Thursday, January 31, 2013

'Tis the Season for Your Meeting

'Tis the season for your meeting....

So here we are in that time of year that all of us super parents dread. I........E.......P........MEETINGS. Most of us stress probably way to much because if you really think about it, there is only so much you can control. I found myself in a routine of "behaviors" if you will, before my meetings. So here is what I do, maybe it will help you :)

A few days before I listen to calming music all the way through until morning of the meeting.

I also say as little as I can to Super Daddy, bc when tension is high it is very easy to get into a blow out (about nothing)

In our experience every meeting, Super Daddy and I feel it is best to have 1 parent as the dominant speaker and the other parent chime in when necessary ( it is always me, he is moral support)

I gather my thoughts and write down what I will say, believe it or not, I practice in the shower

I pick out a recent photo of the boss lady to bring to the meeting, so they can put a name to her face

I always speak to her current teacher and therapists so we are all on the same page

I bring every packet from the previous meetings with her diagnosis and other valid information (this shows preparedness and efficiency on the parents part)

I always read up on up to date terminology and try to speak as clinical as I can but still stay grounded as a mother speaking of her child

I love to look up quotes that inspire me and affirmations, I feel this gives me strength and confidence

Every meeting I have been to, I wear red, in 7th grade Mr Corrado my social studies teacher said red was a color of power and I do it, and so far so good (knock on wood)

I bring a coffee or water, it inhibits me from tapping my pen, twirling my hair, or doing any other nervous quirks

I always shake the hands of everyone in the room as I walk in esp the head honcho at the head of the round table ;) a firm hand shake and some eye contact shows you mean business

I always walk in as optimistic and light hearted as we can be, to set a positive energy in the air

I try not to go in on an empty stomach so my brain is firing 

While waiting to go into the meeting I sing a fun song in my head to relax my body and detach so my anxiety level stays low

While talking about the Boss I make sure I address everyone around the table and try not to look down too much on my written prepared speech

If things get heated and there is a sense of conflict, Super Daddy reels me back in by either lightly touching my leg or giving me a positive glance

When the meeting ends we always thank everyone who was there and close with another nice firm hand shake.

I hope these things help you or give you a sense of strength. You are all so strong and marvelous. Being an advocate for your super kids can be so hard. I wish you all the best of luck in your meetings this year and your future meetings to come. Always have faith, courage, and love in yourself and you will be the best advocate you can be.

"an act of courage is always and act of love"

Tuesday, January 29, 2013

Make Room for ASD

There is something I have wanted to write about. But every time I start to I feel like I may offend people in the special needs community. I feel as if I am complaining about something I shouldn't. There is the typical world and the atypical world. And we are a minority in both. We have one foot in the typical world and the other in the atypical world. Do you know what I am talking about? Autism, pdd-nos, Aspergers, verbal ASD children.(these all and many others apply)

Boss Lady's disabilities are not concrete if you glimpse into my world for 3 minutes on a good day you would not suspect a thing. If you glimpse in on a bad day you would see what I was talking about. This may be an internal thing, but I feel like there are times I have to prove Boss Lady's Autism to people. You may think this is demented or berserk but there are times in front of a certain company of people, I feel a sense of relief when her behaviors peek through. SICK RIGHT? I think many parents in my position feel the same way. I am a bit conscience stricken of this feeling. It is for the people who tell me she is fine or JUST DO NOT GET IT.

I am tired of the school district saying "But she scores so high cognitively and is verbal" That is probably one of my most hated things said to me. I can not even celebrate my daughter's brilliance because her scoring high cognitively means she may lose services. So a part of me has to be concerned if she is scoring too high. Before she was diagnosed she actually lost special ed services because she was "scoring so high", let me point out she still was not answering to her name, she was not pointing, and she had a lot of other issues. But because the monthly test, that is not designed for all children, said she was cognitively FINE. Yes she could list ever color,shape, and identify numbers and letters. The picture was bigger than this and still is. Why aren't different tests devised for children like her? It does not make any sense to me.

