Beginnings…

She was only 2. There was weird behavior. Very strange behavior that didn’t match the odd behaviors my friends kids. It was getting weirder and more frequent. Then there were the tantrums. The hours long tantrums that were fueled by anger and, wait, you did notice I said hours. As in multiple hours. Like sometimes up to 3 hours. Then she’d be exhausted and fall asleep. Still angry. Two years later we finally decided to talk to someone about it. There was a really good marriage and family counselor at our church, so we made an appointment with him.

We shared our hearts and examples of behaviors, and he talked with her a little. Then he said, “Well, bad news is I can’t help you, good news is I know someone who can.” So from there we went to see a child/adolescent psychologist that he referred us to. At this point we had just had our son, who was merely weeks old. Juggling our little girl who was 4 at this point and a newborn: HARD.

The psychologist was a very good fit for our family, and in fact we still see him. He was very perplexed with her track record and behaviors, but also by her moods. We started with ruling out what it wasn’t, which at that point could have been anything. We filled out so many surveys and tests, behavior charts, you name it, we probably filled it out. Detailed questions on sensory issues, tactile reactions, foods, moods, probable ways she would react to certain situations, what age she crawled, what age she began talking, frequency of mood swings… It. Was. Exhaustive.

We ruled out Aspbergers. We ruled out Autism Spectrum. We ruled out depression, schizophrenia, hyperactivity disorder, delayed speech disorder, separation anxiety, and oppositional defiance disorder. In fact it felt like we ruled out everything. Her ‘official’ diagnosis was then PDD-NOS: Pervasive Developmental Disorder-Not Otherwise Specified. A fancy name for: We-really-don’t-know-what-it-is-so-we-created-this-label-as-a-catch-all. Seriously. It’s a blanket term for a broad array of symptoms that can’t be put into any other specific category.

We floundered and struggled with more severe tantrums, violent behavior and ranting, and most nights we’d pass out. One of us in her room and the other putting our baby boy to bed. Somehow we maintained our home, our relationships, and tried to be as ‘normal’ as possible. It wasn’t working…

We entered kindergarten very wary and cautious to engage. By God’s grace she made it through, but not without a pile of struggles. Mornings consisted of her waking up angry, refusing to get dressed, eat, or do anything to get ready. We would have to physically dress our now 5 year old as if she were 2. The crying and yelling and frustration of just getting her to school, on time, were more than we could handle. We didn’t know where to turn and didn’t know who could help us. We really were ALONE.

Then 1st grade came. After asking friends with kids who had special needs, we were advised to look into asking for an IEP. In SoCal that stands for an Individualized Educational Plan. Once in place, the IEP had to be followed by the teacher and the district. And as changes were made in the classroom, we saw small changes in her behavior at school. Not huge changes, small and subtle changes, but improvements nonetheless.

This was just the beginning of the roller coaster ride we never knew we could never get off.

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