Friday, December 25, 2015

The love a parent has for their special needs child

Either by choice or by accident you decide to bring life into this world.

A mother carries her baby from the time the ge/she is as small as pea until the baby is ready to take his or her first breath. 

This is a big responsibility and one that should not be taken lightly. A mothers love for her child starts before they are even born. 

When a mother or father holds their baby in their arms for the first time, it is like nothing else. It is bigger and better than any feeling, emotion, or thought. It is a blessing, miracle, it's magic! 

As a parent you hold that baby in your arms and you make a vow, you promise, and you swear to God to protect this child from hurt and pain, because, this child came from you, your very own creation, the greatest thing you've ever made. There is NO other love like this. 

You love your parents, you love your spouse/significant other, but it's not and never will compare to the love you have for your beautiful creation. This child you carried, that came from you, this beautiful being that you would lay down your life for in an instant...that kind of love, that is a parents love. 

What if your creation came into this world even more special than you could have ever imagined? What if your child was as fragile as an egg? What if you were not just a mother or a father, but you are now a mother/father as well as the caretaker?

That vow, that promise, that you made, intensifies to a whole new level. 

Imagine you have something and it is the most precious thing to you and you keep it safe and secure so that no one hurts or breaks it on you. You hide it away, you don't share it with others, and you protect it. 

Think about it, do you have something like that? 

You do, great! 

Now multiply that by whatever the highest number is on the is still not enough! The love a parent has for their child is indescribable. 

As a parent, when you have a medically fragile child or a child with disabilities that needs you to not only be their mommy or daddy, but also their caretaker, you now have the weight of the world and the weight of your child's world on top of your shoulders on top of that you still and always will have that indescribable 

It's scary, it's emotional, and all you think about, day and night is your promise to this beautiful creation. 

You fight for your child to get the treatment that they deserve, you use your voice to fight for your child because they can't and until they do and can speak for themselves, you are not going to stand quietly by while your child needs you to advocate for him/her. 

Your creation deserves that! 

As you do this, you are teaching this child that he/she is loved, you are teaching him/her how to advocate so that they know how to do it themselves, by you not giving up, you are showing them  how to be strong. 

As a parent you are raising your child to be independent for that day when you are no longer here, you prep them for the world and you give them every single tool that you have, because if you don't, you are setting them up to fail.

A parents love won't let that happen! 

Thursday, December 24, 2015

Beautifully Different

Everyone is entitled to their own opinions and their perspective may not be like that of yours, and that's alright. That's what makes us different, and different isn't bad.

Somewhere along the way I think we lost that important piece of passage...Different isn't bad! 

Say it out loud
Different Isn't Bad! 

I was born to be different, unique and special. My differences are not like your differences. I'm short, very short. My husband is tall, extremely tall. Different indeed. But that just means he can reach the highs for me and I can get the lows for him. That's the way I look at life. That's my perspective. 

I'm not jealous or envious of his height, I embrace it, I accept it, and I include and incorporate it into my life. We work together as a team to get what needs to be done, done. I love that we are different. 

You can find the beauty in all differences and appreciate and learn from them. 

We all have our differences and we all have something to contribute. We are not the same, but we all want the same thing, and that's acceptance. 

We need to stop fighting about what makes us different because it's not a competition. All of us are wired and created differently, and we could all learn from one another and our beautiful differences, unity instead of segregation. 

I will not judge someone or put someone down for what makes them different, because different isn't bad. 

Celebrate diversity

Accept others 

We are all special 

Don't make different a bad thing, because it is a beautiful thing. 

Tuesday, December 1, 2015

Watching Inside Out made me a better mom

Anna is 4 years old and Zoey is 3 years old. Zoey was diagnosed at 21 months old with ASD, GDD, SPD, and Dyspraxia of speech. It changed our family and it changed how I parent, it did not change how I feel about my children. I love both of my girls, unconditionally!

The plans that I had in my head of what and who I thought I would be as a mother...well those plans were just plans, thoughts, dreams that played out in my mind. I'm not that mom that brings my girls to dance class or play dates. I am the mom that spends her time at doctor's offices, fighting on the phone for services, and I am the mom that turned into an advocate immediately after diagnosis day.

