent us home.

Day four, the fever had dropped just a tad and she was still sleeping all day. She had nothing to eat the last 4 days and I was worried sick. I could not sleep and checked on her every 15 minutes or so.

Day five finally rolled around and the fever was gone. Danica woke up and seemed to be back to herself. All except one thing- she would not talk. She was pointing to things she wanted and mumbling baby talk.

What the hell is going on with my child? She’d been sick for 5 days and now won’t talk. My mother’s instinct told me something was seriously wrong. I did not know where to turn and took her to a children’s hospital. That hospital ensured me she was ok that the fever was due to her body’s reaction to the shots.

A few days past and she was still not acting like herself. She was highly irritated, did not want me to love on her at all, would not look at me when I spoke to her, was freaking out at the sound of motorcycles or loud noises, and would not talk anything other than baby talk.

Back to her pediatrician we went. He said my child was fine but had a developmental delay. I clearly remember asking him how in the world someone can back-track. Two weeks ago my child was talking and communicating with us and all of a sudden has a developmental delay? I called bullshit immediately. The doctor was not sure how to reply, as he could tell I was angry. This made no sense to me at all. You don’t just forget how to talk, you don’t just lose info you have already learned! Two weeks ago my kid was normal and now you tell me she has a delay.

I remember leaving his office depressed and at a loss for words. I was not dealing with a sudden onset of a developmental delay. Something was wrong with my child and I was going to get to the bottom of it- some how.

I hit the internet searching for symptoms she was suffering with. I must have visited 100 websites in two days. Printing everything that seemed like a logical explanation.

During one of my searches I stumbled upon the  Mayo Clinic website. After reading an article on Autism and the signs, I was pretty sure that is what we were dealing with. However, I didn’t understand how these symptoms just came about within a two week period of time. Danica had been a normal child until two weeks ago and now it was like we had a new child.

The Mayo Clinic website pointed out several symptoms- several that explained my daughter to a t. (the red highlighted applied to her)

Social skills

  • Fails to respond to his or her name
  • Has poor eye contact
  • Appears not to hear you at times
  • Resists cuddling and holding
  • Appears unaware of others’ feelings
  • Seems to prefer playing alone — retreats into his or her “own world”

Language

  • Starts talking later than age 2, and has other developmental delays by 30 months
  • Loses previously acquired ability to say words or sentences
  • Doesn’t make eye contact when making requests
  • Speaks with an abnormal tone or rhythm — may use a singsong voice or robot-like speech
  • Can’t start a conversation or keep one going
  • May repeat words or phrases verbatim, but doesn’t understand how to use them

Behavior

  • Performs repetitive movements, such as rocking, spinning or hand-flapping
  • Develops specific routines or rituals
  • Becomes disturbed at the slightest change in routines or rituals
  • Moves constantly
  • May be fascinated by parts of an object, such as the spinning wheels of a toy car
  • May be unusually sensitive to light, sound and touch and yet oblivious to pain

Could my child have Autism? How is it possible for her to wake up one day changed? I didn’t know but was determined to find out.

I contacted her doctor once again for an appointment. I showed him everything I printed from the Mayo Clinic website and other websites with everything that was similar to her behavior highlighted.

The doctor immediately told me everything  I had was misinformation. My daughter was misbehaving and that was all it was. I looked that doctor in his eyes and quickly told him that was not correct and if he could not help me find out what was wrong, I’d find a doctor that could. I don’t have a PHD, but damn it I know when my kids are misbehaving and when something is wrong.

After 6 months of doctor visits to many doctors, finally one took the time to listen to me and my child (what jabber she would say). After many tests including an MRI and CT scan, she told me Danica has suffered from Encephalitis,  irritation and swelling (inflammation) of the brain. Encephalitis is most often caused by a viral infection with an allergic reaction to vaccinations also being on the list of causes.

FINALLY, this makes complete sense to me. Danica was put on medication for two weeks. After the medications were taken, she had a follow up visit. The doctor looked her over with a fine comb, did lots of blood work and tests. She looked at me and said “I’m not sure there is an easy way to put this but I think Danica has Autism, I’d like to refer to her a psychiatrist for further testing”.

At this point Danica was three years old. Still not talking, still no eye contact, preferred to be alone in her room and was suffering with sensory issues. A year later (after this ordeal started) and we had made no progress. We still could not do a lot away from the house, because Danica would often have severe rages. It was embarrassing to me and I could not stand to see people stare at my child. It was easier for me to do things with the kids at the house, even though it was not fair to the other kids. I’d often have daddy take the other kids out and Danica and I would do things at home.

After doing some physiological testing her new doctors did in fact diagnose Danica with “High Functioning Autism”. Great! We know what the problem is, so how do we fix it? I was saddened to learn it would not just go away, that Danica would be affected by this for the rest of her life. There as nothing I could do as her mom to make this go away.

