This is for anyone who has a loved one with Autism, and especially for all the ones whom we love with Autism.  My children overwhelm even myself with their capacity for love and expectance in others.  If I have achieved nothing else in my life, I would be a happy woman.  This is the one aspect of my life, that  I am most proud of. My only hope is that this will always stay with them, despite life's turbulence. 

I generally don’t tell people that they have Aspergers  at first, unless they ask. Mainly, because I don’t the anyone to treat them different or think they are incapable of anything just because they have Aspergers.   Reality is, someone always makes a comment about their behavior or lack of eye contact. And I then tell them.  The boys just started Kung Fu.  On the second day of Kung Fu, Gabe proudly announces he  and his brother, Zeke, has Aspergers. I've never hid it from the boys, we are involved with the Autism Community here in Va Beach, and most of their closest friends are on the spectrum too.   They know they have Aspergers Syndrome, but I’m not totally sure what it means to them.

Today were driving in the van to yet another doctors apt.  I figured this what a good time to have this conversation with them.  What they had to say, made my heart soar and brought tears to my eyes. It is the moments, that I know I am doing things right despite all that we've endured. 

Me: “So Gabe, you told the teacher you have Aspergers. What does Aspergers mean to you?”

Gabe:” I donno”

Me:”Well… you know a thing or two about it.  How do you feel about all your friends who have Aspergers”

Gabe: “They are always the nicest and the smartest kids I know.  They are builders and inventors”

Me: “Is it a compliment or a put down when you think of the word Aspergers”

Gabe: “of course it’s a compliment… who wouldn’t want friends with Aspergers”

Me: “What do you think about your friends who are non-verbal”

Gabe: “Mom… don’t you know they are the most nice of all”

Me:”yeh… they are aren’t they”

Me: “So Zeke, what are your thoughts?”

Zeke: “I agree… they are too smart and too nice”

Me: “And the kids who are non-verbal”

Zeke: “They are thoughtful… nothing is wrong with them, they are just thinking”

Me “You were non-verbal for awhile… do you remember any part of it.”

Zeke: “I know… but I was thinking.. that’s how I know they are thinking”

Me: “What were you thinking about?”

Zeke: “I don’t remember… but I know it was important”

I don't even know where to begin.  I have come to a conclusion that I was just not supposed to survive and I am far too stubborn to die.   With each new thing I survive I am in awe in fragility of my life as well as the strength I have gain from that fragile state.  I remember as as child I thought I would never make it past 10, and then I thought I'd be lucky if I saw 20.  Honest to God, I never in dreamed I would see my 30s.  I've impressed myself. I've survived open heart surgery, 7 pacemakers, factor 5, 3 pulmonary embolisms, CHF, hoshimotos, not making it through birthing my son,getting hit by a lighting while driving,  tornados almost blowing me of a bridge and i am sure i have more crazy stories, but those are the ones that come to mine at the moment.  And think to myself.... Holy fuck. I'm still alive.    It doesn't make me sad, in fact it makes me embrace this  crazy life of mine, I have such desire to live. I want to dance more, laugh louder,  fighter harder, love more.

Then I have lost a lot. I've lost numerous family friends of the years.  To the friends who passed. Thank you for gracing me with your presence. You are missed every day. It was a honor knowing everyone you. But nothing has been so hard as the loss of my brother and my father.  That void is endless.  I am so thankful that I had them in my life. Peter was a breath of fresh air. The one of thing I remember most about my brother was his infectious smile. So if anything.  I thank you  to you, Peter for teaching me to have the courage to smile in spite of some of my darkest hours and the courage to be myself.  I'm thankful to have John Wayne for a father. Well I say that jokingly. But Sarge was cool, smooth, a straight shooter, but ever so intelligent. I think dad knew things were going to be tough for me.  While I never got what he was saying when I was a kid. I appreciated his bluntness. I find myself looking back on his advice and thinking. "Well I'll be damned." I needed that kick in the ass and I needed not only his strength but how to have personal strength.  While my father wasn't the most affectionate man, I knew by the look in his eye how proud he was of us.  My mother... Is the definition of  unconditional love. While I know we butt heads. There isn't a doubt in my mind that my mother loved us all.