When you are given a diagnosis for your child something changes inside of you, you're not just a parent, you are their caretaker, you are their voice, you are their person. What you do will impact their future long after you are gone, and that thought never escapes you. You take on new fears, new worries, new struggles, you learn the true meaning of love and your heart has moments of beautiful joy and happiness as well as moments of sheer utter heartache and heartbreak, All of these feelings and emotions that you feel are a lot to carry. You push on and when people ask you "I don't know how you do it?" You just grin and bear that question because what other option do you have, there is no alternative, this is your child.

I poured myself into advocating, fighting for my child, and researching anything and everything that I possibly could. Autism became my life and everything revolved around autism...early intervention at home for over a year, paperwork, so many specialists and doctor's appointments that I lost count, paperwork, dealing with insurance (that's the worst) IFSP's and IEP's...did I mention the paperwork?!

Life as we knew it had forever changed, I was not the mom that I had thought I would be. I'm the mom just trying to survive, trying to make a difference, trying...trying...trying!

I tried so hard and so much that I failed!

I'm hard on myself, I know that...but I can't escape this feeling of guilt. That's how we are made, everyone has feelings and emotions and sometimes you get so wrapped up in your own feelings and your own emotions that you don't realize that a smaller version of you is having a hard time with her feelings and emotions too.

I was doing and being so much for Zoey, that I failed Anna!

You may think that your child is too young to understand and too young to know, but they do. Look at how you feel as a special needs parent and now double all of that. A sibling to a child with special needs feels all that you feel, as well as their own feelings. This little girl has watched and waited to have a conversation with a sister and still waits, she feels left out and not as special as her sister that gets SO much attention, she misses that she can't do something with her whole family, but she does cherish the moments when mommy or daddy do something special with just her, while the other parent stays home with her little sister. She has feelings and emotions that she doesn't know how to explain, so she keeps them locked away, and this little girl takes on some of the behavioral traits as her special needs sibling so that she too can get the same attention.

I didn't mean to dismiss her feelings and emotions and I never wanted her to feel like this! I'll be honest, I never would have realized what was happening, I mean I would have, but not as quickly as I did had I not watched the Disney movie Inside Out with my girls.  Watching that movie was the best thing I could have ever watched. I immediately related to Anna and her feelings and emotions, I watched this movie and saw my Anna and I knew what I had to do.

We were going to talk about her feelings. What makes her sad, what makes her angry, what fears does she have, what disgusts her, and most importantly...what brings her joy? We were going to talk and have a discussion about just her! That conversation happened as soon as the movie was over, I didn't and couldn't wait...she had waited long enough!

I pulled Anna aside and we talked about how much we liked the movie. I then asked her what feeling was she? She went quiet. I then asked "are you mad at mommy?" she looked up at me and immediately said "No!" I then asked her who she was mad at and she put her head down and pointed at Zoey.

I was feeling sadness and anger at myself. How could I have not seen this, how could I have failed her so much?

I had the "talk" with her.

Me: I want you to know that I love you very much, and I love Zoey and Daddy very much too. You and Zoey are sisters. You go to your school and you sing songs and play with your friends at school and you know how to use the potty like a big girl and you can tell me what you want to eat and what you want to drink, and if your belly hurts or you have to go to the can tell me and I help you, because I love you so much!

I also love Zoey so much. She can't tell me that she's hungry or thirsty or even what she wants to eat or drink, she can't use the potty and I'm not sure when she will use the potty. She can't tell me when she's hurt, sad, angry, or happy...I don't know her feelings at all. So Zoey goes to a special school where they work with her everyday to see if they can help her get her words out, so that we can help her, because we love her so much.

Anna: Why can't Zoey talk, mommy?

Me: Zoey learns differently than we do, Zoey has Autism. She is still our beautiful little Zoey Bear and that will never change, we just need to help her do things that she can not do for herself, do you understand?

Anna: Yes, Zoey has autism, but she's still our Zoey Bear.

We hugged and I told her again how much I love her and that she could always tell me her feelings, because her feelings are important. She smiled and went on her way to play, I sat there watching her walk away and I no longer felt anger or sadness, I felt joy and much love!

Never has a movie spoken to me like this before, thank you Inside Out for teaching me how to talk to my oldest daughter about what it's like to be the sibling of a special needs child!