I love Jess at A Diary of a Mom and Leigh at Flappiness is… too, so I completely understand why all of you love them. I followed Jess closely as she went to the White House and I went with Jess to Harvard and I will be eternally grateful that she took me along. I fell in love with Leigh over her beautiful Apology letter. I too enjoyed #youmightbeanautismparentif and #whatanautismparentneeds. I even added to the #AutismPride although not as eloquently as some of you. Yet, all of you break my heart everyday without realizing it.
My heart breaks because I know my daughter did not have the services your children have. My daughter did not have our understanding when she was little because we did not understand. We tried to get help, but we got the wrong help and during that time damage was done. Then bullying made everything over a hundred times worse. Still, she was on the mend until last year when the bullies rubbed salt in her healing wounds, and an intolerant teacher pushed her over the edge.
Then I convinced her to share her heartbreak and her successes with you, but she never got the support Jess and Leigh get, so she stopped sharing. She realized what I tried not to believe. Too few really care and we cannot make any of you care. We are insignificant.
Bullying is not as interesting as successes shared about cute younger children. There is no way to make it fun because there is nothing fun about it. I hope and pray none of you ever know the heartbreak of trying to help your beautiful children overcome the longterm effects of bullying or worse yet having to bury them because of bullying. I was hoping to help prevent this from happening to you. I now realize I cannot do that because no one is really listening.
We are misfits even on the Island of Misfit Toys.
Pingback: I Live on the Island of Misfit Toys « The Edmonton Tourist
Alicia,
Thanks for finding the strength to comment and for sharing how devastating bullying and the wrong kind of help can be. Your support means more to me than most, as I know you understand my daughter in ways even I cannot since you too lived through the effects of misdiagnosis and bullying. I have one favor to ask, and that is that you retweet my posts or like them on Facebook on the days you have no energy to comment. I appreciate all forms of support and I am adding you to my prayers. Blessings my friend.
I want the medical community to change the way they treat patients with psychiatric diagnoses too. Unfortunately, the school counselors listen to the bad advice of some psychiatrists and psychologists who were trained prior to Asperger’s and autism even being recognized in girls, and I have heard more than one psychologist say to large groups of people that the families are the ones who cause patients to have problems.
Yet, in our family, the biggest mistakes we made were the direct result of listening to bad advice from a psychiatrist and a psychologist when my daughter was younger. Even when she was correctly diagnosed, no services were offered either.
Right now I am focusing on loving and supporting her and giving her time to heal from the damage caused by being misunderstood and bullied. I am praying that with love, time, and infinite support, she will be okay. I also hope sharing our story helps protect others.
It’s really hard for me to comment on blogs, especially on blogs that talk about bullying, so the comment is late because I needed the energy to do this.
I need to talk about some personal things here first, I was bullied from the momment I joined school until my nervous breakdown on the last school year, I finished school at home, I believe this was one of the things that caused PTSD, the bullies were mostly students, but also teachers, family members and my therapists. I can’t go to college because classroom give me panic attacks. I also got the ASD diagnosis when I was 22 because there is little information in my country and when I was a child the “help” and services I got for my misdiagnosis only made things worse, even now with the right diagnosis I have no help and little skills. I did not recovered from bullying and feel quite hopeless because of those things.
Having said all of that, I believe fighting bullying is extremely important, but is ignored many times, I even heard that bullying is just human nature, I cannot agree with people who ignore it, I don’t have much courage to talk about it but I will always hear others that fight against this cruelty.
Pingback: May I Have Your Attention, Please? : Embracing Chaos
I’m so sorry that you weren’t able to get the help you needed when you needed it. Autism awareness has been a long time in the making. My two autistic cousins’ opportunities for help were somewhat more limited than my son’s. They are now 19 and 17, and awareness wasn’t much more than “Rainman” at that time.
It is entirely too easy to do long-term or permanent damage to a vulnerable child. Especially if perpetrated by an adult. You did the best you could with the best knowledge you had available to you.
I’m going to remember your daughter whenever I see an unkindness directed to our ADS kids in school. I hope that she will once again feel comfortable sharing her experiences. Best wishes to you both.
Leigh
http://www.flappinessis.com
Leigh,
I appreciate your understanding and remembering to help those who experience unkindness. I am glad autism awareness has come a long way, but I still think it has far to go when it comes to girls especially those who are verbal. I know Hawaii lags behind the rest of the country as we unfortunately frequently do, but I bet girls are still missed elsewhere too.
I remember worrying when I found out I was having a boy – not because I didn’t love boys – but because I felt almost in the clear with my daughter (strong family history of ASD). Girls really do get forgotten with this. In all the years I’ve been teaching, I’ve had only 1 autistic female out of maybe 10 boys. We certainly don’t want to not screen for our little girls as well.
I understand. I think that is the reason my daughter was misdiagnosed. Hopefully, things will continue to improve for our girls too.