We were immediately offered speech therapy, occupational therapy and her doctor wanted to see her twice a week for therapy sessions.The next several months we spent a lot of time working with therapists and physiologists trying to figure out an action plan and executing the plan.

Within about 8 months I could see a slight improvement in Danica. She was allowing me to hug her again- I’d wrap my arms around her and cry while I rubbed her long blond hair. I missed my little girl and wanted nothing but to fix the issues she was suffering with. She still played with her fingers, did not look at anyone when they spoke to her, about had a panic attack when it was bath time, became very nervous of sudden noise and stayed to herself.

When Danica was 3 1/2 her doctors suggested we try putting her on medication. I immediately refused, I did not want my child drugged. No Way!

As the months went by Danica started to develop OCD symptoms and again her doctor suggested we try medication. I was seeing improvement in her, so I did not want to try any medication.

When Danica turned 4, she started speech therapy at the public school here. This was a full time program where she attended school daily. She was in a small classroom with four other students. Her teacher was amazing! I loved that woman. She really liked Danica and made me feel good about the choices I’d made for her care. I received daily reports on her progress and could see Danica really improving in just a few months.

After 5 months in school Danica was talking. She could tell me what she wanted, what she needed, and would tell me she loved me. Honestly at that point, she could have told me she hated my guts and It would have been music to my ears just to hear my baby girl talking. At the end of the school year her teacher recommended Danica for regular pre-school with speech a few hours per week.

We were making progress by leaps and bounds!

Danica entered pre-school just before she turned 5. As the year went on, her progress continued to improve but the OCD got worse. I finally allowed the doctor to prescribe Danica Risperdone. I told the doctor we would try it for one month but that was it. If it did not help, we were stopping it.

Was that the best decision ever? YES! After 2 1/2 weeks or so I saw Danica do a 360! This medication was helping! The OCD symptoms slowly disappeared and her moods were stable.  She seemed so much happier! She was interacting with other children and finally looking at me with those big green eyes.

Our family was finally able to do the things we wanted to like going out to dinner, taking the kids to the park and other family outings without stares and snide gestures from ass holes who had no clue what was going on. The pieces were coming together and I could see a future for my baby girl.

The last year has been great! Danica has learned to deal with some issues (via therapy) and is doing well in school. The violent outbursts are slim to none and she is happy! She talks just fine (with a slight impediment) and is writing!

While I wish my daughter did not have to deal with Autism, I am glad we were finally able to pin point the issue and work to help it. I often see parents say they would not have their child any other way, but I feel differently. I wish my child did not have Autism, not for my benefit but for her own. I would not wish this upon anyone.

Since we can’t always decide our own fate, education is the key to making it work. I will not allow Autism to slow my child down, nor will I allow it to alter her life any more than it has. I will do everything in my power to aid my daughter in a meaningful and productive way. I want her to lead a normal life and do not want her to be looked at differently or judged by a condition she had no control over.

{ Final Thoughts}

After our experience with vaccines, I have since done a lot of research. I’ve learned to do my own research and not rely solely on what a physician says. I understand most physicians use the guide provided by the government for vaccines and they truly believe it’s the best. I however, feel differently. While I understand the need for vaccines, I have made different choices with my youngest children. We now delay vaccinate. I make the vaccine schedule and do not allow multiple vaccines be administered at once.

My personal belief is that an overdose of vaccines caused Autism in my daughter. No one will ever tell me any different and I will do my damndest to support other parents in the same shoes and offer donations to further research.

About Tara V

Domestically challenged mom blogger of 5, retail therapy believer, organic coffee drinker & interior design enthusiast. Trying to keep up with our busy lives often leads me to needing a caffeine IV!

Comments

  1. Wow. What a story. I kept reading thinking, “wow, wow.” I can’t imagine the pain you went through when your daughter was so suddenly sick and then when doctors couldn’t figure out what was wrong. And with such sudden onset. I am happy to hear that she is doing better now. This does scare me. I have a toddler who has been given vaccines on schedule. I get nervous every time that something will happen. Thank you for being so honest with your story and I wish your family the best.

  2. I must say, as a mother of two autistic children (although my younger one has not yet been diagnosed I am pretty sure) and I relate to you in many ways. I remember asking the doctors about vaccines in relation to autism but they dismissed it completely and referred to multiple research on the matter. I am not completely convinced. Although my older boy has been behind on most developmental milestones from a very young age, that didn’t go for my younger boy and after he was vaccinated the last time his speech (that wasn’t too developed before) suddenly came to an abrupt halt. Yet, he did not develop any fever or anything out of the ordinary so I’m not sure that is what happened or if it was just a matter of time.

    Either way, I like your descriptive way of writing and your determination. I will most definitely be coming back and following your writing. My very best, Ragga.

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