Tag Archives: Autism

Did you cry?

I sat talking with a patient about a year ago. Her 36 year old Down Syndrome son had just tried to sneak a soda and we were discussing the challenges our children faced as well as what we faced as parents.

“Did you cry when you found out?” She asked me. “I did. I bawled for days. I didn’t know what else to do.”

I felt bad telling her the truth because the truth is, I didn’t. I didn’t cry leaving the developmental pediatrician’s office that day. I left feeling relieved.

“Honestly, no.” I hung my head. “I felt relieved. I spent 5 years feeling like I was failing as a mom that I was so happy to hear that this wasn’t my fault.”

It still sounds self indulgent.

But the truth is, by the time she was diagnosed I had cried a lot.

I cried every time I couldn’t get her to eat as a newborn.

I cried when I knew her very rigid schedule was disrupted because I knew I would spend the next 48 hours with a baby that couldn’t cope.

I cried when her temper tantrums seemed to never end.

I cried when the next one started again 20 minutes after the last one stopped.

I cried when we couldn’t get her to eat.

I cried when she would bite me and pull my hair.

I cried when we exhausted one therapy and we still weren’t “normal”.

I cried when I made the appointment for yet more therapy or to meet another specialist.

I cried a lot.

And I still cry when she struggles.

But the truth is, the tears come from struggle, not a label. These days she is a happy kid. She’s starting to make friends and finding herself in hobbies. She excels in school and radiates with her accomplishments. Her diagnosis doesn’t upset me because it doesn’t define her and it allows us to deal with the tears constructively. And that is something to celebrate.

Fair

Fair.

It seemed to be the theme for the day.

It started with a patient I was working with that has been battling Parkinson’s. After he informed me that he was going to be disabled for the rest of his life, I just responded with “I know, it’s not fair”. He shrugged and said “it’s life”. Seeing where the conversation could go, I said “well, the phrase isn’t ‘life is fair'”. We left it at that and continued on with therapy.

Skip ahead a few hours and I for some reason thought my whole family would enjoy a Friday night at the town carnival. Now, to be clear, by the whole family I mean “the kids”. I’ve been here way too many times to enjoy the scene as an adult, but to be fair, for a kid it’s pretty fun. 

It’s fun, but it’s loud, it’s crowded, and there are a lot of lights and things to look at. Hell, I get overstimulated. But for a 7 year old autistic child heading home 30 minutes after bedtime, it was way overstimulating. This was as lose lose situation for us. I knew the carnival would bring tears but I also knew that not going would bring tears. What brought the tears on started was the fact that her brother choose to get a fancy you gun that made lots of noise and lit up while she chose to get cotton candy, which he was unable to eat. Charlie would not shared his fun new gun and I told Molly she couldn’t play with it until she wanted her hands. We were 3 minutes from our house. In that 3 minutes we got to how it wasn’t fair that her brother’s peanut allergy was ruining her life because she couldn’t play with his fun because she ate cotton candy. (If your confused, welcome. Pour some wine and join my team). Then came the doozy…. It’s not fair that her friends get to have fun and we never do anything fun. Remember, on our way home from the carnival, ate cotton candy.

Needless to say, the night went downhill quickly. When things calmed and I held my Chardonnay, paying bills at 9:00 PM, all I could think was “shit, none of this is fair”.  It’s not fair that she can’t have a good time, having a good time. It’s not fair that he has to miss out on delicious food and events. It’s not fair that he gets blamed for ruining things because he could die and wants to be included. It’s not fair that we are raising 2 difficult children. It’s not fair that he will go under anesthesia for the third time in 5 years. It’s not fair that no matter what we do, big compromises have to be made to keep peace or someone alive. It’s not fair that I feel like several 10 minute crying fits a day is “getting better”. Life isn’t fair. 

The more things change…

It’s 3PM on a Saturday, I just poured a glass of wine.

Stampy just took the kids to a farm to run around and give me some space.

It’s been a long week.

We had some difficulty at school at the beginning of the week. The good thing is, we have a teacher that took notice and wants to help. The bad thing is, it probably won’t matter.

I realize I’m pretty cynical, but we’ve been down this road before and the more things change, the more they stay the same. I have a hyperlexic kid who can’t communicate. I have a child riddled with anxiety. I have a brilliant child that can not figure out what to do unless told specifically “do this”. No matter the challenge or developments, these things remain the same. These are the roots of our problems. These cause no difficulty (yet) in school so help is often hard to come by.

Molly’s teacher told me I seemed unhappy at our conference. I’m not unhappy, I’m just lost. I don’t know how to help. We try and we try but we aren’t always successful and sometimes we are just out of ideas. I’m tired. I feel like Molly is often crying for help in her own ways and we can’t help her, sometimes when I try I feel like I’m crying for help and no one is listening.