There is so much more to ASD than cognitive functions. There is behavior, motor skills, social skills, sensory processing disorder, which is not even acknowledged as a true disorder. Yes she scores high cognitively because part of her Autism is a great memory. They are little tape recorders! She retains a lot of information, but a lot of this is just spitting out the recorded information. The amount of absorption is unknown.

I was at a birthday party recently and a mother of a typical child, who is in an inclusion class with a handful of children that are on the spectrum, tells me that the Boss does not look autistic and I should not tell people she has autism. I am not ashamed of her or her ASD. Right then and there I realized there is so much more that needs to be done with in the ASD community. These kids are being misplaced in schools and schools are not educating the parent population or the typical children on ASD. It's a hush hush topic. We are not allowed to be proud or open about our ASD kids in the typical world, but the school districts forces ASD kids into inclusion classes and into this world. The kids on some occasions get bullied or the regular education teacher does not handle the ASD child properly and the child "explodes" and then is sent back out of district. 

Now the child is in a school for special needs, and she begins to score high cognitively in her new school. She has no visual disabilities. Other parents wonder, why is this child even here? She looks totally fine. and so on. I feel unpleasant even opening about this and I feel bad comparing myself to a mother who has a child who is severely disabled. Why should I complain, sometimes Grace's issues seem so much smaller to me in comparison to many in the special needs community. I read a blog by NT mom, and I identified with something she said. She explained how ASD is on the outskirts of the special needs community. Where do we stand? Where is Grace's place in the world?

There is a continual battle for us on this part of the spectrum. I am always wondering what is best for Grace. Second guessing every decision I make for her education. I have to fight for her and her diagnosis, especially when I am in the presence of uneducated people. The numbers of ASD are rising but for some reason the awareness level is so trying. If the school districts want our ASD children in district they need to not only educate our children but educate everyone else who will be around them. Our kids work so hard endlessly each day to cope with our world. Is it too hard to ask for the Typical world to work to fully understand and accept the ASD world? 

"What you deny or ignore, you delay, what YOU ACCEPT you conquer."

Monday, January 21, 2013

I have been meaning to write you

Dear Sibling,

I have been meaning to write you. You see I am a sibling just like you. But I am all grown up. I am writing you to let you know it is OK to feel sad, upset, frustrated, jealous, or anything you feel. Trust me I have been there. Do not let those feelings take over what a beautiful person you are. Feel them, identify them, accept it and move on. You see sibling, you have been chosen to do one of the most special jobs anyone can do on this earth. You are even more special than your parents. You have a heart made of gold, a soul full of patience, and a mind that can take on the world.

God has chosen you to be the light of your family. You may not know this but you are the one who holds it all together by just being you. The little things you do for your parents, the way you help them. How you have instincts and intuitions like no one else. Sometimes things for you have to be put on hold. This can hurt, I know. But it is because you are strong, you have strength deep inside of you, that you do not even know you have. Trust me it is there, and you will feel it when you need it the most.

Please know your parents love you more than you can even imagine. They also feel so blessed to have you. They feel lucky to have you and they barely need to worry about you because they know how incredible and marvelous you are. You are capable of anything so grab life by the horns and do great things. Anything you do in your life you will shine because of the path behind you.

Always love your special brother or sister. Always show them all of the care in the world. Always guide them. Always protect them. Always be there for them. If it ever becomes too much sibling, which it might, talk to someone. Never be afraid to express your feelings. I am always here for you sibling, I have done this before and if you need help I am here for you.

In your adult life you will notice people sweating about the small stuff. You will laugh to yourself and say, "if they only knew". You will have this way about you, where bad stuff will happen and it will be easy for you to move on from it. You are ahead of the game and always will be. People will admire your journey and your strength. The way you will love and feel is magnified and for this you are lucky. Never lose this part of you. Shine on sibling, shine on. I promise you it will get easier. I promise you.

