Remembering who you are

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Ohio State Marching Band

Friday night football games were a way of life for me in high school. I was the ultimate band dork! I had dreams of attending Ohio State and being part of this prestigious band that dots the “I” in script Ohio. Ultimately I did not attend Ohio State, rather I stayed in Florida to build the life I have today.

Fast forward 12 years to present day.  I have three beautiful children, I am finishing my degree in Special Education in May of this year. I have an amazing husband that supports me. He helps me find myself when I lose myself in the family roles and the delicate balancing  act that these roles require.

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Before the game

This year my mom helped one more of dreams come true. I got to see Ohio State play live and in a bowl game no less. My amazing Hubby took over parenting duties for the day so I could be free to be me. For one night I was able to go out and know that my children were being taken care of by their daddy. As I got ready I realized I was doing things for me that I rarely do anymore.  I shaved my legs, I put on pants that were not sweats or yoga pants, I did my hair and I did my make up. I left for the game feeling like a woman and not just a tired mommy and wife.

With two children with special needs and one who is as typical as can be but still needs more attention to combat the amount of attention that the younger two need, it is easy to forget to take care of yourself. It’s easy to forget that before you were a mommy or a wife you were a woman. Not only did I get to feel like a woman. I got to spend a lot of time with my mom and my sister bonding in a way we have not done in a very long time. My mom has been a strong support to me throughout all of my life. She has stood there and pulled the strong hand when she had too, even though I know it nearly killed her to do it. She knew when to push me and when to let it slide. She did all of this so that I could become the best version of me. That is what a mom does, this is the type of mom I strive to be for all of my children

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In the midst of this great night and getting to be the part of me that is rarely seen these days because of all the other roles I have to fill in, I came to a realization. In order for me to be the kind of mom my mom is, I need to take care of me. I am not just a mom, wife, teacher, advocate, friend, sister or any of the other roles I take on. I am all of these and more. If I intend to keep going at the pace I do for any length of time without burring out I need to take time to take care of me in the process.

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I’ve got my sexy jeans on, my make up done, and getting my drink

Sometimes we just need to put our make up on, a pair of nice jeans, some heals and live it up like the beautiful women we are.

Here’s to remembering to put your sexy jeans on, do your hair and make up, get your drink and celebrate being the best version of you!

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Autism Speaks does not SPEAK for HIM OR HER OR ME

I have remained silent on the Call To Action published by Mrs. Suzanne Wright …. until now!

Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house.  That is – if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes?  Climb the furniture? Raid the refrigerator?  Sometimes – the silence is worse.

These families are not living.

They are existing. Breathing – yes.  Eating – yes. Sleeping- maybe.  Working- most definitely – 24/7.

This is autism.

We are talking about the parents here. Let’s look at this realistically. It is true that many of us don’t sleep much. I know in this house sleep is a constant battle. Yes I worry every night that my children will wonder off from the security of their home, and because of that I make sure there are alarms on all doors and windows in the house. Isn’t that what a parent does? We keep our children safe no matter what it takes. That is not specific to autism, that is specific to being a parent of a child. Honestly my children stripping their clothes off are the least of my worries in the middle of this night. We are not just existing, we are living. OUR AUTISM has shown us a new way to look at the world. Our Autism is not the end all of our children’s life, it is a different path we take to ensure they succeed in the ways that they can.

I won’t sugar coat autism either. There are days I scream from the mountain tops that I FLIPPIN HATE what autism has taken from my child. Those days, days like today and the majority of this week SUCK, but that isn’t every day.

Life is lived moment-to-moment.  In anticipation of the child’s next move.  In despair.  In fear of the future.

This is autism.

I live my life in the moment, not “moment-to-moment.” Actually we have schedule and a routine that we follow. It is pretty much the same thing every day, but never the same day. If one of my children need to adjust something in our schedule or change where we are going we do it. I do ask a lot of my children as they learn to cope with the NT world around them, but I also allow them to have a “get out of jail free” pass when it is too much. Does this mean my life is lived in despair? Not a chance in hell. Do I have days where I am sad, where I cry, and scream this is not fair? Most definitely. Do I fear the future? Sometimes. I worry that my child will not be able to take care of himself and wonder who will do it. Will his older sister take care of him, who will take care of my youngest if she can’t do it herself. That is part of autism or any developmental delay actually.

AUTISM SPEAKS DOES NOT SPEAK FOR OUR AUTISM! OUR AUTISM SPEAKS FOR ITSELF! 

