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I don't really want to be here...but I am

Updated on July 14, 2011

Accepting Your Path

My son has joined a Social Skills class. He really loves it. I must be honest, I do not feel that Social Skills classes should be limited to those with special needs. Most people suffer from lack of proper social skills. However, he has a diagnosis of Asperger Syndrome and anyone who knows about this disorder will be aware that they are lacking in the basic Social Skills. He spends the hour talking with other teens in the group about their day, whatever interests them and playing games that encourage appropriate conversation and behaviors. He looks forward to this hour and has finally made some friends. The report I receive each week at the end of the session is always upbeat and positive. Of course it is, my son excels in places where he wants to be and does not have to work too hard.

I was walking up the long driveway to pick him at the end of the session when this thought popped into my head. "I don't want to be here." Honestly, I don't. It's not the people I have met, because they are wonderful and supportive. I have met other parents and had nice conversations. I feel better because I no longer feel isolated. It isn't about that.

I don't want to be there. I still, after all this time so wish my son did not have this disorder. I have spent the greater part of the 13 years since his diagnosis, hunting for an answer. Countless hours on the computer, in the library, at the bookstore, talking with doctors, therapist and even healers. I have sat in church and prayed, I have lit candles in front of statues of the saints. It doesn't matter.

This is my child. For the first time since his diagnosis, I accept him. I can finally say that I can "speak Asperger". I am writing a book about finally comprehending my child after thirteen years. I could understand him, but not fluently. Not with confidence. This is not true now. I can hear him, I can understand what he wants and what he needs...finally. But I still don't want to be there.

I don't want to be taking my son to therapies. I want him to be a "regular" fifteen year old, texting, making plans with his friends, playing sports. I want to be happily looking at the many colleges he has letters from since he scored so high on his PSAT. But I cannot since he can't go to a college that does not offer support for him. I also don't know if he can go away. He lacks the basic survival skills that other young adults eventually develop. My thirteen year old has them. My oldest does not. He is like a small child in many ways although he is six feet tall with hair on his legs.

I don't want to go to IEP meetings anymore to plan his yearly education. I don't want to keep fighting with the department of Education because his needs do not fit their budget. I want him to set his schedule with the school and be responsible for studying and be accountable like everyone else. If he does not know the answer, I do not want to worry about him having a major meltdown that requires a social worker to sit with him in a "quiet room". I do not want to watch him walking around the hallways not talking to anyone, because it is easier to not see them in order to focus on walking to his classroom. I don't want him to have to have his own teacher to spend the entire day shadowing him in school since he gets lost easily and anxious in class. I want him to take driver's education even though the last thing I want is a teenager driving my car. But he can't because he has trouble not walking in front of cars, I can't let him drive one. I don't want to have to have him skip the prom because it is too noisy and over stimulating for him to be there. I want him to do what everyone else does.

I went to a concert tonight that showcased Autism Awarenes. During the performance, several speakers were introduced and one said "we are all touched by autism. We all know a family who is living with it." I don't want it to be mine anymore.

However, as I said before, I finally accept my son. He is an amazing person. The amount of knowledge that is in this young man's head is astounding. He can carry on a conversation that is so loaded with facts that if you were not well versed in the subject before you started talking to him, you will be an expert by the end. He has a heart for many people although one would never think this. He sees something that his brother might like and stops to tell me that we should pick it up and give it to his brother. He has a gift card, but makes sure that he saves a small percentage of it to spend on his little sister. Oh... and you thought that those with ASD only thought about themselves....we all learn something new everyday don't we. He likes girls, he always has. He was elated the other day when he had a great day bowling. Not so much about all of the spares and strikes he bowled, but that the girl he has his eye on, hugged him after she bowled a strike.

He went to church and made his sacraments. We did not think he cared about not receiving his communion when his younger siblings had already, but indeed he did. He returned to his seat after receiving his first holy communion and threw his arms around his aunt and smiled so widely. It was a good moment. He remembers his promises and tried desperately to keep them. How many people without ASD actually do that? He feels remorse when he does something wrong....ahhh another trait we all thought people on the spectrum did not have. He is also handsome and friendly when he is comfortable. He is a kind, gentle, wonderful young man with a huge intellect. I am very fortunate. I don't want all of the challenges, but I have them just the same.

