Dear Life

Dear Life,

 

I am writing to tell you to go Fuck yourself. I am sick of the bad news and everything that you have brought to my family in 2013. I am ready to see this year go and ask that you post pone any crappy things you have in store for 2014.

This year life has brought my family the news that my baby sister has cervical cancer. Like I said F you. She is 25, yes I know it was caught early and she is responding to treatment but seriously was that really needed this year? Right after the love of her life destroyed her? We, as a family, have spent the last 10 months picking up the pieces that were shattered. I have held her hair back as she drank herself sick, I have sat on the phone with her for hours telling her she is perfect and he is the one who is in the wrong. This has started to get better, only for life to hit our family again.

Three weeks ago my mom was out-of-town for business. She was in the elevator going up to her apartment and she passed out. No one was around so there was no one to catch her. When she came to she had banged up her nose, her face, knees, and hands. She fell onto the marble floor of the elevator. She did not go to the ER, instead she finished out her work week in Puerto Rico and flew home the following Friday. She finally got into the doctor two weeks after the fall. Her doctor sent her for CT scans of the brain, facial bones, and neck. They were ordered Stat.  I called her Wed to see if she got the results, no answer from my mom. Finally she and I talked yesterday afternoon around 3:30 in the afternoon. I was really confused, my mom works until at least 6 every night.

You see life you decided to kick me as I was just getting back on my feet. My mom told me that they found a growth on her brain. I couldn’t understand what she was saying, it wouldn’t process. Then she said it again, the neurologist told her she had a benign tumor growing. With tears rolling down my face I hit the floor. My knees gave out and somehow I was sitting on the floor when I had just been standing.

 

Here’s the thing life, I know it’s benign I understand that it is not cancer but there is only one way to take out a tumor … it’s called brain surgery. That in itself carries its own risks. So life, you can take 2013 and shove it up your ass. My mom is my best friend, and while we do not always see eye to eye on things and fight … I’ll be damned if you are going to kick me any more.

I’m still working through what you have brought my family this year, and I’m not sure I’m going to be okay until everything is said and done. This includes my dad having to have yet another surgery to replace his pacemaker next month.

While you have kicked me while  I am down, I will not let this take the light out of my day. I will continue to pray and know that everything will be okay in God’s hands.

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/

Mirror, Mirror on the wall …

Mirror, Mirror on the wall does this blog really tell it all? Can any blog really tell it all?

It’s my opinion that I try to keep it real and tell it all, but there are things I don’t say. I am not the perfect person or the perfect mom. This blog gives a small insight into my world with autism, adhd, bipolar disorder, and an undiagnosed daughter going though her clinical evaluations.

 

Here is what this blog doesn’t say:

It doesn’t tell you how most days I want to run away and hide.

It doesn’t tell you that I get pissed off when people tell me nothing is wrong with my kid because he looks normal.

It doesn’t tell you that I dread the first day of school because all though my son is verbal he can’t always tell me what is going on in his mind.

This happened at his last preschool, four months later he finally told me they were taking his fidget toy away from him and they were not telling me either.

This blog doesn’t tell you that I lose it with my kids, but immediately feel shame for it.

This blog doesn’t tell you that there are days I hate the struggles this life has brought me.  Those days of hate and anger are eased when I see one of my three children doing some thing that someone with a medical degree told me they wouldn’t do.

 

Does this blog tell it all? No!  But it gives you a view of what our life is like.

http://dailypost.wordpress.com/2013/08/14/daily-prompt-reflections/

 

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/

I remember

I remember meeting my first two best friends. One lived right next to me, her father was the Minister at the church I went to and her mom was my Sunday school teacher. The second lived across the street from me. I lived in a suburb of Cleveland, Ohio. With both of these girls, our parents were friends as well. While I have since lost contact with one of the two girls, I remained friends with the one who lived across the street from me. She was a bridesmaid at my wedding in 2005 and my father just attended her wedding in May. 

