Tag Archives: learning

Special kids make parents special.

15 May

Special kids make parents special. Special needs kids are not brought to special parents.

This…is my truth.

Before I start I must state that these are MY beliefs and mine only. I know that everyone has their own opinions of these types of things and I do not mean to be disrespectful or offend anyone. This is simply something that I think and that I felt like writing about today.

I do not believe that I have some kind of special characteristic or that I was CHOSEN to be the parent of a special needs child. I like the idea of that, but I don’t really believe it. To truly believe that, places me on some kind of high pedestal above everyone else. To say that, would be saying that I possess some kind of super human mother strength that has allowed me to endure, maintain, and overcome something that other mothers could not have done.

This isn’t true.

Many people say to me “I just don’t know how you do it? It must be so incredibly hard. I could never do what you do.” My response is “Yes you could. Yes you would. If this had happened to a child of yours, you would do what I have done and what I do. You would have no other choice.”

I didn’t have a choice.

I was a good mother before I had Oli. Logic would indicate that I would be a pretty good mother regardless of what type of child that I had. I don’t think that I do anything extraordinary. I think that through the progression of dealing with what I have, I have been incredibly slow to learn to live with it.

When I write the story part of my blog I write it as it was back then. Not as it is right now. When I talk about the loneliness, the sadness, the self-pity, self-hatred, blame, regret, remorse…that’s how I felt back then, not how I feel right now. I have learned to accept, embrace, and move on from believing that this is something that happened TO ME.

This did not happen to me. This happened to Oli.

Ever since Oli was born I have acted in a way that I did not feel inside. I have always ACTED like it was all fine and that I was okay with her disabilities and her struggles. Because I never wanted her to feel like she was any different. I never wanted her to see that I felt sorry for her. I never wanted her to feel my tears stream down my face or feel my body shake as I shuddered with grief.

I acted how I didn’t feel inside because I wanted to feel what everyone else did. I wanted to feel peaceful with it. I wanted to get to that elusive acceptance part that other parents would talk to me about.

Where was it? How do you get there? I use to cry and beg my husband “Tell me what to do! Tell me how you feel how you feel!”

It was only not too long ago that I finally started believing it all for myself. I’m not saying that I feel okay with her struggles. I will never be okay watching my baby girl’s difficulties. What I am okay with now, is who she is as a person.
I am okay with what makes her Oli.

If you have a child like her or have fought with your own demons, you know what a tremendous accomplishment this is. This was huge for me. This took away all of the guilt that I felt since the day she was born. This also took away the pressure of believing that I had to live up to that super human mother strength. This took away the pressure of trying to do this thing perfectly.

When people would say things like “God gave her to you for a reason” I thought that it meant that I had to be perfect. Because if God had given her to me for a reason, then I must do something amazing with this gift. I must be the perfect mother because I was CHOSEN.

I had to stop believing all that because it was just too much pressure. It was too much. I would beat myself up if I made mistakes and punish myself for feeling the way that I did. I would chastise myself because if GOD had handpicked me for this incredible task…then I was failing miserably. God wouldn’t want me to feel sorry for myself. God wouldn’t want me to feel sorry for her. God must be sorry that he chose me. Those thoughts began to consume me and I sunk lower and lower. Those words of my being blessed by a gift from God did nothing, but make me feel worse.

I do believe in God. I do believe that there is plan and a power greater than me that is running the show, but I don’t necessarily believe that I was specifically chosen. I believe that this just happened.

This might sound contradictory. It probably does. It’s hard to explain in words.

I guess just the fact that God, the big cheese, picked little old imperfect me specifically for this huge responsibility freaks me out a little bit. Okay. It freaks me out a lot. Those are impossibly huge, scary shoes to fill. Those are measurements that I just can’t possibly live up to.

I make mistakes. I mess up. I’m not perfect. I never will be. This is a learning process and unfortunately part of life is messing up. It’s making mistakes, but learning from them.

