Remembering Wesley: From a Bully

I began to sink down into my cold chair as the Autism Parents began to go around the room and simultaneously share how they had each been tormented in school by other students. Suddenly the memories of my school years began to play on in my mind.

I was back in 7th grade and reminded of Wesley. I could clearly see him push up his coke bottle glasses onto the bridge of his nose. The lenses were about 1/3 of an inch thick and seemed to drastically magnify the size of his eyes. I could hear his slurred speech as he sat there at the lunch table cursing and slamming his hand down repeatedly as he spit with each word yelling at the boys to stop picking on him. I could see myself release a slight chuckle.

In school I wasn't the one that was picked on. I was the girl that hung out with the kids that did the picking. Making myself unable to relate to these parents sharing their stories. At the end of the meeting I was left with my memories and the guilt that was weighing so heavily on my heart.

I have been away from blogging for a bit trying to collect my composure again after finally having my toddlers officially diagnosed here in Missouri. What I didn't expect in all of this was my son being diagnosed with moderate Autism versus a high functioning Autism and that in addition to a Severe Autism Diagnosis that my daughter would be diagnosed with mild Mental Retardation. It gives a whole new meaning to the word "retard" that we hear so commonly and casually thrown around amongst the ignorant with limited vocabulary skills. It puts a face on the word. It puts my daughters face on it. My sweet little 2 year old baby girl's face.

For some reason I have always had difficulty looking at my daughter without being reminded of Wesley. It breaks my heart to think of the ridicule and the bullying that awaits her in her future. My daughter starts school this year. So I went and bought her American Eagle clothes, the best shoes and the cutest hair flowers. Expensive Brand name clothes that we can barely afford amidst their therapies. Clothes that she will inevitably grow out of in 6 months all in the hopes that it could make the tiniest difference in her getting picked on by other kids.

I wish I could go back. Don't we all? Don't we all wish that we could go back and change something in our lives? This poor boy that didn't stand a chance amongst our cruel words, our lack of compassion and maturity. I wish I could go back and do things differently. I wish I could go back and apologize, to give him a hug and become his friend. Even after that, it still wouldn't be enough. Not enough to make up for never having said anything. Not enough for laughing. It will be the guilt that I will be reminded of each and every time my daughter gets picked on for being different.

She has me to be her best friend, to be her advocate, to be her mother and to protect her the best that I can. After that, all I can do is pray that Heavenly Father will be there with her to watch over her the rest of the way.

Finding the Balance: Making Time For Your Non Spectrum Kids

Nothing makes me cringe more than when  someone tells me "Sometimes I forget you have 3 kids." I am always left thinking "How could you possibly forget? I have a baby attached to me constantly." On top of that it hurts my heart that anyone could forget our sweet little Baby. It is so important for our families to learn how to Master this: Not forgetting that you have other children and making sure that others do not forget them as well.

It "can be" <--- if you let it, easy to get caught up with Autism and aaalll of the many therapists in and out of your home every week. When we found out that our 2 toddlers had Autism I was 6 months pregnant with our 3rd kiddo. AT FIRST, I was mortified that I was pregnant. NOT because I didn't want our little sweetheart but because I felt so guilty about bringing him into the whole "Autistic Siblings" situation. In all of my lack of knowledge on the subject, I was convinced that my son would grow up resenting me. So shortly after getting the news of Autism, my husband and I sat down and from that point set STRICT guidelines. Guidelines that we hold extended family members to as well.

How Our Family Balances Autism, Marriage Relationship and Our Non Spectrum Kids

  
1) Each one of our kids gets alone time with us (Daddy and Mom) EVERY DAY, not once a week but EVERY DAY. There are times in the day that my son will come up to me while I am holding our baby and ask me for something and I look at him and tell him KINDLY "Not right now Buddy. Mommy is holding [Baby]. Right now it's [Baby's] time with Mommy." My kids are COMPLETELY ok with this BECAUSE they know that later they are going to get my undivided attention as well so there's no jealousy. Sometimes I will pick a kid to go on an errand with me alone or I will take one with me for ice cream. They know that they will always get time with both of us alone.

2) Our kids have had nap time and bed time (it's never too late for you to start this) since they were 4-6 months old. So at that time my husband and I take our baby and go sit on the deck with him or we play on the living room floor. My husband and I get to talk and spend time with each other as well. We then put our baby down and that time is my husband and I's time together to snuggle, watch a movie, talk or play a game.

3) Do not let others forget you have other kids. Wherever I go I am wearing our son in his Moby Wrap so people see him. Right now we talk about Autism because we are meeting so many new people since we just moved here but normally in our home or when we are with friends we do not talk about Autism. We don't want our other children growing up thinking their childhood was all about the siblings with Autism.  If all you talk about is Autism and the kids that you have on the Spectrum then of course people are going to forget you have other kids. That's why I have a designated place for talking about Autism, my blog.

4) When I introduce our family to NEW people I say "I have THREE kids and my 2 oldest are on the Autism Spectrum."

5) I do not (or I guess I should say "will not" since my little guy is still just a baby) let others tell my Non Autistic children things like "You behave for your mom, ok? Because she has a lot to deal with your siblings."

6) Last but also important, I wont be asking my other children for help. It's not their job to help me with their siblings or act like mini adults. It's their job to be a kid and enjoy their childhood.

The reason people forget our baby is because he is AMAZING =) He is so mellow, ALWAYS happy and easy going. I walk into the room and his face lights up with a HUGE smile. His smiles that are often meant for me are honestly what gets me through some of my toughest days.

 We love you so much Little Man!...