I speak for my children, I speak for my students with their parents, and I will not allow anyone to say my child is missing. I will not stand quietly while Autism Speaks instills fear of my child into those around him.

Will you allow Autism Speaks to speak for you and your autism?

I have taken quotes from the original post at Autism Speaks. To read the full post please visit: http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

What is autism?

Recently a blogger I follow decided to describe the symptoms of autism and how they are used in the new addition of the DSM- 5 to diagnose ASD. Here is what I will say about the blogger, she is a well educated individual. She has her PhD in sped with a concentration in Autism. She is a mommy of NT children. What she did was give the textbook definition of autism.

The one thing that stood out to me in her post was that children with autism do not have/show empathy. While children/adults/individuals with autism display emotions differently than the neurotypicals of the world, they still show it. When my son noticed me laying on the couch the other night while watching TV, he brought me a blanket and covered me up. This little boy who spends his days looking at the world another way showed he noticed me and cared. When lil girl (a point or two shy of being diagnosed) saw her big sister cry at the dentist, she held her hand and patted her leg. She saw a need in another person and offered comfort in the exact way I do.

My 3 year old daughter may not have told me “I love you mommy” yet, but she shows it. After I braided her hair tonight, she gave me a hug. When I am away from the house she waits up for me before she will settle down to rest and sleep. Part of it may be her need for routine and having me home before she will sleep, but when I walk through the door at the end of a long day and night, she yells MOMMY and I know I am loved. When my son is angry or wound tight he seeks me out for deep pressure and cuddles. Even though I may not get “happy birthday mommy” or “happy Mother’s day” I know I am loved and cared for by my son.

The common statement that individuals with autism lack empathy is a myth. People need to realize that it is shown in a different way and they need to learn and/or be taught how to see it. Our children and adults deserve to be better understood. People should know that they are more than a list of character traits listed in a set of diagnostic criteria.

Reflection from a film

When I was younger my favorite movie was Mr. Holland’s Opus. I loved it for two reasons, one I was a ultimate band geek and two it showed the Deaf community and the struggles a family went through when their child was born with a difference that the world would call a disability. 

You see at that time in my life I was extremely young and unaware. I thought I wanted a child that was deaf. I know this sounds horrible, but it is what it is. I was very involved in the Deaf community. Many of my friends were deaf, my best friend’s Mom was deaf and in my mind (like a said a very young mentality) that is what I wanted. 

This thought came rushing back to me two years ago while I sat in the doctor’s office when my son with diagnosed as having autism.

Last night when I could not sleep I decided to watch Miracle Run on Lifetime. 

With a new mindset and a different mentality I cried in watching this movie. I cried as the mom in the film received the diagnosis and had a break down. I empathized with her as she sat there saying all of her hopes and expectations for her twins had been ripped away from her. I knew how she felt when people she loved in her life walked away because of autism. 

What I loved most about this movie is that this mom fought! She fought hard for her two boys to grow in their own ways and at their own pace. She never gave up. She learned the laws and the legalities that ensured her boys had education. She even started her own foundation for autism. 

The movie was based on one family’s real life experiences with autism, from diagnosis to the boys being in Gen Ed high school and applying for college. 

When I was in high school and had a very young mentality I had no clue what I was in for. As an adult I still don’t know what all life will bring for my lil man or lil girl who has her own set of challenges, but I do know that I will never stop fighting for their rights. I will never allow my hopes and expectations be lowered by their labels. 

In today’s world we must still fight for our children to receive equal and appropriate education, but it is a fight we must never give up on or we are giving up on our kids. 

Green Eyed Monster

I’d say we are all friends here. Here is where I share my biggest joys and happiness, it’s also where I share my fears and disappointments. Tonight I am going to do just that … Share.

I have been extremely happy with the progress little girl is making with her language. I’m over the moon and I am not in anyway negating the joy I have for this situation. But I am jealous. I’m jealous of the little girl who just turned two and is speaking in clear three word sentences. I am jealous of the kids in Lil girl’s preschool class that are younger than her. Those that don’t regress in their behaviors, those that clearly speak their wants and needs. I am jealous of those moms who understand their beautiful little child and don’t play guessing games as to what they want.

I am angry at myself for not understanding her all the time. I am angry at myself for not always knowing what my very verbal son wants. I am also jealous of those families that are not worrying about if their child will run off on them and disappear while trick or treating. I am jealous of that family that can go with their child and not have to have one adult per child because two of them may run off and end up in a lake or hit by a car or taken by a stranger. I am angry that I am jealous because my children are progressing and I watch them work hard to get to their best self. I am angry at being self centered when it is the kids who have to battle this battle daily and they are happy.

