We, as mothers, as fathers, as advocates, as teachers, etc. are always putting our children first. Don't get me wrong; we should if we want them to flourish and grow. However, I think now, and then, parents need an outlet. We need to be heard. We spend so much time finding ways for our children to be heard, that we can forget about taking care of ourselves. This is not only unhealthy for parents but in the long run, it only hurts your kid's progress as well.
One area for me that is especially touchy is what I would like for other parents to know about the diagnosis, the lifestyle, our battles, our wins, our failures and our mistakes. We are no different than other parents. No child comes with a manual and therefore every person I have every met with a child can tell me a story where they feel that they failed. That is only natural. But please keep the following in mind regarding my son and me.
- Please don't push your opinions about how to raise or treat my child. Advice is welcome. Criticism is not
- Autism does not define my child. He is so much more than that.
- Autism is not contagious so please don't act like it is.
- There is no cure for Autism, and you know what, I am OKAY with this fact. I don't want to cure Autism. I love Jacob just the way he is as does all parents.
- Please don't put limitations on my son because of what you have read or heard about symptoms, treatments, or prognosis. There is a lot of misinformation out there about Autism.
- Not all people with Autism look or act like Dustin Hoffman from Rainman. Don't expect my son to dazzle you with extraordinary gifts or talent. He is so talented in his own way so talk to him like you would anyone else. You will find that he has much to add to most conversations.
- My son can hear, see, and sense your mannerism so, please refrain from acting and talking about him as if he weren't in the room.
- Neither you nor I can predict the future so don't think that Jacob hasn't one. I will never give up on him so please don't either.
- There is no "this is all he'll be" in my house or life. Please respect that.
- Not all people with Autism are alike. Are all people with cancer alike? Are all people with diabetes alike? And the list goes on.
- I have learned acceptance so, please do me a favor and accept Jacob too.
- If you don't understand something, PLEASE ASK. I won't be offended. I would be happy to help you understand Jacob more than you do now.
- Jacob may not be "socially appropriate" so don't get offended if he doesn't make eye contact with you or acknowledge your presence. He is not being rude.
- Jacob knows how to love; he just might express it differently.
- Don’t feel sorry for me. I am the luckiest person and mom on this planet because Jacob allows me to be part of his world.
I would also like to share with you a "To Those Who Treat Kids With Autism" letter that touched me deeply. I hope that you will read it, reflect on it, and pass it along to others.
What Parents of Special Needs Children Want You To Know
- Sometimes I am more than my child. (I need you to point me in the right direction.
- Allow me to be in disagreement - also known as denial. (I may not be ready for you yet - leave the door open
- We hate the word denial. (It sounds like I am doing something dishonest or wrong)
- I probably won't get it the first time. (Please repeat the information)
- Some types of therapy do not make sense to me, and then I have to explain to my spouse what I am doing. (Explain why the treatment is important and how it fits my child's progress)
- Sometimes I will make a mistake. (I will do things differently than you)
- You may be the most professional person I know. (This can be intimidating especially for young parents)
- Don't be offended if I question you. (This is how I find out what I need to know)
- I don't think I hear anything after the word "disability." (Please repeat the information)
- Yes, I am angry and defensive. (I am scared)
- You may not always know what I feel or what I mean. (That's okay. Keep trying)
- Give me credit for knowing more about my child than you do. (Honor my relationship with my son)
- Let's try my ideas sometimes. (They might work in some cases)
- I need to know that I am doing the right thing.(Please don't forget the emotions I have)
- Set realistic goals that will help my child have a fulfilling life. (Help me understand the best plan so I can be the best parent possible)
- Don't compare my child to another. (It makes me feel that you are not paying attention)
- Don't take my dreams away. (I still want the best for my child and will do whatever I can)
All of these tidbits of advice are not only felt by me. Over the years, I have met so many parents who feel very similarly. Please pass this along to those you know who have children with Autism. It will make them realize that they are not alone.
Regards,
~ Holley
