Dear Kate: A Little Girl Answers Your Questions About Autism

12/10/2013

Dear Kate,

Why does your mother give me dagger eyes when I am only trying to offer sound parenting advice at the grocery store. If my child was screaming for the apples in another person's cart I would take him directly out of that store and home for such behaviour.

Sincerely,
Mom of the Year.

Dear Mom of the Year,

My mother is well aware of how you would handle the situation. She has been told multiple times by other 'Mom of the Year' recipients. She chooses dagger eyes as a response because to explain to you that you are making matters worse is futile and bargaining is not an option when I am experiencing a meltdown. During these moments I am unable to receive or express any level of comprehendible communication and I get stuck on the object of my intent. My mother understands that she will serve me best if she helps me ride out the emotions until I can become calm enough to move on. If you would pay attention you would see that she usually does this with a strong hug and some redirection and I will soon melt into her arms for comfort and rest because these moments take a lot out of me.

Best,
Kate

Dear Kate,

Why do you speak in jibber jabber? My daughter is younger than you and she was speaking in full sentences before she was even born.

Sincerely,
Future Harvard Mom

Dear Future Harvard Mom,

I speak in jibber jabber because when I get very excited or very upset I lose my ability to communicate verbally. It's almost like when you feel so inadequate you can't help but lose your ability to tell the truth. We are very impressed that your daughter is so advanced. I hope she never dares fall of the pedestal. It would be a long way down with expectations like yours.

Best,
Kate

Dear Kate,

Why do you obsess over things? Why can't you move on. Come stay with me for two weeks and I will straighten you out.

Sincerely,
Dick

Dear Dick,

The world can be confusing and scary when communication and socialization are not intuitive. I find much comfort in the things that I do understand. New and unpredictable situations can be overwhelming so I will often seek refuge with known routines and items. Furthermore, I do enjoy learning every detail of a preferred item or topic because I love things with an intensity that will allow me to master the knowledge of whatever I eventually choose. As for your kind invitation, I would need less than one hour to straighten you out, but I am far too kind to make such an offer.

Best,
Kate

12 Comments

Kathie Lawson- Brett

12/10/2013 06:14:45 am

This is beautiful and very well put. My six year old Granddaughter is autistic and her parents struggle so much with the off handed comments from people and the looks she gets when she cannot regulate. Personally, I have no issue with providing a bookmark that I borrowed from this site and offer to educate people when this happens

Juanita Currie

12/10/2013 10:54:11 am

Very well put . I have experienced al of the above with my now 14 year old PDD SPD ADHD lad the old saying comes to mind "judge not lest ye be judged"

Linden

12/10/2013 07:33:18 pm

Even in it's humour, this brought a tear of "overwhelmedness" to me as scenes of my own daughter and I flew through my mind. She's undiagnosed as yet and so misunderstood for it. I don't care for a label, if only people would afford her (and I) some non judgemental understanding.

Tracee

1/14/2014 12:39:55 pm

my husband was never interested in a label either. When you love your child it is unimportant to know what it is that makes them special. But in a world of people that are ignorant, you almost need one to get them the adequate help they need in school and life.. Look into it more the resources are really important

LOL. I can feel all the past judgmental eyes burning holes into me as I read this!

12/11/2013 02:16:23 am

Kelly Malone

1/9/2014 01:12:56 pm

My eight year old son has asd also he is non verbal and he like you is very hug-able. I congratulate your mom and dad for standing up for you.My son also has epilepsy that he inharted from his father. I do understand the obsticals you have to go through becuse I am there to

Catherine Gagliano link

1/14/2014 03:46:36 am

Dear Shanell,

Today I was having a very emotional day until receiving and reading my yahoo email in regards to your daughter Kate and your flight from Disney. It really touched my heart.

I'm in the process of writing/publishing a book about my journey with my two boys with autism. One whom resides with me only on the weekends. (My unconditional love for him and my desire to give him an independent life has not come without the cost of a broken heart.) Even though somethings may seem logical in your mind, it is not logical in your heart.

After reading your article today, I just wanted to say thank you for sharing. I struggle with the apologizing in public and the anxiety of the unexpected. That man on your flight was an angel and I truly believe it was meant for me to receive your article today to remind me that their are many good people like him that can bring warm and understanding to us as parents and to such a mystery illness.

My book has been a work in progress for the passed year and I'm sharing my story to help others and to let them know they are not alone.

Anyway, thanks for bringing a smile to my face when I had tears rolling down my cheeks. For the man who showed that compassion for Kate, "your an angel." I truly hope that society will follow in his foot steps.

Sincerely,
Cathy Marinelli-Gagliano

1/14/2014 12:37:16 pm

Keep your chin up Kate's momma, you will do fine.. It gets easier as they get older. I have an almost 17 yr old autistic son and some of the things you spoke of I sure can relate. Too loud music ... waiting... fixating.. Lived thru it all and now have a very much adjusted young man :) Lots of patience.. And one thing I am so envious that you are able to hold her and comfort her in melt down mode ,,, When Tony was her age, if I tried to hold or comfort you would think I was kidnapping a child ... Good luck to you and I look forward to reading more of your journey with Kate and family.

1/15/2014 03:54:46 am

Instead of dagger eyes, I find a quick "he/she has autism and is doing very well in a difficult situation" to be much more effective at getting people to back off as well as hopefully educating them for the future.