Love Always,
Another Sibling

Candy Land

Candy Land. Who didn't love playing Candy Land? It's the starter board game. One of my great memories as a kid was board games with my parents. It was one of the few times it was just them and me, and we were so carefree. I was always the top hat, my dad the race car, and my mom the thimble in the famous game of Monopoly.

Between The Boss Lady's obsessions and difficulty transitioning and taking turns board games are on the back burner. She is going to be 5 in a few weeks. I figured it was time to attempt Candy Land for the 30th time. In the morning I spotted the box. We have 2 Candy Lands, one is destroyed because she loves to cut and color the cards and do God knows what with the ginger bread pieces. I had a plan that we would eat breakfast and then maybe start talking about it. She did not want breakfast, so I gave her a shake and she drank it in bed.

"Mommy I want to plway angry biwrds on my IPAD" I gave her IPAD. I sat next to her and tried to interact but she wanted no part of me. I am never this sensitive and understand she needs her space. But I began to cry, and as I cried she scripted Angry Birds and did not take notice to me feeling sadness, which made me cry more. I went into the kitchen and tried to snap out of it. I heard Ninja Turtles come on the Ipad. I am embarrassed to say I pretty much let her stay on the Ipad until lunch.

Lunch time came. I was trying to muster up some energy to talk about the stupid board game that had taken up half my day already. But I didn't. After lunch she ran to her desk and did her cut coloring and pasting routine. I surfed the internet and watched some TV. I could not understand why on this particular day I was so upset about her not wanting to interact with me on the level I long for her to be on. It has been like this forever. The whole day I just became angrier and angrier.

It has been a whole process for me. The steps of emotions. I guess like a grieving process. Maybe I am up to anger? I am just so angry that I can't play barbies, doll house, or candy land with my 5 year old. How, if I introduce a board game the pieces end up flying every where. I am angry every time I need to go somewhere where everyone else has 1 step we have an added 10-20, to complete that 1 step. I am angry that my daughter does not care if her hair is brushed or if she is wearing a dress or a potato sack. I am angry my 5 year old wears a harness on the bus. I am angry that when I cry next to her she doesn't understand to notice. I am angry that at 5 years old she has all of these demands put on her each day at school. I am angry my daughter punches, hits, and scratches me. I am angry that my daughter is angry a good part of her day! When I see Moms with their daughters, I become so jealous. Don't get me wrong, Grace has come a long way, but I still can not help the way I feel.

The rest of the day I kind of just drifted through and detached. I hate when I do this, because I feel like The Boss is getting the crappy end of the deal. It is not her fault. It is stupid ASD. Today while straightening up I kicked the Candy Land Box as hard as I could, I then put it in the garbage. This may seem childish to you, but in a way it helped me free myself. I felt liberated from that anger that swallowed me up the day before. And now I am sitting next to my Boss Lady and watching her script color, cut, and paste.

“Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns it all clean.” 
― Maya Angelou

Check out the NT MOM she has a super kid and 2 more <3 she coined the idea of us parents doing 20 steps for every 1 step everyone else does <3pieceloveautism<3

Tuesday, January 15, 2013

Please Don't Take My Sunshine Away

"Sunshine you are my sunshine, you make me happy when skies are gray..."

"Mommee sing again pwease in the wegular voice no qwiet voice pwease"

I sang it in a regular voice and the boss was out. What a long day. We went to a new neurologist today. The Boss is going to be 5. Super Daddy and I always knew that down the line we would be faced with the big decision of medication. We agreed when she was almost 2, we will wait until 5 to talk about it. She is going to 5 in a few weeks and I am no where near talking about it.

The neurologist was amazing. I have met my fair share of neurologists between my childhood with Billy and Grace's adventure. A good one is very hard to come by, in my opinion. But this guy was on the money. When he entered the room he quickly hushed me and wanted to get to know her before he heard anything I had to say. Which I loved. so there was no biased opinion formed. He played with her and examined her. He had such a way with her, such efficiency.

