Celebrating Siblings of Disability

Today social media is full of precious faces and incredible stories of autism and the people behind the label.  Those children and adults who are too often misunderstood, ignored, and laughed at for their little quirks and rigid rituals.  As we celebrate World Autism Awareness Day, I would like to talk about the part of disabilities so many forget; the siblings.

As I write I think of my oldest and only daughter.  My only other child and the child who always had to step back and settle for whatever we had left over to give.  The child who has grown into such an amazing woman and who makes me feel incredibly blessed every day.  She is not a religious person, but I have always told her that I prayed everyday of my life for her.  All I ever wanted was to be a mom and a wife.  With Joe and her, my entire world was everything I ever wanted in life.

Mia was two days shy of being exactly two years old the day Jake was born.  She really has no knowledge of life before him.  To her, Jake’s birth and all that followed was just her normal.  She was always so precious with Jake and treated him just like any big sister would treat her baby brother.  She even attended most of his therapy sessions with him and played happily with all the other siblings and special needs children who came into her life.  

It really was not until middle school that she started realizing that our family was not quite like all the others.  We had to have smaller birthday parties because Jake would get overwhelmed or we had no one to babysit him.  We tried our best to do as many things we could and include our entire family but eventually, Jake’s behaviors left only me or Joe attending the various concerts, plays, and activities that Mia was part of.  

I remember the day she realized the word retarded meant something not so nice.  She looked heartbroken that people would say ugly things about her brother, but the reality was she was getting bullied at school because she had a brother who was different.  Just another reality of having a child with special needs.  Just one more thing that Mia had to deal with.  

Amazingly, I think those hard times have helped shape Mia into the person she is now.  She is definitely a champion for those who are less fortunate, those who have disabilities, and those who are considered by so many to be less than.  She often has a hard time being her own champion which she probably gets from me.  She is definitely stronger than I was at her age.  I guess she always had to be.  

People often tell us parents that they don’t know how we do it?  We special needs families say to ourselves, “we didn’t know we had a choice?”  

Having a child with a disability changes you.  It changes your family, your friends, and it definitely changes what you thought your life would look like.  But it also changes you in many positive ways.  Our family would not have met the amazing people who have crossed our paths and become like family without disability.  I am not sure I would be as outspoken if disability had not been a part of our family.  I know also, that even with the hardships of being a sibling of a child with a disability, my daughter is, in many ways, who she is because she had to face some difficult situations and challenges, including giving up some of herself and her childhood because of disability.  

So today, I celebrate my daughter, and all the other incredible siblings of children with autism and other disabilities.  

You are loved, you are appreciated, and you are noticed for all you do and all you give up.  

It's the Little Things...

It's a beautiful sunny day outside which brings me such joy. As a mom to a child with severe autism, you try to take every moment of beauty and peace and just be still with it because you know the moment will pass swiftly. Today, as I am stepping out to get our mail, it feels like just another day, and then it happens. That gut kick that reminds you that you and your family are not like most others. 

Today, Jake receive a letter addressed to him which is not all that atypical. But, today that letter was his SAT School Day Admission Ticket. Just one more of the far too many milestones that Jake will never reach.

I thought I was past the point of these emotions but guess what? I am not. It still hurts. It hurts that he does not or is not capable of achieving even some of the milestones of many kids with disabilities, but especially not those of typical kids. 

So let this be a reminder for everyone who does have typical children...be thankful they are asking you to go to their friends homes because so many of our kids have no friends. Be thankful that they refuse to do their chores, because many of our kids are not capable of even trying to do chores. Be thankful they forget to call you on their cell phone, because hey, my child will never even ask me for a phone. Smile every time they ask you for the keys to the car because, well, some kids will never have the opportunity to get even their driving permit. 

Loving a child with disabilities is easy. 

Having a child with disabilities and dealing with the heartache of the never wills is hard. You never know when you are going to be overwhelmed with emotions over some of the most insignificant things. You cant control it either. It just happens. And then, you pick yourself up, wipe of the tears, and soldier through, until the next time.#myautismlife

Not An Option

February 12, 2016

Today as children in schools across America were celebrating Valentine’s Day, and a dear high school friend was contemplating the switch from liquid face foundation to mineral foundation via group text messaging, my husband and I went to look at two intermediate care facilities for people with extreme behavioral issues.

My entire life all I wanted was to have children.  I married later in life but not within the age of risk of having a child with a disability.  I did not drink soda, consume caffeine, or take medications while I was pregnant.  I did not drink beer and I love beer. 

I did take my prenatal vitamins regularly and we did plan for this amazing life event called children. 

