My reality

If you close your eyes are you at peace? 

When you close your eyes what do you hear?

I close my eyes and hear everything ten times louder, things are clear. 

I hear the hum of the filter on the fish tank. 

I hear the dripping sound of the water in the fish tank. 

There is a squeal coming from the bathroom as someone flushes the toilet. 

I open my eyes and see the blinding light from the ceiling fan in the room

I am lost to the images cast off by shadows of the blades rotating above my head. 

I am lost to the stinging sensation that the light brings to me. 

 

When you open your eyes what do you see? 

Does the light sting your eyes? 

Do the shadows distract you or hold your attention to the point that everything else is blocked out?

What is your visual and auditory reality? 

This is my world, would you like to come in? Would you like to join me here?

 

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Words from me to you

Dear Son,

I have watched you grow from before you were born. I have been with you through each step of your journey. Somedays I have cried tears of anger and sadness and others I have cried tears of joy and pride. Today though I did not cry as I watched you decided to pull a wall around you and your world.

Sunday morning you woke up and decided you were not going to speak. You see, for me this hurt. I wanted to scream at you to speak. I wanted to shake the words out of you. Those words are there, yet you choose not to use them. We have spent hours upon hours working to get to your words and here you are five years later locking them up inside you.

I know you don’t understand why I am frustrated right now, but I am. I hate watching you pull yourself into this world where only you know what is going on. You lose all eye contact when you do this and it scares mommy. I feel like I am losing the little boy I know when you go to this place.

I think it would be pretty cool if you could take me to this place with you. I know it’s got to be pretty amazing since you have been going there more and more these days.

Son, I know you don’t understand but Mommy misses you so very much these days. I am learning to accept that this world of yours is a safe place and that you will go there when you need to. I am learning to accept that you are not gone, rather just handling your thoughts in a way that you know how. Mommy does that too, I just don’t have any one to say “I wish you weren’t there” to me.

I can’t promise you I will always be the one who is okay with you going to your world, but I will always be the one who loves you no matter where you go or what words you decided to use and when.

So you think she wants …

Little girl turns 3 in just one short month. I’m not sure where the time has gone, but it has gone. While I will readily say she is a smart and talented little girl, I will also say I wish I could buy her a new type of gift. Selfishly I wish that like many other three year olds I could grace her with a new Big Wheels with her favorite character Minnie Mouse. I selfishly wish she had the motor skills to peddle the trike down the sidewalk like many of her peers. I selfishly wish she would not point to the same baby doll/bottle/stroller that she already has 5 of because I want her to have something new and exciting.

Following my selfish wants for her birthday I have selfish wants for her christmas as well. I want to buy her a gift that she will be so excited to open that she rips the wrapping paper off in excitement to get to her new 3 cheers Minnie Mouse. I want her to have this because she loves minnie and it isn’t  baby doll or barbie. The reality is, even if I buy this for her she may be excited for Minnie, but she will be terrified once it starts to cheer and dance and move. Honestly she may be more focused on ripping the wrapping paper into small pieces because that’s how she rolls.

Despite my selfish wants for her birthday and christmas, I will go out and get her yet one more baby doll and some more barbie dolls because that is what she loves. I will wrap her gifts in Minnie Mouse  wrapping  paper and enjoy whatever the holiday and celebration may bring.

In our world birthdays and Christmas tend to be just another day. Another day that brings too much stimulation and too many new faces in a world that thrives on sameness and their form of controlled chaos.

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. 

A mom’s thoughts

We can’t always be on our game. We all have moments that we wish we had said something different or done something a different way. Tonight, well actually today, was my day. 

Little man had a rough day. His Speech Therapist had to cancel his session at the last minute. We were already at the school when she came out to tell us she was stuck in a meeting. He shut down. Lil man covered his eyes and pressed his face into the couch in the office of the school.  Normally he is pretty good about changes in routines. The exception to this is when I don’t have enough time to let him know of the change. 

Wishing for normal …

Of course, like many other children on the spectrum, this one upset in our day set the tone for the rest of the day. It was rough. I wish I could have taken a day off from the stress that this type of upset causes. 

Wishing for normal …

While we were walking out of the school the bell rang. Both little girl and lil man covered their ears. Lil Man stopped in the middle of the street, he froze while little girl ran in the middle of the street to escape the noise.  I am only one person. I need more hands to react to each of their needs. They both were bothered by the noise, but both of them reacted in completely different ways. 

Why can’t they regulate …

Wishing for normal …

To help ease the stress, I took them to get pancakes. They love their pancakes and it seemed like a good idea. Once we got home it was constant fighting. The two of them were physically hurting each other. It breaks my heart when it gets to this point. I don’t want to keep them away from one another. I want them to interact, but I also have a responsibility to each of them to keep them safe. Luckily they started to get along a little better after I was able to get them set up with an activity. 

Wishing for normal …

After lunch lil girl took a nap and lil man laid down with me for some cuddling. It was great, except he stimmed the whole time. Then someone decided to ring the doorbell. It’s not like it was a random person, the girl I tutor has been told not to ring the doorbell because it causes the dog to bark which makes the younger two cover their ears and screech. Yet she still rang the doorbell. 

Wishing for normal …

By the time hubby got home I was tired and stressed. I wanted to check out. I needed to clear my mind, but dinner needed to done and so did baths and bed. Luckily that part went smoothly. 

Finally something normal. 

Here is where I made my mistake … I voiced my thoughts. I said what no parent should ever say. I told hubby I just want a normal. I want out of this loop of melt downs and tantrums. I told him a normal child wouldn’t have their entire day thrown off because they didn’t go to speech. A normal child wouldn’t screech because someone laughed too loud in the car. A normal child would be able to function despite a change in their routine. 

I JUST WANT NORMAL

Then came the look. I hurt my family with my thoughts. My unvoiced demons came out. I can’t believe I did that. I know better, normal is a setting on a dryer. Or so they say … 

I have normal, our day is our normal. My son and youngest daughter struggle with the same things I struggle with. I can’t blame them for not being able to deal with last minute change. I can’t even deal with it. I however am 30 year old. I have had many years of practice to develop my coping skills that allow me to function in the “normal” world. 

My children are doing the best they can, and I needed to see that look on my husbands face to realize that no matter how much stress that this life brings us, it is our normal and my kids will learn to cope in their way in their own time. 

I have normal, We do function, We do regulate, We do the best we can. 

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?