Neuro appointments are so hard because this is the doctor where you talk mostly about the negatives, the child's down falls, the child's delays. It is scary that after a while it becomes so natural to say and list what your child can't do. And how saying "she is extremely aggressive and violent" can just roll off your tongue. Luckily Boss Lady was herself, so he got to see the true Boss.

When he examined her he touched upon her having a delayed reflex and very low muscle tone in her arms, hands, and trunk. I have stopped telling physicians this because it is always attributed to her ASD and her Sensory Processing Disorder.(so I gave up being heard in that department) But he had little concern and suggested looking into it. I felt validated which was awesome as a autism mommy. After his full examination we talked. A two way conversation with a neurologists, something I never experienced before.

He spoke about her being highly intelligent, but we can only get a small glimpse of that because she is so impulsive and can't focus. He thinks she is scoring lower cognitively because she has so much other transactions going on in her mind. He told me he wanted to run every blood test to rule everything out. Everything he said made so much sense. Then he said "Have you thought about medication?"

My heart stopped. It was time. He then went on about how school demands and curriculum will get harder and as he spoke my memory rewound all the way back to the beginning, it was Super Daddy and me at our kitchen table saying "Let's try everything first and we will use medicine as a last resort" In saying that sentence I really believed we would never get here, because I was convinced something else was going to work. I snapped back into the conversation as I was blindly nodding along. Just in time because he was asking me, What do you think? My heart said I agreed but I am very scared. My educated mind thought about side effects, chemicals in her body, the rate of adults who are drug dependent because they were on meds as a child, every statistic raced through my mind. He saw I was very uncomfortable and backed off, which was a good judge of character. "Ok let us come back to this in 2 months", he said. He wrote me a prescription for the extensive blood work and we were on our way.

So here I am 2 days later still not ready to talk about this. I have showered Grace with gifts from target out of guilt and let her color on the wall and eat a bowl of raman (she is gluten free). Last night I punched out of Mom duties and it was a free for all after 7 pm. I need to face reality and make a decision. The honest truth is we have tried everything under the sun and even the moon. Nothing has worked. Yes many of the things I have modified in her life has made behaviors improve. I fear medicine will change who she is, having her be dependent on a chemical substance that is suppose to fix her because she is broken. If I give her meds am I admitting she is broken? Just the idea of the pill pulls a lot of feelings and emotions to the surface. How did we get here? Should we have done something different? I just can not believe we are really down to the last resort.

"'ll never know dear how much I love you, please don't take my sunshine away"

Saturday, January 12, 2013

Failure is not Fatal

Falling short. This is something I battle with on a regular basis. In our journey we come so far and we fall short on many things. As many of you read on my page I was weighing out pros and cons on administering Boss Lady with the flu shot. I do not have to get into why or what made me end up getting her the flu shot, but I DID. I went with my gut instinct and somehow I let the media get into my head. It has been reported 20 children and counting died from the flu this year, and if you live in a community hit hard from the Hurricane you should really consider it. That combined with her horrible asthma, I was sold on the idea. As a mother there have been many occasions where I went with my GUT and it was the wrong answer.

I was apprehensive about even writing about this because of how people may perceive my choice whether good or bad and people saying in their heads "I told you so." I am in my own head "I told you so".

Yesterday, the school nurse called, when I saw the caller ID I knew instantly there was some reaction to the Flu vaccine. Here we go, I said to myself as I answered the phone. "She has a 102 fever, you have to come and get her...." I did not hear the rest as to my mind was racing and the guilt of harming my baby fell on my shoulders and my chest. I hung up the phone and ran to the car. I quickly called Super Daddy in tears. I KNEW IT I SCREAMED WHY DID I DO THIS TO HER THIS IS ALL MY FUCKING FAULT IM SUCH AN ASSHOLE IM SORRY ERNESTO IM SO SORRY! Thank God for Super Daddy he has a way of reassuring me and making me calm down and feel better, "You did what you thought was right amor, I love you, its ok, please stop crying, I love you, you did nothing wrong, call me when you get Grace"