If you have spoken the words “God gave her to you for a reason” to me please know that I really appreciate it. Know that I don’t get upset or cringe anymore. I know that when people say those things it’s because they really believe them and it comes from a good place. I know that they are words of encouragement. I really don’t mind. I just wanted to talk about why I don’t say it to other people and why I hated being told that in the beginning.

The only thing that makes me special today is being the luckiest mom in the world to 3 beautiful children. One of them just happens to be special needs.

My life as mom.

12 May

When my son Kekoa was born in 2005, I became a mother for the first time. When my daughter Oli was born in 2007, I became a completely different kind of mother. I became a special needs mother. When my last daughter Ginger was born in 2010, I became a different mother again. Each child has changed me, made me grow, and taught me new things. Each child has made me the mother that I am today, but not the mother that I will be tomorrow. As each year passes, as each child gets a little older, as I in turn get a little older (boo), I learn. I learn and become a little more comfortable with this messy, unpredictable, smelly, funny, weird, magical thing we call motherhood.

When my son was first born, I was a wreck. Seriously. I panicked over everything. I was terrified that someone was going to breathe on him the wrong way and give him the plague. I was scared that someone would hold him the wrong way and his neck would snap off or they would drop him on his head. I was afraid that formula would make him less smart or that the wrong baby food would give him some kind of weird disease or give him explosive diarrhea.

When he was 2 months old I seriously thought that he might have some kind of syndrome. I studied him too long one night and my lack of sleep and new mother brain absolutely convinced me that something was wrong with his face. Didn’t his nose look a little too flat on top? Weren’t his eyes set too close together? Was his head supposed to be that big? My husband laughed at me and certified me exhausted. I was sent to bed and he looked normal to me again in the morning.

I worried that he slept too much or didn’t sleep enough. I worried about his clothes. I wanted him to have the most adorable new clothes and I worried that while I worked, my husband would dress him in mismatching outfits and wrong colored socks. I worried about him sleeping on his back. I worried about him sleeping on his tummy. Could I cover him up at night or would he smother to death? Was this the right kind of bottle or would it give him gas? Was this swing certifiably safe or would it be recalled in a month? Was I doing it right? Was I doing it wrong? And his manual was…where? Where was his manual? I would think, “This kid should’ve come with directions.” Then I would remember that I’m not so good with directions and then I would worry about THAT! I worried about everything. I was ridiculous. I was NEW!

And then I had Oli. Oh my god. THEN I had Oli!

I still worried about everything, but those worries changed. I worried about all of those other things and more! I worried that she wouldn’t live to see her first birthday and that I wouldn’t get to watch her grow up. I worried that she wouldn’t grow or eat well enough to thrive. I worried that blindness would handicap her in such a way that she would never enjoy her life fully. I worried that she would never walk or talk. I worried that she would never have any friends. I worried that she would never have a boyfriend, go to the prom, or get married. I worried that she would never get to know the joys of raising her own children. I worried that if she did have children, they would be affected by the same eye condition and also be blind. I worried that blindness would not be her only disability. I worried that there would be more.

And then I had Ginger. For the love of all the crying in the world…and then I had Ginger. She cried so much and I was so stressed out about having three children ages 4 and under that the only things I ever worried about with her was whether or not she had been fed and if her diaper was clean. I didn’t have time to worry about anything else. I didn’t have the energy either. She rarely got new clothes and often times, she wore the same clothes that she had slept in the night before. If she wasn’t crying, we were good. She cried all the time. Sooooo…we were not good very often. I still didn’t really worry much with Ginger. Maybe I had worried myself out?

Many of the worries that I had with Kekoa and Oli were valid as a new mother and as a new special needs mother. Many of them were classified as ABSURD, but many of them still stalk my brain at night. It seems that when the darkness falls, some of those old fears silently creep back into my mind. They try to keep me awake, pretending that I can predict the future and the outcome of what life holds for us. Then I wake up in the morning. When I wake up I remember again that life is a journey and an adventure and I don’t always need to know the destination. I only need to be present for the ride.