Brenda Fletcher

1/17/2014 08:52:51 am

Kate and her Mother are AWESOME! And honest, determined, loving and STRONG. I have a nephew, Andrew who is in his first year of college, who also has autism. I witnessed my Sister-in-law Angela and of course Andrew going through so many of the things that you have the courage to share here with us. I think you are an extremely courageous Mom to be able to share with the world, your own frustrations with some of the situations you've had to endure because of the selfishness and ignorance of some people in this world. You do it in such a witty way as to get your point across without being hateful. You are doing an excellent job of attempting to educate some very uncaring selfish folks or should I say fools out there. Andrew has grown into the man he is now because he also had a mother like you, who learned all she could about her son's condition and then fought tooth and nail with everyone she had to along the way to ensure that Andrew was treated fairly, and got a good education without being treated as "less than" any other child out there. That is one thing that he nor Kate are not, just because they are autistic. Angela did such a great job with Andrew and she was so dedicated that she went back to school and is now a Special Ed teacher at our local middle school. She did not begin this endeavor until Andrew was five. But she did it for Andrew and her family. We are all extremely proud of Andrew and Angela both and I have no doubt that with the strong sense of self and even stronger show of what a determined and protective mother you are, that Kate as well as the rest of your family will all endure all of the unnerving, unwelcome, and ignorant people that you will cross paths with in your life. I love your website and thank you for trying to educate those who truly need the help because perhaps they are dealing with their own child's diagnosis, and also for trying to educate those folks out there who are just selfish and need a good dose of their own medicine, and a lesson in understanding, politeness, and empathy. Thank you and keep up the great job with Kate and your family. We need more people like you who are not afraid to share their courage and love.

Alexander London

1/18/2014 12:52:10 pm

Dear Kate's Mom,

I suppose it is not your style to just tell a few of these diaperheads who criticize your little girl to go jump into the ocean (deep end...,) but I promise you that they are simply reflecting their own inner hatefulness when they give you grief or look with a stinkeye toward your little girl.

There are quite a number of men like the one you met on your flight, who recognize the need for patience and kindness sometimes on the edge of the moment...

I once was en route to PA via Chicago when all the planes were grounded due to snow and freezing weather. I was lucky to have a secretary who kept track of my whereabouts and reserved me a room at the Hilton Ohare for three nights, knowing that it would be at least a day or more before we could fly out again, so I was covered and not inconvenienced...not so a mother of two young kids, one of which was a Down Syndrome person.

I observed them for a few minutes, then went on to my room a couple of hundred gates away, but still on the airport grounds. I couldn't get them out of my head, so after a change of clothes I went back down to the concourse where I'd last seen them, and there they were.

Ended up convincing the Mom that I wasn't some sort of criminal, and invited them to spend what turned out to be two days in the room I had for myself. There were actually two rooms, one bedroom and a front room with a foldaway couch.

She called her husband who was out of his mind with concern, they spoke, I spoke, etc. and room service had a ball with us. Fortunately I had a boss who also has a heart and understood why there was an extra day on my hotel bill, along with additional meals.

We got their travel squared away, I gave her fifty bucks and as a grand poo-bah of mileage arranged for a steward to collect them in the room and get them to their flight three days later.

I'm not sure I ever felt better in my life, and I still receive the occasional Christmas card from them, now twenty years afterwards.

As a dyed-in-the-wool self-important business dude with million-dollar deals in my briefcase, I simply could not do just nothing...which turned into everything.

You ran into one of me...God Bless

/AGL

diane

1/18/2014 01:36:28 pm

I do not have any children, I'll give you that info right up front. What I do have are experiences. I taught and have worked with some autistic children. I do understand the humongous range of idiosyncrasies that plague the autistic person and his or her family. I have dealt with a friend who finally stopped inviting a close friend over b/c she seemed to feel it was her time off as a mother when she came to family events. I barely knew this woman, but found myself following her child around so that he did not maim or kill himself or others (he did almost burn my friend's house down, so I felt I should at least help her keep her home and belongings intact). As he grew, he got harder to deal with and would often injure other children at the parties, so, they had to go. And it was sad.

THEN, there was my brother's best friend. He and his wife had twin boys who are autistic. His wife lived in denial as long as the school would allow, and by that time it was too late to possibly "improve" the level of the disorder (did I lose you?). She refused to separate them in school. One of the boys was a bit higher functioning, but was held back by staying with his brother. He could have learned a lot more, had she let him.

Ultimately, my friend and his wife divorced. It was beyond ugly. He had met someone and fallen in love. He deserved that too. He deserved to be with a happy person who wanted more out of life. The woman he ended up marrying, ended up going to medical school and will specialize in Psychiatry. Her mother is/was an occupational therapist. When he broke free from the evil grasp, he and the boys moved to Texas and made a new family. The couple had a baby of their own, adding to the boys and my friend's step-daughter. They studied, they went to Europe to be trained, they worked so hard, and eventually opened a clinic serving families all over the country. Unfortunately, even with all they put into it, it didn't work out.

There is more to the story, but I'll skip some. The boys turned 18. They have been going back east to see their mother a few times a year this whole time. The boys were in a great school in Houston and really thriving. They had a sister and baby brother, and were in a happy, loving home. They went to see their mother after they were 19, I think for their birthday, and she never sent them back. She would always just sit them in front of the TV, so I'm pretty sure it hasn't gotten much better. I believe they have jobs and are doing as well as can be expected, but my friend has not seen his sons in years. He doesn't talk about it and legally there is nothing he can do. They were torn from their loving home, all out of spite.

So, you are wondering why I shared that and when I'm going to shut the hell up. I will tell you. I only read part of this blog, b/c I saw the story about the plane ride and that wonderful man, Eric. Then I read more. I want to say that I love you. You are an amazing mom doing an amazing job (I'm sure your hubby helps too). I love your writing style. We could so hang. Keep up what you are doing, duh, like you wouldn't. I look forward to both books.

Big hugs from Delaware!! (it's a state, in the U.S., an actual state, all it's own....also known as DelaWHERE?)

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Dear Kate: A Little Girl Answers Your Questions About Autism

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