I got to the school in a panic, I saw my girl so out of it unable to even fight not wanting to go home, She was scripting away, Monsters Inc. She felt so warm and looked so sick, and fell into my arms, melting into me. The psychologist walked us to the car. The whole way home I must of looked in the back seat 300 times. "Howld my hand mommy" she whispered from the back seat. I held her hand the whole way home as I drove. When we got home she was in that fever induced sleep. I carried her and put her to bed and just watched her. She got up periodically to drink juice. She did not speak for a few hours and with ASD and The Boss when there are no words, It is the scariest thing! Later in the night she got up for an hour started talking again, and ate a whole bowl of soup.

I stayed by her side the whole night waking up to check her temperature, put a cool rag, and give her some juice and motrin. Her fever is higher than it was yesterday and she has been vomiting. She has been in and out of sleep and wakes up for juice and some YouTube. I have not left her side the whole day. 

Was it wrong to give her the flu shot? Maybe? Was she already getting sick? How would I know she never can tell me she is not feeling well? Is this a reaction to the vaccine? Possibly. Would she have gotten the Flu worse than this reaction if I didn't do it? I don't know?

As super parents nothing is mapped out. We navigate this journey on our own. A new therapy comes out and you hear about it, and a little voice in you says "this is going to make it all better", but then the bigger voice brings you back to reality and says, "come on no it's not". But you still want to try everything and sometimes when you do try things it can bring harm or regression. When this happens the guilt is sometimes unbearable. It is a constant game of roulette and trial and error. But at least you tried right? I hate feeling through this whole process that many things are my fault. I wish I can free myself from this feeling. But as I sit here watching my poor lil Boss with a 103 and so sick looking, how can I tell myself this was not my fault. It is my job to protect her and make sure she gets everything she needs, and I failed her. This is not the first time I failed her and won't be the last. There are days where I go to the extent of blaming myself for her ASD, as I am sure many super parents do.

I was hiding this from everyone because I know I may have made a mistake. I felt ashamed. We all make mistakes. I should not worry about what people think, because I know I love my Boss Lady and would never do anything intentionally to harm her. So in times when we fall short in an adventure we learn and move to the next adventure.

"Success is not final, failure is not fatal: it is the courage to continue that counts"

Friday, January 11, 2013

simply TRUST

(verb) believe - confide - rely - credit - hope - entrust
It's just a word to many people. But to me this word goes further and deeper. Since Boss Lady was 15 months old I had to learn quickly to trust complete strangers. Day after day they would enter my house and sometimes work with my daughter behind a closed door while I pretended to Windex and dust, but would eaves dropped at every chance I got.
The Boss Lady is extremely verbal, maybe too much. The scary part to this is, when she is in pain or in distress she does not express herself appropriately. I have seen this first hand. We went to the McDonalds Play Place and I watched 5 year old girls push her out of the way and she did nothing. My jaw dropped to the floor a long with my heart. The Boss punches me if I do not list the Ninja Turtles characters in correct order according to their color head bands. Why didn't she stand up for herself?
When the Boss Lady is ill, I have no knowledge until there is site of a fever or I just have a gut feeling. She is the kid bouncing off the walls singing and playing who goes to the doctor and has strep and a double ear infection. Why didn't she tell me her ears or her throat hurt? It blows my mind how she is so verbal but when it comes to emotions there is a block.
With this significant delay, as a parent and many parents like me I have to rely on so many people. From the moment she leaves the front door, I have to put my faith in people I barely know. Her first steps on the bus each morning as I hand her to the matron and say good morning to Mr Sal (her bus driver), the bus pulls away and she is with them for an hour until she arrives at school. She then arrives at school and a staff member, (could be a different person each day) brings her and another child to their classroom. Her day is filled with private therapy sessions with therapists and classroom activities with her teacher and the assistants, gym, soft gym. Then she is walked to the bus at the closing of her day with another bus driver and matron for an hour bus ride home. She has been doing this since she was 3.
These amazing people make sure my Boss Lady is safe everyday. When you sit down and really think about it, it is kind of challenging to wrap your head around. It hurts and terrifies me that she can't tell me if something bad has happened to her. I have learned it is better not to sit down and really think about it because you will drive yourself crazy. You need to hold on tight, deep breaths, let go, and simply TRUST.

