Friday, April 19, 2013

150 Autism Street, USA.. Postmark?

For most of us, 150 Autism Street is where we live. It used to be 188, but we moved. It is in every city, town, township across this country. This address is with us no matter where we move. We have embraced it. In a sense, it means Autism lives that this address.

We live with it everyday. We know what it means to either have it or have someone we love have it. We know the good, the bad and the very ugly side of Autism.

The Very Ugly. We have all had those days where Autism will rear it's ugly head. Normally when we don't want it too. Its the day were everything has gone wrong, you are tired, and you just want to accomplish the one task you need to do. Then starts the epic meltdowns. For me 95% of the time I have no idea what starts them. The combination of over stimulation, tiredness and the change in schedule or it could something that is only known to the child. It begins the screaming, the biting,hitting and sometimes kicking. If this happens to you in a public place, then its ten times worse. Not only are you dealing with your autistic children melting down, but the judging and ignorance of the strangers. For me Meltdowns are the very ugly side of Autism. As you try so hard to be that good parent and all you want is for your child to just stop. You wish there was some magical spell you could say that would help. You also wish that people would just mind there own business. The last thing a parent who's child is going through a Autism meltdown needs is parenting advice. Again We live it, every single day. We know. This is not our first trip to the Rodeo, nor will it be our last.

The Bad. For me its the struggle. The struggle to make sure they thrive and grow. Getting them to daily or monthly appointments to three or more different services. The IEP battles with the school. All just to make sure these kids are moving forward. The is bad is the stress. The stress and worry if theses kids will grow up to be adults that can handle themselves. We know they will be adults, but if they will be able to take care of themselves when we are gone. That worry if we are making the right choices. I know every parent has that worry. But I feel with Autism Parents, it gets magnified. Which is why we need to fight harder for things.

The Good. I saved it for last. The good is always the small little victories that are made. The word that is said, the academic achievement or the expression of emotion that wasn't there before. The good is the love. Its always going to be there. Kids share it in their own little way. The hugs, the closeness or the smiles and laughter. Its the good that keeps us parents going. Its all those small little victories, we celebrate. We know that they all add up to something bigger.

So yes, I live at 150 Autism Street, USA. This is going to be my address for awhile. The number might change, but the street will always be the same.