I may not be happy with the road I have been sent to travel on, but I must admit it has made me who I am. I would have never been as strong as I am today if not for my son. My husband and I would not have the strong marriage we have today if it were not for our son and the challenges he brought to us. We have been on a major rollercoaster in our relationship and we stayed on the ride. We did not get off and give up. We hung on because he was our connector no matter what we decided. We would always have to meet and discuss what we would do for him. So we stayed together and we worked very hard. It was the best decision in the world. My husband is my best friend, my lover, my confident and my fighting partner in the battle for what our son needs. He is a great dad to our other two children as well. We love to be together, we miss each other when we are apart. We look forward to growing old together.

I don't want to be here, but here I am. I know that I have been sent on this journey with a purpose. I am aware that there is so much more fighting to be done not only for MY son, but for others who do not have the strength or the ability to fight anymore. For those who have succumbed to the stress and the desire to "not want to be here". I am looking to start my own business to make sure that every child gets what he or she has the right to have and deserves.

It is a lonely life, it is very isolating. I think that I am better because of walking up that long driveway to the place I did not want to go to. I was met with many others who really don't want that to be where they are taking their children, but they are, so they will be okay with it.

I am a very lucky woman to be where I am, even if in my heart I don't really want to be there.


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    • kenneth avery profile image

      Kenneth Avery 

      7 years ago from Hamilton, Alabama

      hi, bizymomof3, voted up and all across the board. Great hub and a very-talented writer...YOU! Glad I found you on Hubs. Stay sane. Stay cool and peace to you.

    • bizymomof3 profile imageAUTHOR

      Joann Marotta Nellis 

      7 years ago from New York City

      Thank you Alaster, its so nice to read such wonderful feedback from other hubbers such as yourself. I have read the list of famous people to my son and the interesting thins is that so many on the list are already heroes of my son! Great minds think alike.

    • Alastar Packer profile image

      Alastar Packer 

      7 years ago from North Carolina

      Bizymom there's another hubber here who has Aspergers in her family and just wrote a short article on it. She had a list of all the successful and famous people who have it; and at some point in their lives overcame it. It is my fervent wish and hope that such shall be the case with your son. He's already an amazing young man. And you bizymom; are the true essence and life of motherhood.

    • La Papillon profile image

      La Papillon 

      7 years ago from Melbourne, Australia

      Hi 'sister' ;) many still believe that compassion, empathy, thoughtfulness, beauty, love and consideration don't abound in an autistic soul. I am a believer (in the depth of the child's soul) and have been all my life.

      Having my three children has reinforced my intuition and beliefs in the depth of the child's (especially autistic) soul.

      Look and ye shall find - I say ;)

      Your feelings are very common. We as parents wish for an untroubled life for our babes. We don't want them to experience challenges, such that others may not endure.

      My soul was completed when my children blessed my life. There are some times that are challenging, but these serve to deepen my faith in myself as a loving mother and the faith I have in my children's trust in me.

      Bless you 'sister'.

      Louise ;)

    • FunnyShirts profile image


      7 years ago from America. The Northern One. WERD

      It must be hard, but putting your kid first and doing the right thing for them is one of the most commendable things that a person can do! good for you!

    • profile image


      7 years ago

      I get it, Joann. I wondered for years why God picked me for this job. It wasn't what I had in mind. I wanted two happy kids, one boy one girl, and an annual vacation somewhere. Instead I have two boys, a divorce, IEPs and regular checkups at Shriners Hospital. It isn't until recently that I started to realize, God really did want me to do this for a reason. Not just anybody: me.

      I know lots of parents who aren't cut out for this kind of life. They wouldn't handle it. Me, I didn't know there was a choice. This is the life that's chosen me, and I'm okay with it.

      Would I want my son to be different/normal? Sure. I'd love to know who he might've been had autism not gotten in our way. I won't know that 'til we get to the "other side". Until then, I love him for who he is, and I love my life for what it is. Blessed.


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