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?

 

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.

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

 

 

Back to school

I am excited for back to school … it means I will have three hours every day when the youngest is napping (in my dreams) and the older two will be in school.

My lil man, well he isn’t as excited. Actually he is terrified. He doesn’t want me to leave him, yet I can not stay. So today I took him with me to his orientation. I wasn’t sure if I was going to do this because I knew it would be chaotic and very busy in the school, but he did great! He said Hi to his teacher and it only took three verbal prompts to get him to say it! Progress.  I had a chance to talk with his teacher, even gave her the brochure about lil man, she loved it! She assured me we would have open communication from day one with daily reports. She would keep me up to date through our communication notebook, score for teacher. I also found out that my son was not the first child on the spectrum in her class … score again for mommy!

Following meet and greet we went out to lunch, he did pretty good  considering the noise level. He did however need to use the bathroom 5 times in a span of 40 minutes, I think he is obsessed with bathrooms in general. He does this whenever we go somewhere.  Lunch was not our last stop, of course it’s back to school and there is so much to do before Monday morning comes.

We had to get hair cuts (him and sissy both), new clothes, of course a book to read, some spray in hair color to make his new mohawk look über cool Monday, and finally to wallyword to get school supplies.  For any child this is a busy day, but a child on the spectrum this is insanity.

For the first time every lil man allowed someone other mommy and daddy to cut his hair. He did pretty good with it, only licked me and bite me a few times since he couldn’t get to his shirt to chew on.  We left and on the way out my mom (his Nani) told him at the end of the day if he used his listening ears he could have a toy later. Lil man does not understand the concept of later. He heard toy and that is all that mattered to him. We head in to buy his clothes at the next store and of course they have toys. Lil man fixated on getting a toy. He could care less about new clothes … he didn’t understand why he couldn’t have a toy right then. No amount of later from Nani would fix that. Over stimulated and confused, he curled himself into a ball under a clothing rack and rocked himself. After about five minutes I was able to get him out and get him on track to get his school clothes. He even picked out his very own backpack with Jake and the “LeverLan” pirates. He ended up getting a stuffed dog on the way out.

We got his book, a 3D book on sharks. No surprise there he loves fish of any kind. He still wanted his toy, he didn’t understand later meant on the way home.

Finally after a few more quick stops at various stores we went to the dreaded walmart for school supplies. Lil man was exhausted he sat in the cart. Just the noise of the wheels on the road was setting him off. He sat there covering his ears with a look of pain on his face. God do I wish I could ease this for him. I wanted to take him home, but I had to finish the school supplies. We get through walmart, he is stimming like crazy. Finally in check out he starts to screech and vocal stim, I went to put my finger over his lips and say quiet voice and of course I was bit. Seriously, did I think that this would end differently?!? After almost 5 years of this I should know right? Well no big deal. It’s part of the job. Except the teenage cashier didn’t see it this way. She decided to take it upon herself to tell my kid he was bad for it. WHAT? WHAT THE FUCK DID YOU JUST SAY? okay so I didn’t lose it. It really did take everything in me not to bitch slap this kid who wanted to dole out her unsolicited parenting advice. I simply told her “He’s not bad, he’s doing the best he can” I could care less about educating at that moment, I was worried about my son and his sensory needs. She continued with it, finally mom my (Nani) looked up at her with a look that only 30 years of parenting can perfect, told her “He isn’t bad, he is autistic there is a difference and maybe you should learn it” GO Nani.  I’m secretly doing the happy dance.

 

My kid did awesome today, no major meltdowns and he made it through when I never thought he would. He has come so far. But this is the start of new stresses in our life as he begins school for the first time Monday morning. He is a champ and I know he will do amazing, but as a parent all I want to do is help him and never have to see this look of anxiety and pain that the next few weeks will bring him.

Standing out,

When was the last time you really stood out in a crowd? Are you comfortable in that position, or do you wish you could fade into the woodwork?