Monday, January 7, 2013

Just Know You Are Not Alone

2 years after The Boss Lady was diagnosed everyone slowly evaporated out of our lives. Did we just become too wrapped up in Autism? I don't know. But I found myself having a hard time relating to people who I found dear to me. I would get so tired of the, its going to be oks, why don't you try this? Don't you think all of these therapies are too much for her, she is so young? She is fine you are over reacting. Are you sure she has Autism?  Bringing her to people's houses and feeling their anxiety of her having to touch everything. Telling someone she cut her own hair, and hearing well you should hide the scissors, how would she get the scissors? Feeling judged for letting her do something a typical child would never get away with like, pulling every napkin out at the pizza place or sitting under the table while out to eat. The one thing that is said to me that I know is coming from a good place, "I don't know how you do it". It hurts because it is like I am being told sorry your life sucks, how do you deal with that. In all honesty I do it because I was meant to do it and I could not imagine doing anything else.

My way of life became so different. I did not feel like going out even if I had the option to, because I was the only one who could get her to sleep. Explaining, I have to be there at dinner time to make sure she eats enough or to brush her and do her joint compressions. Telling people sorry we don't do Kohls, we don't do the mall. I have to cancel because she had a difficult day or she only slept 3 hours a night for the past 4 nights. I felt like a let down every time I cancelled any plans. Many of the people in my life could not relate. I don't blame them. Some could not understand that I want to be there for her every chance I can because she depends on me, and needs me there for her routine she craves. Some can not grasp that even though it is tough I enjoy caring for her. But this is my life now. Strips of velcro lined my wall, a trampoline in the middle of my living room, marker and crayon on my wall, Grace's creation of the week on the kitchen table, For a while I felt alone. I felt isolated. Then I did something I never thought I would do. I joined Mom's Group at Boss Lady's school!

It was a Tuesday, the first day, I walked in nervous and skeptical. What can a group of Moms really do for me, we talk about our lives blah blah blah go home and be more sad. They all came in, most of them with a smile, but the whole story on their face. All from very different walks of life, which makes it more unique. They went around one by one introducing themselves and speaking of their child's or children's disability. One by one talking about their children with such dignity, power, pride and faith. Each mother moved me as the words left their lips. By the time they were finished I was so empowered by their strength to tell me, a complete stranger in depth about their Super Kids. After we went around, the conversation just flowed naturally. It was beautiful and each Mom beautiful in her own way.

The week after the morning of Mom's group, Boss Lady refused to get dressed, missed the bus, punched me and threw things at me and we were going on no sleep. I drove her to school and dragged myself downstairs to the group. I was in a fog the first 10 minutes as one of the moms were talking about IPAD apps. The school's loudspeaker cued on "Crisis Intervention room 5". SHIT, I thought to myself that is definitely for Boss Lady. I lost it, hysterically crying, sniffling. (you know the ugly cry when you get red and swollen and boogers drip out). The room became quiet and still. There was this energy of empathy pouring out of every single person in that room to my seat. And they just listened to me and let me talk with out interrupting once, nodding. They all understood me and where I was coming from, from only the 4 sentences or less that I said as I was crying. I did not feel judged and most of all I did not feel like they felt sorry for me. They were there for me and understood and JUST LISTENED.