I look at my lil advocate with her best friend, they have been friends since they were two and a half. Even though we do not live right down the street from her and they do not go to the same school their friendship continues to grow every day. 

I took my kiddos to the park today. It’s such a different world between my oldest and my two younger children. I watch them play, but by themselves. Lil girl is oblivious to the others around her. Lil man can’t connect with kids they way lil advocate can. While we were at the park, Lil advocate came up to me and asked me “Mommy, why doesn’t Buggie have friends? Doesn’t he want them?” In my heart of hearts I know both of the younger two children want to have friends, they want to be invited to birthday parties and be included but they just don’t know how to interact. I try to use these moments as teaching moments. Today I couldn’t do it. 

This question came after I had to talk to Buggie about not pushing other kids out of his way when he wanted to get by. We talked about saying excuse me instead of growling. Of course someone laughed at him when he growled which set him off. Mommy kept her cool because these are kids and not adults, but tried to calm my lil man down. In the process of this, lil man was swinging on a bar and used that forward momentum to kick me in the stomach before flapping and growling at me. 

Today I remembered all of the childhood friendships that I had growing up and those that have stuck around through our children’s hard times. I got angry at what autism has made harder for my kids, and i mourned the fact that friendships with peers will never come easily to them. 

 

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!

venting and more

This past month has been a roller coaster and to be honest extremely tough on me. I deal with my bipolar disorder on a constant basis. Up until about a month and a half ago I was on a good mix of meds that kept me pretty stable and able to handle the ups and downs of any given day in this crazy house and life in general. Then it all changed. My antidepressant just couldn’t keep up anymore. I crashed and I crashed hard. All I wanted to do was hide away. If it didn’t absolutely, like life or death, have to be done I didn’t do it. I couldn’t clean or cook, and I sure as hell did not want to deal with any of the many doctors appointments we had to go to. I couldn’t go anywhere or do anything. Following this sinking hole of depression came the much loved upswing of mania. I could do anything. I surely thought I was super woman, an unplanned trip to Disney Sure not a problem. Taking on more children than my own, you got it! I could do it all. My house was spotless, the sensory play that came from all of this was amazing. I didn’t need sleep so my lil girls sleep issues weren’t such issues. This is the really dangerous part of my mania, all the nasty thoughts I have during the depression seem like they might be gone. Two weeks of this then again start the blinding crash to depression. In comes the SIB, the cutting came back and none of the coping methods I have were working for a damn. At this point it seems that things have stabilized with med changes and I can finally function. It doesn’t mean that a slide isn’t still looming, but it is better. While I was getting the meds straight it seemed like everytime I turned around someone was always in a crisis situation and I had to be the one strong enough to handle it.

Through all my own ups and downs, I had to deal with the needs of the kids. We had to find the preschool for them, prep for the upcoming IEP meetings, schedule more evals and line up an advocate for IEP meetings. Of course lets not leave out getting everyone ready and back to a school schedule and make sure lil advocate is lined up for her gifted testing in September.

We had the little two’s annual check ups, and while lil man has progressed so much and his achievements have shown through his struggles are masked. He is very social around adults and older children, but when he is with his peers he shuts down. Lil girl is the same way. They want to take away some of his services because in their settings he is “normal.” What the hell, not all children with autism are completely anti-social. Just because he can speak doesn’t mean he can communicate at all times. But he looks so normal! My son’s struggle with autism is just that, his.  As I type this post, he is sitting in front of the computer rocking back and forth.

The list of what he has learned this summer is long, but the list of things he can not yet do is just as long. He knows his colors, but not his numbers, He is learning what the letters look like, but can’t differentiate between upper and lower case. He can put his pants on, but not his own socks. Yet the doctors wants to take away the very services that helped us get to this point.

I want to scream and shout at them to realize, that yes we have come a long way but still have a long way to go. Seeing him the the peds office where mommy has spent a week with social stories and talking about it, is not the same as seeing him in is environment where I can not prep him for every little thing.

This past month and a half has sucked, but still I am here and I will continue to fight for everything my children need to succeed in life.