I'm Thankful for my brothers, sisters, neices, and newphews.  I can't even imagine a world with out them. I mean how does anyone exist without a "Masiak" in their life? When I was younger I had a hard time feeling close with my siblings. It's  not that I didn't love them or they didn't love me. I think the years being in and out of the hospital, loosing Peter, and  most of them moving out by the time I 10 . It was confusing on my little head. In my adult years there isn't a shodow of doubt in my mind of the amount of love we have for one another.  And that no matter what we go through as a family it doesn't shake us, it only makes our clan stronger and prouder then before. I am so very thankful we are not an obnoxiously stuffy family. That anyone in welcome in our homes that we know no strangers. Mi Casa Su Casa seems to be the family motto.

I am Thankful for my husband. He  is not intimidated by this freerecely indepdentant  woman that I am. I mean I get that I am overwhelming. And I get that I am a lot to take in at once. I mean people complain that I am too much. My feelings aren't hurt... I know the world isn't in love with me like I am in with it. He understands my complexicies that I am both a lioness & kitten and he can handle all of this.  Or as he puts it, "Depending on the day, I'm a Bear in a Bunny suit, and somedays I'm a Bunny in a Bear suit" I am  thankful for my children. They are the beating of my heart. There are no words for the amont of devotion and love that I have for my children.   I hope that one day I will be ever so lucky to see them have children and they too will understand depth of my love for them.

I am Thankful to have been raised poor & in Guinea. I grew up wild and free.  There is something about the Guineamen that is no other place I've lived.  It's not just because they are watermen or their dialect. But they are a people who have their own ideas of what is right or wrong and to hell with society if society doesn't like it. Rebellious isn't even a good word to describe them. If you knew the Guineamen, you'd understand what I was talking about. I'm so proud to have grown up on the marshes of Browns Bay.  Why on earth would I be thankful to be poor? Because I know what real cold feels like.  I know what having no A/C feels like. And I know I can survive without modern civilization provided I get my pacemakers. And I know exactly what hard work is.

I am thank for my friends. You know who you are.  Family doesn't need to blood for me to love you less. The friends I've made in my life, I've learned so much from.  To the friends who've saved me from myself, my temper, my stupidity, and to the ones whom I've lost touch with over the years. Thank you for all the wonderful support you have give myself and my children, it trully means the world to me. If I leave this world tomorrow, my one goal would be not just to let people know, but to make them understand that I loved them and I especially loved their flaws.

I am putting this here, because this is a serious lack of information out there about medicaid and our children. Many of us believe that there is:

A.) No services out there for us & children

B.) Or that we make too much money to even think to ask for help

C.) We kinda know, but we don't know who to ask.

All overwhielming to think about I know. But once it's done. It's done. Some of it may take a few weeks others may take a few months. But putting in the effort can really help out in a major way. For us at least. At one point, we were paying $1000 in co-payments. That wasn't even meds or gas.

Once a month TASA (Tidewater Autism Society of America) does a monthly meeting & a monthly Coffee & Chat where out Vice President comes out and helps parents with the EDCD waiver. Please, if your local. Come speak to us. There is so much out there for our kids.  If you are outside  the tidewater region, your local Autism Society should be able to either help your directly or put you in contact with person to get you through this.

My not so professional terminology for the things offered in VA for our special needs children

EDCD/Long Term Waiver: provides medicaid, medication, attendant care, and respite time. This is based on your childrens' income NOT yours.

HIPP: reimbursement of premiums we spend on our primary insurance, if our children has medicaid as a secondary insurance. .

DD & ID waiver: is housing modifications, and offers many many needs that your child may need. The waiting list is about 7yrs.

LOGISTICARE (gotta call 866-809-4620 to get the forms)-reimburse us the time we travel between appointments. I believe you have to have the your children on the EDCD waiver (I just found out about this as of two days ago... damn I wished I knew about this 9 years ago!!!)

ESPDT- ABA therapy, and technology assisted equipment, ie iPads, audio therapy, wheel chairs, therapy equipment.