As the weeks went on and on, it was just proved to me more and more how beneficial this group was for me. When the Hurricane hit they all came to my rescue by emptying their closets, their wallets, and their hearts onto my lap. Not even thinking twice. It was admirable. In just a few months these women have inspired and gave me the tenacity I needed to pull through. I am honored to be in their presence and lucky to have them. 

I am a true believer in reading quotes and writing affirmations to live by. One Tuesday after group I ripped a piece of paper and wrote "just know you are not alone" and carry it in my car til this very day, an affirmation to remind myself that I have my moms from group.

Fruitful and Multiply?

My whole life, no matter what our financial status, I wanted a big family. When The Boss Lady was an infant I was already planning the next pregnancy in my head. It was all mapped out, after she was potty trained we would discuss trying for more. Then we had the birth of Autism Spectrum Disorder and my mind set changed on having more children.

Every 28 to 30 days I grieve a loss of what could of been. Every 6 months Super Daddy and I have the discussion of pros and cons to adding more little ones to our family. Every year when a friend tells me she is pregnant my first emotion is jealousy and envy, quickly followed by excitement of course. At first I was ashamed of this, to admit to myself that I felt this way towards my good friends. Then I thought, it's natural and there has to be parents in my position who feel the same way. I think being honest with myself is most helpful when sorting out my emotions, especially the horrible ones.

How can I bring another child into the world where studies have shown if the first child has ASD there is a 1/4 chance the second one will be on the spectrum. I am not strong enough to handle that. I absolutely admire and commened parents that have more children. 

I long for another tiny little bundle of joy. The smell of baby lotion and new born pampers haunt me. The sound of their first coo and goo, the subtle creek of the baby swing, their precious little breaths as they sleep replay in my mind. The feedings, tummy time, swaddling, the nursery are a distant far away desire.  And then the questions come rolling in my mind.

Will it be fair to either of them?

What if the baby has any disabilities?

What if the baby is typical? Do I know how to be a parent to a typical child? 

What if I have another baby and Boss Lady goes into a full fledged aggressive meltdown, How will I protect the baby? 

Will a new baby help Boss Lady mature? 

Will a new baby make our family feel complete? 

Will the Boss Lady regress?

Will the new baby resent Grace?

What if the Baby has ASD and is aggressive like the Boss Lady?

Will me and Super Daddy drift and ruin our relationship by adding another Baby into the equation?

If I continue to wait, as I get older will the risk of the baby having ASD increase?

If its in my genes then the baby will definitely have ASD, right?

Do I want my family to grow for all the wrong reasons?

My mind races with all of these questions and then I burst into tears. It is so overwhelming! Family planning should not be this hard?!

There are times where I just want to take the risk and let it ride. Then I remember The Boss Lady has come so far and she has worked so hard to be where she is at. But, she is still at a point in her life where she needs my 1 on 1 attention. Because of her sensory processing there are nights when I rock her to sleep for an hour. Her self direction has me prompting her every 5 minutes to eat and finish her meals. Then there is the long process of: Getting ready for school. Getting ready for bed. On the good days, I convince myself, we can definitely have another baby. 

No one ever talks about this, either. It is a very isolating feeling. People with typical children do not know what to say and want to avoid making you feel bad. Parents with atypical kids already have more kids or are in the same position as we are, and its too painful or embarrassing to talk about. Some may even feel guilt that I sometimes feel but push their emotions away.  

I know none of my questions will be answered until or if I have another child. It all boils down to the fear of the unknown, and that is the worst fear, not knowing what will be.

The bible states God wants us all to be "fruitful and multiply".

...if only if it were that easy God...

Thursday, January 3, 2013

27 Years and Counting

So there is something I rarely share the whole story of. It is really difficult for me to talk about. I am not embarrassed, there is just so much information and emotion that comes after the following sentence.

My 30 year old brother, Billy, is severely disabled.

Billy is 3 years older than me, but at a young age I was grandfathered in to the BIG SISTER role. People ask me "how was your childhood with a brother with severe disabilities?" My answer is, well it was all I knew, and it did not really affect me until my daughter started her journey of special needs when she was about a year. I look back on my childhood and it was tough, but again it was all I knew.