I am jealous and angry because my oldest needs more attention than I can give her because her brother and sister are always in need of something.

But most of all I am an emotional wreck that just wants what is best for all three of her children. I am an emotional wreck that wishes I was more grateful for the progress and growth and a little less resentful at the hand of cards my life has given me.

I am a human being and I am a mom …

Words he didn’t say

Many times I tried to understand my son. I cried to hear him speak and then he spoke, but the words still did not bring clarity to me or my family.  After a year and a half of my lil man using words to communicate we have finally started to understand his meanings, not always but most of the time. We know when he says “so and so was bad to me” it means someone hurt his feelings or didn’t give him what he wanted. We know when he says “i no get no food” it means he is hungry. But the world does not know these things. The world does not understand the way he communicates. 

The world just doesn’t understand. 

Even though I do understand there are many things I still do not understand. 

I want to understand!

Today I got my chance to understand. I should have known … but I didn’t. I’m his mom and I did not know. How is it that a mom just did not know what her child was trying to say for so long. 

I missed it …

We were outside today playing, he invaded my bubble. He just wanted a hug but he came into my bubble. I know this sounds horrible, but it’s the truth. At the time I couldn’t have anyone in my bubble. I took a deep breath and gave him a hug. Then I went to tickle him. 

I learned something new today.

He said oww, he pulled away, he walked over to a tree and sat down with his head hidden in his arms.  How did I not know that tickling him hurt. How did I not understand that for his mind and body tickling is painful. 

I feel helpless

I gave him his space, let him regulate and then went to pick him up. He let me wrap my arms around him and make it better. He needed me to understand, he needed to have that moment. Afterwords he told me he doesn’t know why it hurts, but it does. It makes him feel bad when he is tickled. 

I understand …. mommy understands … you are not alone

 

 

The change we need

So I just got home from a very long day. Lil girl had her eval, posted about all of that earlier, then had school. So here is the thing I am extremely happy to find that lil girl’s intelligence is through the roof. Here is my struggle, she is one to two points too high for other services. They recommended that I go back to my pediatrician and request referrals for private evaluations for speech and OT. She attempted to line up every toy they gave her, but the examiner stopped her. When this was pointed out I was told that it’s okay because she was lining up colors.
When I pointed out that she imitated everything the evaluated did including the words that went with drawing a circle (examiner said “circle, circle, circle” while drawing a circle … lil girl with a crayon in her right hand still coloring took the lady’s crayon and drew her circle over the lady’s saying “circle circle circle”) I was told that is what they wanted her to do.

I was told that her intelligibility is not a concern at 34 months old, because she gets her point across with her limited vocab and through hit or miss pointing. She is understood enough for them to consider it “acceptable”

I was told that i need to work harder at getting her to use a fork and spoon when eating because she has a great grasp for coloring. I try with the fork and spoon but I am sick and tired of being hit by the fork thrown at my head. That is what happens if I have her use a fork. But if I don’t give her one on her plate I have her food thrown at me in frustration.

She is potty trained to an extent. She will not go to the bathroom on her own. She would rather wet herself before going alone. Other times she will simply pee where she is sitting/or standing without regard to the need to go.

She socializes with adults, but not peers. Her socialization was scored low because of this. They don’t know what to recommend because I already have her in preschool part time, and take her to the park and other venues where she can interact with children her age. She just wont.

The evaluated told me “She has no regard for danger.” This was not a question, this was a statement from watching her stand on the chair and not care that she was falling off of it. This was watching her do it again and again with the same results. This was her sticking her hand in my hot coffee without regard to it being hot.

She can not show the difference between a boy and the boys when shown a picture.

Yet I am left with the statement “We are sorry she does not qualify for services, you must go back to you doctor and request private evaluations. Or you can wait until she is three and go through Child Find”

You see here is a child who has dx of developmental delay. She is high functioning, yet too high functioning to actually receive help. This is where the divide in our community comes in. High Functioning vs Low Functioning … we each battle our own demons. We fight the same fight. If we were to band together and raise our voice as a unified community how different would our world be? How much could we change if we looked at it from all sides of the table?

Having a high functioning child is kind of a double edged sword. You know your loved one struggles yet you are not eligible for services. Having a low functioning child is not any better. Your loved one requires more help for their struggles than our system provides.

When will we demand a change for our loved ones? when will we be given the chance to give them the best life regardless of their functioning level? When will we see, within our own community, that our end goal is the same? That all we want is what is best for our loved one?