Motherhood is about changing, adapting, and growing. Old dreams may be lost, but new dreams are acquired. Old thoughts and ideas are discarded and new ones are developed and perfected. Things we worried about before are acknowledged as silly. Other things we worried about before still linger.

The point is…every mother worries. Regardless if you have a child with special needs or not. It’s a requirement for getting your motherhood license. You must worry about the most insane, ridiculous, irrelevant, nonsense matters. And you must worry about the reality and the responsibility of raising good people. We are all just trying to raise good little people and make sure that they grow up into respectable, responsible, productive members of society.

All of us just want to love our children and sometimes we just want to survive the day.

Because some days…mother’s just need to survive the day.

Can You See Me? I’m Here In The Darkness. (Part 4)

24 Feb

I spent the last two days attending the Blind Cafe and then the 2013 TX Deaf-Blind Symposium. Because of these two events my perception of Oli and some preconceived notions of her abilities/disabilities have completely been swung around and turned on their heads.

Where I have focused a lot of my time on what she cannot do because of or what she will not do because of .I am now seeing exactly what she is capable of and what is possible if I give her the chance. Although I really felt like I had given her lots of opportunities to explore the world and chances to communicate, after talking with blind adults and listening to experts in the field, now I feel like. . . Holy shit! I still have been regarding her learning opportunities in terms of what I see as limitations because of her disabilities.

While I was sitting in the darkness at the cafe a striking realization came to me when the wait staff started answering questions. I hate to say that when I first see a person with a disability, I see a disability. I’m not supposed to see that right? Because my daughter has a disability? But I still do. I don’t like that about me and I really try not to. I realized that one of the things that was so wonderful about listening to the blind adults speak in the cafe was. . . I didn’t see a disability. I couldn’t! And it was great. All I heard were intelligent, funny, nice people speaking. And then I started thinking about what an advantage they have over all of the rest of us. They honestly get to know people in a fast, genuine, real way bypassing all of the visual judgemental nonsense that sighted people have.

Always aspiring to be one of those “good” people who doesn’t judge people by what they look like, what they’re wearing, or how clean they are (although I’ll bet blind people notice that one even quicker than me) I suddenly started thinking of Oli as. . .lucky. I stopped viewing blindness as something I would never want for her and although I still wish she wasn’t, I started looking at all of the good things about blindness. Like seeing people by way of her heart and judging them by the truth in their words and the honesty in their voices.

I had a moment when I was sitting in the dark, listening to the band play, that I was overcome by sadness. Silent tears poured down my face as I sat there thinking about how hard it was. Walking around not knowing where I was going, trying to find my food and not knowing what I was eating because nobody told me. Tasting food that I HATE and not knowing if I had a drink. Wanting to wipe off my hands and not being able to find my napkin. I felt helpless. I felt alone.

But as I sat there crying quietly so no one would know, I started to recognize that feeling. I remember spending a lot of my time feeling that exact same way in the first years of Oli’s life. Lost and alone, crying silently in the dark. I welcomed that feeling like an old friend and greeted her with open arms without even realizing who she is. Who she really is… is my own self pity. My own fear, ignorance, and judgement.

I opened my eyes, dried my tears and sat up straight in my chair.

NO! No more!

I will not allow this twisted friendship to continue! I will not welcome you into my heart! I will not pretend anymore that you will stay for a short visit and then let you live on my couch for years!

You Miss. . . are no longer allowed in my front door.

I am not helpless, weak, alone, unheard, unloved, or in this by myself. More importantly, this is not about me.

This is about Oli and she is none of those things either.

(Thank you for reading about my experience at the Blind Café! If you want to know more about it or want to know if it will be coming to a city near you go to www.theblindcafe.com The End.)

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