I remember at 5 having to remember to lock all doors behind me or Billy would escape. At 4 I had to be responsible for dressing myself and tying my own shoes. Some times my feelings had to be put on hold because there were bigger things going on. Some days I would wake up to my amazing mother cleaning feces off the wall because Billy decided it was fun to do. Or watching my dad restraining him so Billy wouldn't hurt himself when he was in a full fledged episode. Billy for many years engaged in self injurious behaviors like biting his hands and banging his head against the wall. Some times he would bite chunks out of his hand and split his head open.The walls had a row of head butts indented in the wall. My Mom was the master of spackling and repainting.  My dad worked rigorously Monday to Friday, he left the house at 4 am and got home by 5 pm. Billy only slept 3-4 hours a night consistently. My dad would still get up with him countless hours in the night, and care for him all weekend so my Mom could catch up on sleep for the week to come, because she worked nights. There were no buttons in any of our TVs so he couldn't have control of the volume. My friends were always really supportive of my life, but when they came over I constantly had to explain things. But like I said it was all I knew. I realized at a young age how valuable life is and how lucky I was to not have to face what Billy did.

His whole life he was diagnosed with severe autism. He is non verbal and is on a 2 year old level. He has a lot of sensory issues. He was not potty trained up until last year. A few years ago another genetic test was done on him, he has had so many before. They found a mutation on his 12th pair of chromosomes linking him to Smith Magenis Syndrome, 1000 people in the world have it. I truly believe its a form of Autism, but it is so new and because 1000 people have it, studies are rarely done. He was born in 1983 and something so severe in the 80s was just masked by and immense amount psychotrophic meds. There was no google. It was the age of "What doctor says is correct and you listen". There was no parent training. There were no support groups. It was my mom, my dad, me, and Billy against the world.

Every single day for the 4 of us was a constant battle. Making sure Billy wasn't in the room when opening a new jar or a garbage bag because the sound set him for a loop. At 7 pm all TVs off because if he heard wheel of fortune the living room wall might come down. Haircuts, I will never be ready to talk about what transpired with hair cuts. I can tell you when he is happy he is a ball of joy. His laugh is so honest and real. His smile so true. The smallest things make his life happy. He is an angel and extremely special.

So this was my life and still is. Billy is now in a center where he goes to school 6 days a week and lives in a house with 5 other people like him. He has constant 1:1 24/7. He is off all of his meds on some insane organic diet and happier than ever. In his late teens his quality of life dwindled, so we made one of the hardest decisions. Hind sight, it was the best thing we ever did for him. We see him often.

When I was pregnant I was ready to conquer the world with my new family. The last thing on my mind would be my daughter having special needs. I had that chapter in my life already. I payed my dues, I thought. I had no resentment towards my child hood or my brother. My life was in perspective. I was so thankful and positive. I got it God, I passed the test. I understood what life was all about. It was the last thing I expected. Now here we are on the Spectrum, on the other side, the high functioning side. Experience on both ends, they are both difficult in their own ways. The pain I never felt as a child, that I guess I should of resurfaces ever so often.

When Grace was younger she would bang her head against the wall, and inside I would lose it. When I am going on no sleep and we have to physically force her to do something, I break down. When I read her progress reports from all her therapists, my heart drops. I still do not understand why things happen the way they do. How the hell did my parents do this? How did they always have a smile on their face and enjoy life the way they did? A lot of what my Mom and Dad did keeps me sane today. On the bad days when I push through I think back to what they did, and it gives me strength. My mom and dad had an Autism Awareness Car Magnet from when car magnets were very rare. And now I have it, it was passed down to me. How deranged is that? Now I wonder, will I pass it down to my child for my grandchildren? Yea, I might be getting ahead of myself but do you blame me?

Autism has been apart of my life for 27 years and counting. There is a reason. There has to be? right?