 

Every time my kids and I go out in public I pray that this time will be better. That this time my son wont throw himself on the ground screaming because he doesn’t understand that he can not have a lunchable today. We just came for some milk and bread. I secretly hope that this time he wont go up to the guy at home depot and poke his belly and tell him he is fat, or that he won’t tell the cashier at target her face has too many lines and he doesn’t like it.

I wish that I could take the family out to dinner without first having to pack a bag of essentials to make sure my younger two can make it through ordering and begging the server to put a rush on the food. The essentials include:  2 iPads/2 sets headphones/ 2 fidget toys/lil girl’s blanket/and something to make sure the oldest doesn’t feel left out from my bag of tricks.

I wish we didn’t get the odd looks when our son and daughter are screeching and covering their ears because I didn’t get the headphones soon enough. The last time we went out, I overheard the family behind us complain to their server.  Because of this, we don’t go out. If hubby and I want chilli’s or something along those lines, we order it and I go pick it up.

Not all day’s are this bad, there are a lot of good days too. Sometimes the good days and the bad days are the same day. But it’s hard to feel as if everyone is staring at your family. Whatever their reason maybe, whether it’s a look of concern, companion, or god forbid a look of judgment, what I really want is no one to stare. I am already battling my own demons when it comes to these behaviors in public and most of the time on the verge of tears.

 I don’t want to stand out anymore! I want to fit in. But my kiddos weren’t born to fit in, they were born to stand out … So I stand out with them and I will do whatever I can to ease the cause of their behavior. 

 

Related content:

http://dailypost.wordpress.com/2013/08/15/daily-prompt-standout/

Finding Peace

In September of 2010 I was introduced to my second child, Buggie. My labor started out as a typical induction. I was given antibiotics for Group B strep, but was allergic to them and the iv had to be stopped and flushed as my airways began to swell. A new antibiotic was given and things progressed as would be expected. My doctor came in and checked me out then broke my water. This all happened around 1 pm. By 3 pm the nurse was calling in another nurse and they were looking at my contractions and Buggie’s heart rate, I did not know this at the time. They quickly put me on oxygen and told me to stay calm, that everything was okay. In my mind I’m thinking really this isn’t my first child I know this isn’t right and you expect me to stay calm?!? I didn’t keep the oxygen on long before I was asking questions to find out what was wrong with me and/or my baby.  In a tone that I feel only medical professionals can perfect, they calmly told me my baby’s hear rate was dropping every time I had a contraction. They called it d-cells. This mommy was not going to stay calm. My mind was racing and I was SCARED!

The next hour of my life seemed like the longest there had ever been. Not only was his heart rate dropping with each contraction, but I had stopped dilating. By the time my doctor arrived at the hospital my contractions were stronger and his heart rate was dropping lower. My doctor had to put probes onto his head to be able to better monitor his heart rate and make some quick decisions. She ordered the OR to be prepped and on standby. While that happened she worked to bring my son into the world. She manipulated my cervix, told me when to push, and when to stop. Once Buggie was out she had to unwrap the cord from around his neck. This little man was brought into the world blue as could be. I didn’t realize this until I didn’t hear him cry right away. Thank God for my mom being there. She talked me through everything and did her best to keep me calm. Finally I heard the best sound ever, my little guy cried. **sigh**

Buggie was an easy baby. He didn’t cry, he slept a lot, he ate great. Around 6 months old I started noticing that he wasn’t doing things at the same rate his older sister was. He wasn’t trying to crawl or sit up. I brushed it off as each child will develop in their own time. By a year old he wasn’t walking and wasn’t babbling. My dad and I talked about it and he thought my son might have autism. I talked to his doctor and my concerns were brushed off with “Boys develop slower, he’ll catch up.” He did, at 18 months he finally started walking but still wasn’t talking. He had no eye contact didn’t want to be held, didn’t play with his toys, cried when I had to vacuum, wouldn’t drink from a sippy cup … the list goes on.