This is an excellent video on the early signs of Autism done by the Director of the Kennedy Krieger Institute (an affiliate of Johns Hopkins in Baltimore). Well known for their Autism research smile emoticon She shows babies who are developing typically and those who have Autism. Family Doctors and Pediatricians receive ZERO training in Medical School on Autism making it almost impossible for them to catch it early on. They'll often tell you "They look fine!" or the most common "Just wait and see" or my personal favorite "Autism is over diagnosed" (says the man who had no training in Medical school on ASD wink emoticon ) 'Waiting and seeing' is the absolute WORST thing you can do because Behavioral Therapies have the strongest impact on a childs brain before the age of 5. These Doctors don't know this because it's not their field. If you have questions about your child or your family has questions then I highly encourage you to watch this video and share it with those family members or friends that don't understand. (9 minutes) 

Teacher Appreciation Gifts!

It's the last day of school! My little guy goes to Pre School at a fabulous Early Learning Center and I wanted to do something cute to show my appreciation to his Teacher, the Teacher Aids, his Speech Therapist, his Occupational Therapist and his Bus Driver and Bus Aid who are always so happy to see him every day! So this is what I came up with! I was told by my Teacher friends that they get tired of Mugs and Lotion so I went the Soap Route ;) Some Smelly Good Soap, Candy and Grape Pop.

"POP! POP! FIZZ! FIZZ!

oh what a great

[insert here]

You Is!!!"

I WOULD Change My Child

Let's be honest... (for 5 minutes)

At 4 am one would think that I would be trying to enjoy every second of sleep I could get my hands on. Of course I am absolutely tired but I find these hours to be the most peaceful in my house. I'm not tripping over rows of toys that my son has so meticulously lined up through out our house, I'm not rushing over to quickly throw a pillow under my kids head before they bang it on our tile floor out of frustration. I'm not de escalating a tantrum or having to rush to my daughter to take away what's left of the receipt she just scarfed down, I'm not pulling peanut butter sandwiches out of the DVD player. It's my time regardless how tired I am to reflect, to update my blog, to spend time with my husband, take an un interrupted shower that's longer than 3 minutes, to read my scriptures or to do Autism research.

I haven't been able to keep my thoughts from how much our lives have changed over these past 6 months since we got the diagnosis for our 2 oldest who happen to be 11 months apart in age by the way! (FYI: Breastfeeding is NOT a contraceptive no matter what your OB tells you ;) I was so adamant about only allowing myself that 1 week to grieve and then moving forward from there. I thought that if I grieved a minute more I would be doing my children a terrible injustice. I thought that I had to say all the right things like the phrase you frequently hear from parents in the ASD Community "I wouldn't change a thing about my child." I seem to choke on those words every time I am put in a position to force them out of my mouth because another person is telling me how sorry they are that my son and daughter have Autism.

You honestly wouldn't change your child if you could?

Well I would...in a freakishly fast second too. I love my children with all my heart but there are a few things I hate. I hate that my daughter will only let me hold her for a few seconds before she pulls away from me. That when she looks at me for the 2 seconds she can muster-she looks through me versus at me. I hate not knowing if I will ever hear her sweet little voice say "I love you mom." I hate worrying about who will look after her if something happens to my husband and I. I hate that she is inconsolable. That even as her mother I cannot calm her with my voice or my touch.

In the mornings when I get her from her bed she is usually pretty tired. So she rests her head on my shoulder and wraps her little arms around my neck as I carry her down to breakfast. That walk from her bedroom to the dining room is the shortest minute in my entire day. It's the only time she shows me affection in a single day. This is my daughter and this is a little piece of her Autism. Only another parent in my position would understand the ice cold sting Autism leaves on your heart at the end of most days.

I hate that my son screams out in agony each time he gets a hair cut and that it ends with both of us in tears. We have to schedule our appointment for when the salon closes so that people don't stare and children don't cry out of fear of my sons reaction. I hate that we have to restrain him while he screams, bites me, cries, throws up, and as his last resort as he starts to feel he's losing the fight-he looks at me with his swollen eyes and tear stained cheeks and desperately pleads with me to make them stop while all I can do is repeatedly whisper in his ear as I gently restrain his little body in my arms "I'm so sorry buddy, I'm so sorry." I hate that I inevitably worry about how other children are going to treat him (and react) because of his extremely poor social skills once he starts grade school. Kids are so mean today and parents tend to be just as bad in some cases. Tell me what decent mother wouldn't want to take this from her child?

We parents spend most days lying to ourselves telling ourselves the same 7 little words..."I wouldn't change a thing about _______" because in reality we can't bear to entertain the thought and the agonizing pain that would surely follow if we were to admit the secret our hearts possess...that we feel we've been robbed of our child and all of the hopes and dreams that immediately flooded our hearts when we held in our arms and gazed upon for the first time that tiny little newborn.

So you might be wondering how I could possibly put a positive spin on this post. Well here it is...these little babies of mine have made me a better person and I adore them. As simple as that. If there had been some sort of pre natal test that would have unveiled that my children would have Autism and I was given "the choice" (I recently read a disturbing article on this matter) there's no question or hesitation for my husband or myself. I love these little sweeties and I would choose them every time over having no children at all. They've taught me patience, how to love unconditionally, they've helped me to appreciate things that would otherwise be considered small to another parent. We don't worry about the tedious things that others our age (and sometimes a little bit older) tend to think about. Sincerely, this little speed bump has only made the connection between my husband and I that much stronger. When it comes down to it, our family unit of 5 is really all that matters to us.

(Above is our new little addition =)

Is Child with Passing Grades Eligible for Special Ed Under IDEA?

Answered at link below with the detailed laws specifying this:

http://www.wrightslaw.com/blog/?p=694

Autism After 16

A very resourceful website for those that have children a little bit older on the Spectrum.

Autism After 16