Our son was born with Down syndrome that had not been realized prior to delivery.  Not that a diagnosis of Down syndrome would have matter to us.  Before he was two years old, we noticed he was not like all the other kids with Down syndrome.  He was more like the kids we knew who had autism.

Flash forward to his elementary years when we finally received an autism diagnosis.  Even prior to the official diagnosis, autism ruled our lives.  We knew even if the schools and doctors did not want to acknowledge the obvious.  “It isn’t a matter of IF he will talk, it is a matter of WHEN” said one of our teachers.  Sixteen years later and he is considered non-verbal.  He says some words, uses a communication device, and also uses some sign language.  And yet the ability to communicate still creates distress and frustration for our boy.

This past weekend we had the worst meltdown to date.  It involved, hitting, kicking, scratching, trying to bite, banging his head, broken toilet, damage to our home, and a lot of tears.  Monday, we were notified that a room at a care facility had opened up.  This was NOT something we were ready to consider.  At least I was not ready.

 

I cried for days prior to making the appointment.  We finally agreed we would look.  I wish I could say that the places were amazing and I could see our son living there happily ever after. 

What I will say is that walking in the homes of these 12 people who require 24 hour supports made me want to throw up.  Both places smelled of pee.  All the people tried to make each place seem like a viable option.  I was not buying it.  After touring the first place and as my husband was asking questions, I burst out crying and asked to leave.  Why does this seem easier for him than me?  Why does this even seem like an option?  I felt like both places were not anything more than an institution within the walls of a home.  THIS IS NOT WHAT I PLANNED FOR MY CHILD!

He is 16 years old!  Most parents are struggling with their teenage boys wanting fast cars, girlfriends, smoking, sneaking out.  Honestly, I would take those struggles any day if I never had to consider a placement option for my son.  I want my son with me!  I want to kiss him goodnight EVERY night, not just when I go to visit.  Making a decision to put my child there is a goodbye I am not ready for. 

Is that fair to my spouse?  Are we both going to resent each other later either way? 

I totally get that this would allow us to maybe spend quality time with our child, and allow us to have a chance to breath.  But just thinking about this option leaves me unable to breath.  Does it get easier?  Why are there not more options?  Why is it so hard to just get help within our home?  I can’t do this, at least not yet. 

There has to be a way to keep our family together and still get help.  I can’t stop searching for the answer because I am not ready for this option.

Let the blogging begin...

Since everyone seems to be blogging I thought I would give it a try.  I have always wanted to blog but I just didn't feel I had a reason considering I facebook, twitter, and all that other stuff.  However, these past 2 weeks I have been motivated by an amazing girl who has Autism. 

Carly Fleischmann has autism and one day started typing to get her thoughts out.  Everyone has been amazed at her accomplishments. I find her completely facinating not just because of what she is doing, but because we share the inability to communcate with our son, just like her family did with her for so long. 

For more information about Carly check out her web site: http://carlysvoice.com/

Her parents tell of using motivators to increase her typing.  Our son Jake just turned 12 and speaks very little.  Most of the time he might say one or two words at a time.  Most words are because he is wanting something.  He will say milk, juice, bath, eat, please, Jeep, bike, etc.  Sometimes his request are followed by please.  Sometimes we can prompt him to say Please Mommy, or Please Daddy. 

He does write and read many words but never consistently.  This past weekend, I walked into our bathroom and on his white board was written "cap."  I quickly realized that no one else in the family wrote the word.  I later found the marker in his room. 

This lead me to the idea that I would use Jake's white board much like Carly uses her computer.  I would request that Jake write words for the items he asks for each day, such as milk, juice, chips, ice cream, hot dogs, etc.  I wrote the words on index cards in simple black and white letters and put them in a ring holder.  When Jake wanted juice, I made him write for it.  I was amazed the first time he did it. 

The first day went well.  Some words he wrote easily, some he had a harder time with.  All were recognizable.

The second day, he started to be silly like he so often does.  He started adding letters into the words and then laughing.  Sometimes if he was being really silly, I erased his word and made him do it again.  He seemed to be getting the hang of what I was wanting from him but he was also letting me know with laughing and added letters that he was in control of just how much he was going to comply with my requests.  Fortunately for me, I was the one holding the juice and ice cream. 

The second day, he wanted juice.  I said to him "you know what to do."  So he walked over to the white board and started to write.  Then he saw that the index card was showing the word Elmo.  He then picked up the index cards, flipped through them, and found the word juice.  He put the index card down beside the white board and wrote juice in clear letters.  I was amazed to say the least.  That was a moment I wish I had on video. 

As you can see, it was a nice start to a new learning style.  I'll keep you posted on how we continue.