10 things that I wish you would accept, no questions asked- written by a 22 year old with Autism and 10 more things I hope you can understand- written by me
1) I can be surprising good at one thing ( remembering conversations precisely as they happened many years after the fact) and surprising bad at another (like keeping track of receipts or remembering the procedure for filling a prescription.)
2) Just because I have the words to type it does not mean I have the words to say it.
3) I really do hate to melt down, especially in public. If there was another way out I would always take it.
4) I never play stupid. If I ask a question or say I don't get it, it means I don't get it. Please don't make me feel dumber by saying that I'm faking it, just because it seems straight forward.
5) What may be slightly bothersome to you, like the waistband on a pair of pants, can cause me to be a witch all day... or at least until i change clothes! If I'm crabby, it's because something is physically uncomfortable in the sensory realm of things. Until that thing changes, I will continue to be crabby.
6) I can't control my excitement over cats. So if you mention cats or point out a cat realize that I'm going to get excited. Let me enjoy it. A little happiness never hurt anyone, eh?
7) I am often completely unaware of self injurious behaviors. I scratch, hit, bite, and pick often, and much more frequently when I'm agitated for some reason. In the moment I don't know that I'm doing it; if made aware it's so compulsive that I almost physically can't stop myself. But using my head, obviously i don't like the results of it.
8) I am exactly the same person inside regardless of how engaged ( or disengaged) I am with the environment and others in it. Yes, you might have to change some things based on how I'm reacting in the moment, but please continue to treat me like the person I am.
9) Engagement and happiness do not depend on one another! I can be just as happy off in my own world as I am fully engaged with you. However, a lot depends on you, here. If I'm disengaged and you're forcing me to "act normal" then no, I don't feel very happy. If you're interacting with me in a way that I can be in that moment then I can be as happy as I've ever been.
10) While autism does mean that I am absorbed within myself (aut means self, after all) , that doesn't mean that I don't want you around. If you can come to me, rather than forcing me out of my world to come to you, then I'd love to let you in. There's a whole world in here: maybe you should check it out.
There are so many reasons I love this. First of all- It helps me understand my son a little better. Additionally it gives me hope that Robbie will be able to express himself as this young woman has done. Lastly it has given me the courage to write my 10 things list.
1) When you see a child "tantrum" in public please do not assume it is a combination of bad parenting and a spoiled child.
2) Please be understanding of the limitations we face as we try to decipher what Robbie wants/needs. Please don't compare Robbie to other children his age.
3) While I understand the thought process- I do not believe in God only gives you what you can handle. Everything happens for a reason.
4) If you have a possible solution to a particular challenge we face- I'd love to hear it.
5) Don't be upset if i do not take your advice regarding the solution because there is a high probability we have tried it, researched it, and used it previously.
6) Things that work today may not work tomorrow. Our issue today may not be our issue tomorrow.
7) If I am defensive regarding my son- please don't hold it against me. I am often scared, sad and tired. I am trying to balance the expectation of a " normal" life for Robbie and the facts I have learned about Autism.
8) The rate of Autism is increasing. 1 in 70 boys are diagnosed. I do not know why. I have a hypothesis- but do not not know why.
9) I am not Jenny McCarthy, or any other celebrity who had the good fortune to "cure" their child. The reality is they have hundreds of thousands of dollars at their disposal and there is huge possibility those children were not truly autistic to begin with. They could have suffered from many other things.
10) I love my son more than my own life and would not trade him for anything in the world. Rob (Dad) and I are doing everything we can to ensure Robbie is loved and will be taken care of for as long as he should need.
Thursday, August 26, 2010
Monday, August 9, 2010
A note from my Mother- to all Mothers of handicapped children
I received this via email from my mother today. It touched me in ways I can't express. I hope another mother of a special need child reads this and finds some comfort!
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth, son, patron saint, Matthew, Forrest, Marjorie, daughter, patrons saint, Cecelia, Rudgledge, Carrie, twins, patron saint..... Give her Gerard...... He is used to profanity." Finally, He passes a name to an angel and smiles. "Give her a handicapped child." The Angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God. Could I give a handicapped child to a mother who does not know laughter? That would be cruel." "But has she patience?" Asks the Angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She had to make it live in her world and it is not going to be easy." " But Lord, I don't think she even believes in you." God smiles, "No matter. I can fix that. This one is perfect. She has just enough selfishness." The Angel gasps, " Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize yet, but she is to be envied, She will never take for granted a "spoken word." She will never consider a "step" ordinary." When her child says "Momma" for the first time she will present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations." " I will permit her to see clearly the things I see....... ignorance, cruelty, prejudice... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side." And what about her patron saint? asks the Angel, with a pen poised in mid air. God smiles. " A mirror will suffice."
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth, son, patron saint, Matthew, Forrest, Marjorie, daughter, patrons saint, Cecelia, Rudgledge, Carrie, twins, patron saint..... Give her Gerard...... He is used to profanity." Finally, He passes a name to an angel and smiles. "Give her a handicapped child." The Angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God. Could I give a handicapped child to a mother who does not know laughter? That would be cruel." "But has she patience?" Asks the Angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She had to make it live in her world and it is not going to be easy." " But Lord, I don't think she even believes in you." God smiles, "No matter. I can fix that. This one is perfect. She has just enough selfishness." The Angel gasps, " Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize yet, but she is to be envied, She will never take for granted a "spoken word." She will never consider a "step" ordinary." When her child says "Momma" for the first time she will present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations." " I will permit her to see clearly the things I see....... ignorance, cruelty, prejudice... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side." And what about her patron saint? asks the Angel, with a pen poised in mid air. God smiles. " A mirror will suffice."
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