I face the challenge that it’s hard to describe Molly. I had an “aha” moment today at therapy but it took three years of observation to get there. It came after Molly’s teacher informed me that she noticed Molly seemed lost in class one day. Molly was just standing at her station, not asking for help and not doing anything. I know that lost look. Then we went to an activity at her school. I told her she could go with her friends to the different stations but she just looked at me and looked scared. So off we went to the first station together. Then I saw it. It smacked me in the face. She couldn’t figure out how to decorate a cookie because no one gave her instructions. In fact, she couldn’t even figure out how to hold the plastic knife to spread the frosting. I realized then that she was the same three year old wondering around her preschool class without doing anything because no one told her what to do. Which made me realize why sometimes we have so much difficulty at home. I’m forcing independence on her and she doesn’t know what to do.

Then I felt sad. I felt awful it has taken me three years to catch on that she never developed out of that trait. I realized we’ve grown but we haven’t changed. I’m still as lost as I was three years ago when this battled started and she’s still the little girl that is lost.

Things have stayed the same.

You have nothing to worry about

At 9 months old, I informed our pediatrician that I was concerned because Molly didn’t respond to her name or really turned when we talked to her, but I knew that she could hear. He replied with “the important thing is that she can hear, you have nothing to worry about”.

At 20 months old, I told the nurse practitioner that I was concerned about some behavioral issues Molly was having. She replied with “It’s very normal at this age, you have nothing to worry about”.

At 2 years old, I was concerned still about the length of temper tantrums we were having and the face that cutting her hair seemed to settle them. Again, I was told “you have nothing to worry about”

By 3 years of age, I said I was concerned that she didn’t tell us she was hungry or thirsty or communicating, wasn’t potty training, was screaming for hours on end. After spending 10 minutes with us, the pediatrician said “She’s not autistic, you have nothing to worry about”.

Only I did.

I had everything to worry about.

She is autistic. Her behaviors were not normal development and I was not being heard. So, I did what any sane person would do that was quickly losing their sanity and went somewhere else for help. But the words still rang loud “she’s not autistic”. I believed those words.

We spent 2 1/2 years in and out of therapies and met with multiple specialists, all who said the same thing, “I think she may be autistic”. I believed those words.

I was confused and honestly, I don’t think I wanted to know the answer. But we hit a turning point. We hit the point where we needed a diagnosis to know which therapy road to travel, which specialist to see and to get a lot of this covered by insurance. So, we went.

We traveled over an hour for several appointments to a wonderful pediatrician. One of the first to spend significant time with Molly. The one who gave us the answer we needed. The answer that Molly needed. The answer that seems to make our life harder, but ultimately will make our life easier.

She is autistic.

She is sensational.

We had everything to worry about.

We made a decision

For almost two years now I’ve had a little noise in the back of my head saying “Kennedy Krieger”. I usually hush it up and go back into my denial world. I’m usually up front and open about “we need help” and “things aren’t right”, but somehow making the phone call to the children’s hospital seems extreme. It means we’ve hit the big time. I’m not totally ready for the big time.

Almost two years ago when we started with behavioral therapy, we were warned at that point we might not get all we need through local services. We weren’t promised cures, just a good ole fashion try. We were willing to go the least intensive route. Local behavioral therapy, local occupational therapy. And why not, even the school psychologist couldn’t give us 100% diagnosis. Everyone hovered over autism, PDD, anxiety disorder but were in agreement that something was off and most likely Molly was not a case of pure Sensory Processing Disorder. But, then again, she could be. We had a 3 1/2 year old and 18 month old. Least intensive seemed to be what would suit our family best.

We aced behavioral therapy and felt we could breathe. We plateaued in progress in occupational therapy. We started therapeutic riding. We couldn’t deny her improvements. There were many. She was becoming more social with peers. She was wiling to get on her bike. She occasionally would eat something other than pasta. She started using the bathroom at school. Occasionally. We also couldn’t deny the massive behavior problems that continued. The unwillingness to break from routine. The violent, and I mean violent, tantrums. The unwillingness and inability to be independent. The denial of what her body was telling her.

For those of you who don’t really know what Sensory Processing is (and I realize I’ve never really explained it here), it’s a incorrectly wired nervous system. Problems arise in hearing, smelling, tasting, feeling, seeing, balance and internal regulation. The Sensory Spectrum has a great picture, and article explaining SPD here. With Molly, we deal with noises, with balance (proprioception) and internal regulation mostly. And although it seems small, the anxiety and need for perfect routine are enough to drive you crazy. Then we deal with the fact that she doesn’t know she’s hungry, thirsty, hot, cold or any other body sense you could think of. Ever tried to get a picky eater to eat that doesn’t think they are hungry??? It’s impossible. We eat noodles every day. She becomes “hangry” quite often.

So here we stand. We are two months out of going to kindergarten and six months into some of the worst behavior problems we have seen in a long time. Each time we get through one batch another creeps up and we have more defiance, more stubbornness and more battles over every. little. thing. 

Our social worker thought we needed to go to the big guns. We were past what she could give us. We had done everything on their treatment scales. What we need is not here in town. It’s time to call Kennedy Krieger. However, knowing that I am in denial, she also gave us a few names of in town people that might be able to help. Might. I am tired. I am tired of going from therapist to therapist. I am tired of resolving and living through melt down after melt down. I’m losing patience. Fast. It took a week of deliberation between Stampy and myself but we agree. We need it. Our family needs it. Our daughter needs it.

I make the call tomorrow.

Wish me luck.