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.

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 =)

And the Day Has Arrived...

I knew this day would come. I guess it's finally here! Now that my son and daughter are starting to get older people are starting to recognize something is different about them when we go out. Between my daughters spinning, clapping, flapping her hands and her noises that she makes and my sons random screaming episodes and banging his head on what ever he can find when he's frustrated people are starting to stare at them every where we go and then look to me like I'm a bad parent and my kids are brats because they don't know what Autism is.

We took our kids out for frozen yogurt yesterday and my son does ok at restaurants if I let him sit and play with silverware. He takes all of the forks and spoons from the table, puts them in a pile and starts to rummage his hands through them repeatedly. Stopping on occasion to grab a quick bite of food from his plate. Amidst all the "clinking" and "clattering" the silverware was making the woman at the table next to me would briefly look away from her family to throw us a dirty look as if our kids were ruining her lunch. It breaks my heart, I'm completely not used to this, to people acting like this towards me. And I live in Utah!!! Mormon land! Where everyone is sweet and smiles at each other (unless you are driving on I-15).

So I'm ordering them toddler t-shirts that will be strictly their "grocery store t's" or their "going out t's" if I know we're going to a sit down place. Here is what they say:

Shirt 1) "I'm not Naughty, I'm Autistic."
Shirt 2) "Discipline wont cure my Autism."
Shirt 3) "Spanking wont cure my Autism."
Shirt 4) "It's not bad Parenting, it's called Autism."
Shirt 5) "I'm not a spoiled brat, I'm Autistic"
Shirt 6) "Yes I'm Autistic. Stare if you must I'm not paying attention to you anyways"

The Super Cool Way To Watch TV

She loves to be 2 inches from the TV with her legs up! She is such a little hoot =) Thankfully studies show that computer screens are bad for our eyes and not tv's! =)

Our Diagnosis Story

You never forget the day you get the diagnosis.

Around the time our son turned 18 months my husband and I started to notice changes in him, regression in his motor skills. Here was a little boy that had started walking AND talking by 8 months of age, had a growing vocabulary and an extraordinary memory. Then one day he started running on his tip-toes with his head turned side-ways instead of the direction he was going in, adapted certain security toys that he had to take everywhere with him, bathroom, dinner, errands and to bed. He started to not like certain textures (stickers), hated for his hands to be dirty or wet. He was lining up his toys versus playing with them. We started to notice he couldn't say words that he used to say all the time, his vocabulary was practically cut in 1/2, he could no longer walk down the stairs (something that we had to re-teach him at a later age) and he was having trouble feeding himself with utensils-something that he had already knew how to do. Not to mention his social skills with other children just weren't there. People would tell me when I suggested I thought he was showing symptoms that I should "wait and see" (the ABSOLUTE WORST thing you can do for a child with ASD because the SOONER you get them help, the more chance they have of reaching a high functioning outcome.)

After almost a year my husband and I were able to find the right people to evaluate our son for Autism. We moved and fortunate for us where we moved to had an Early Intervention Program that serviced the county we lived in. They do a series of evaluations for free.

The program we were set up with had a team of specialists that came out to our home 2-3 times a week for 3 hour visits over a month’s period. Our kids didn’t even know they were being evaluated. As far as they knew they were just playing with new toys and occasionally answering a question. As the testing progressed I could tell it wasn’t going well.

I tried to keep my emotional composure as she began to explain to me that not just one of our children had Autism but both of them did. I had NO idea that she was evaluating my daughter as well. We had suspicions with our son as we would watch how he played and interacted with other children. People would frequently tell me “Oh he’s fine. He’s just a boy!” or that he just had an abundance of energy but I always felt it was something more. Our daughter on the other hand was almost 2 and still didn't speak a word, wouldn't make eye contact with anyone nor respond to her name despite her hearing being great. We were so focused on the issues we were having with our son that we completely over looked our daughter’s lack of development. I had always made excuses that she was just a late bloomer.

At first I started to do what I think any parent would do and that was wonder if maybe it was something I had done wrong during my pregnancies. However we were told that studies are starting to show that Autism is around 90% DNA related (genetic). It doesn’t run in my family but it is common on both sides of my husband's family. It wasn’t Vaccines because I was that parent that refused them out of fear of Autism. As my thoughts began to progress down this path they were all somehow pushed out of my mind and I was left with only one: It didn’t matter what the reason or cause because things were going to be how Heavenly Father intended them to be.

When the Specialist left I sat down on the couch left with my thoughts and began to watch my children play. I couldn’t help but feel a sudden abundance of love and appreciation for them fill my heart. I think I knew in that moment as my son looked over and smiled at me that they aren’t just my children but Heavenly Father’s as well and He has trusted my husband and I with the sacred duty of loving them and caring for them.

I put my kids down for their nap and went outside and waited on the steps for my husband to get home from work. He pulled up in the drive way and without saying a word he sat down beside me and put his arm around me. As most parents that have been in our place, we took the news hard at first. Me more so than my husband, I think I cried for about 3 days. My husband and I agreed that we would allow ourselves 1 week to grieve and after that there would be no more grieving that we would then take this head on =)

I later called my family and my mom’s response was comforting after I told her. She said “You guys aren’t on your own. We’re going to work through and handle this together as a family.” At first we were sad because you have this idea about how your children are going to be and the things you will get to do with them like sports, marry them off, send them to college, shopping, finger painting, dance and family vacations. Then all of it comes to a halt in a moment. But every time I began to feel sad it was like a blanket of comfort was thrown over me. It felt as if Heavenly Father was present on each occasion. After some time went by and all the crying was done I realized that my children will still get to do all of these things, that we would just have to take a different route than other parents. I think sometimes parents will get this diagnosis and feel like all is lost and then put it on the back burner and not seek the help their children so desperately need to reach their full potential. They ignore it and think "it will work itself out." But that's not the case and all is not lost.

My husband and I have a good strong marriage and a wonderful relationship with each other. We are currently in the process of moving to another state to get the therapy they need. So having a strong marriage, love and patience in our home and getting them the help they need is the absolute best thing we can do for them. Right now we live in Utah <---#48 worst US State for Autism resources. So for the past 2 months we have been making a zillion phone calls to different school districts across the country, Autism research groups, talking to parents of ASD children through out the country, calling different insurance providers and as of right now we narrowed down our search to the great state of MISSOURI. There my husband will be able to finish his degree, my children will have insurance (our insurance provider dropped both of our kids for being Autistic-too expensive for them, cheap state), my husbands job is also going to transfer him and our kids will get the ABA therapy that they need. Only certain states in the US provide it. Many families with ASD children will move across the country to a state that provides this therapy. Missouri is also the Autism research capital in the US. Columbia University is currently pumping out 10 Autism studies alone and that's not counting the ASD studies going on at the University in Kansas City Missouri or the studies coming from other ASD centers in MO.

Our daughter is still and will always be our perfect, cute little comical Curly Sue who is a daddy’s girl.

Our son will always be my little sweetheart who showers me with hugs and kisses and favors me more than he does his dad ;) We wouldn't change anything about these little guys.