Buggie age 2

Finally after his third birthday I demanded that he be screened by Child Find, he was and when he failed his first hearing test they stopped screening until we saw and ENT. We did, and his hearing was fine. Back to Child Find … again he failed the hearing test … back to ENT … again told he was fine with his hearing. I WAS FED UP! The system was messing with my kid and I was fit to be tied. But what did I know? We moved to a different county and our file was lost in transition (No surprise there), almost a year later we got back for a screening. Lil man was evaluated by a multidisciplinary team, he saw a developmental ped, slp, ot, and so many more. He was diagnosed with PDD-NOS. He was diagnosed as being on the spectrum. In my mind the world was over. I put all the pieces back together and knew I had to go on with what had to be done. I had to take care of things, but I was devastated. The next month was a blur of internet searching, losing friends and feeling alone and angry. DAMN IT, I WAS MAD! Then my oldest daughter had to have oral surgery on a night I was supposed to go to an autism Q&A for one of my classes.

 Little Advocate age 6

After she was out of surgery and back home with me and my mom recovering, my mom urged me to go to this Q&A for school. I remember looking at my mom with this look like, seriously mom? My son was just diagnosed a month ago this is the LAST THING I want to do!

I went, still angry at the world. Angry at what, in my mind autism took away.

Here is what I learned that night, a meer month after finding out my son  had autism. The world did not take anything from me, it just gave me a name to go with everything I already knew about my son. I remember sitting with my classmates, in front of four other moms who told their stories, bawling my eyes out. One of the moms had told me “Oh, honey don’t cry for us …” she paused, looked at me and said “You’re not crying for us, you’re accepting your new life aren’t you?”

That one statement, that one ounce of compassion from a complete stranger changed my life. That night I shared my story with my classmates, people I didn’t know. That night I accepted that there is nothing that autism took away. That night I cried and mourned what I thought I wanted for my son’s life and accepted where we were at. I became a warrior and a voice for my children.

That night, in front of a room full of strangers, I bonded with a mom and cried because I had finally found peace.

Lil Advocate, Buggie, friend

Summer 2013

http://dailypost.wordpress.com/2013/08/10/daily-prompt-beauty/

Through the window

When you stand outside my window and look in what do you see? Do you see a family sitting down to dinner with their two and a half-year old still in a high chair? Do you see a family sitting at the table for dinner and their son has headphones on and his iPad next to him? When you look through our windows what do you see? The view from the outside isn’t all that different from what any other family. We sit at the table and eat our meals together, we help our kids with whatever task they are working on at the moment. We sit down to watch movies at night for a family fun night. When you look at our family from the outside you will never see the struggles we manage.

From the inside however our world may seem out of control. We have a two and a half-year old that has to sit in her high chair during meals, a five-year old that doesn’t wear clothes. You will see a mom that makes more than one dinner because the chicken felt funny in her child’s mouth today but the chicken nuggets we have to have for lunch were perfectly okay. You may see a five-year old little boy who talks up a storm, but can tell you why he is angry so he growls at you. Or he hisses when he is upset and frustrated with the things in environment. You may hear a two and a half-year old screaming and throwing herself on the ground when she can’t figure something out, because she can’t ask for help.

If you step into our world, you may think we cater to our kids and they are spoiled. You may think that they are behaving poorly or throwing a tantrum to get their way. You may feel that I should discipline my son when he is hitting, punching, kicking, or biting me. You may even wonder why the younger two of my kids will screech and scream at random times or get so close to your face that you are uncomfortable beyond measure.

When you step inside my house, you may see a mom who covers hears when the noises are too loud or the white noise and feedback from speakers feel like nails on a chalkboard. You may find a mom who is tapping her fingers while she searches for the words to explain something she is feeling. Or a mom who no matter how much she loves her three kids, just can’t take that hug right now. It isn’t a cold-hearted mom, it is a mom who is doing her best to handle the sensory input around her.

If you step into our home, you will experience how our family is faced with the struggles of autism, bipolar disorder, ADHD and Sensory Processing Disorder. Our home, while it seems crazy, is quite normal for us. Our autism is different from other family’s Autism. It is ours and theirs is theirs. We all understand the struggles that this journey brings and we can take comfort in one another’s journeys, but each is different.

When you step inside our home, please remember the family you watched from the window is still the family inside that home. We are perfect in our unique and quirky ways.

Welcome to inside our home!