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”
Keep in mind I was epelptic as a child. So this is what has been running in the back of my head since he was an infant. And as you read you will understand why I am so upset, angered and frankly fucking bitter that it took so long for someone to take me serious.
One of the issues we have been struggling with Gabe his night time sleeping habbits. Gabe has always needed 12 to 14hrs of sleep a night. If you wake him up, you have pure hell on wheels. If he wakes up on his own, it’s rough but about 3hrs after waking up life returns to normal In the Nusbaum home. And when I mean rough, I mean biting, kicking, punching, head butting and it has been this way for him since he was about 6mos old. Gabe has always kicked at night. Infact most nights, he kicks, about 50% of the time Gabes ends up on the floor under his bed. When he was an infant I can’t tell you how many black eyes or bloodied-lips he gave me during the night. Nevermind the wetting the bed.
When he was 4 he was put on resperdol and a lot of the kicking stopped. It reduced by about half. Well over the years we’ve reduced his medication and the kicking started back up again. Back in July we had a huge scare with Gabe. Gabe speaks super fast in general and when he’s excited he stutters. It’s not that often, but he does. One day we were driving and Gabe was talking fast. I asked him to slow down and then the was stutters. Again, I said. “Baby mommy can’t understand you.” Then he was talking but he started slurring like he was drunk, I looked at him and he was kinda drooling and talking but it was complete nonsense. I called his pdeitrician they ordered a CT and that was negative. This lasted off and on for three days. When it was all said and done Gabe said his head really really hurt him. So since Gabe has always complained about his head they gave him the diagnoses of complex migraines. So up until recently anytime Gabe started slurring he usually always said his head was hurting a few minutes later, so we were giving him ibprofen. I still was pretty upset.
In Aug, I was teling his physiatrist and his pediatrician about this and Gabe’s sleep patterns and how much of a concern it was to me. I had several theories Because Gabe is thrashing most nights he’s not getting good sleep. A. Is he getting REM sleep? If not, is it taking longer for his medicine to take effect? B. What if he doesn’t need medication if it’s a sleep disorder? That’s not to say he doesn’t have problems. But we are tackling the wrong problem. C. Worse case scenario Is Gabe having seizures?
So off to the Sleep Study Specialist we go. He thought that Gabe may have had restless leg syndrome that could have been caused by an iron diffency. We got through the sleep study test and I didn’t sleep because I wasnervous watching Gabe the whole night. And of course Gabe sleeps like a rock and does move a muscle all night. I’m thinking maybe I’m over worrying.
A few days later, I get the call from the Sleep Study Specialist. He appglogized for calling so late in the evening. But he says he had bad news. He was expecting to see restless legg syndrome with Gabe. Turns our it looks like he was having siezures. He said there was irrular activity and he now wants more testing done and he wants him to see a neurologist. The doctor said it’s pretty rare to see activity at night, so it concerned him quite a bit. Here I was thinking we were safe.
I wasn’t shocked by the news. Mostly I was angry. Not at the doctor who called. At all those doctors in the past 9yrs who told me it was nothing, or babies don’t kick in their sleep, etc etc etc. I was angry letting them convince me otherwise. For all those times I yelled at Gabe for to stop kicking the walls when he could have been having a seizure. And I’m angry for all those times I sent him back to bed when he said his head hurt. Everything we have gone through with Gabe, I’ve always been able to keep myself calm and collected because I could say. Well at least he doesn’t need surgery, or he doesn’t have seizures, etc. He’s sensitive and we can deal. And I know that this will be taken care of. But I am kicking myself in the ass for not fighting harder.
How does Gabe feel? He’s my happy lil monkey and that’s exactly how he should be. Am I as upset as I was last week. No. I know Gabe is in good hands.
My best friends response was. “Put your big girl panties on”
My sisters response was”Is anyone dead? Is Gabe going to die? No? Then your good”
And it was exactly what I needed. I’ve been through worse. I’ve seen worse. I got this. Sometimes you need a kick in the ass to remind you that everything will be alright in the world.
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.
Isn't it funny how we buy into labels? Even amongst homeschoolers who are traditionally non-traditional or who are traditionally very traditional. Many many conversations amongst the moms are of what type of homeschooler you are and what you use, etc etc. Honestly, I don't get it. I wouldn't say we un-schoolers because amongst traditionalist it implies we don't school at all. But amongst un-schoolers we do a lot. So I have no idea where our loyalties lye. But it really doesn't matter does it? For us, the boys are hands on learners.
My theory is this. Learning is a free experience, so should education. So if I can make educating my kids a free as possible; then I have met my personal goal. Because learning is an experience, hence I am kinda anti-work books. I am of the mind that learning is holistic endeavor. Kinda hippy-dippy-ish of me, I know. I see it, as the whole body learning and adapting, not just the brain. It's not just about much how you can remember. Its how you can take in new information, processes it , change it, problem solve, and think out side of the box that determines intelligences. My goal is to teach emotional intelligence, self awareness and how to cleverly problem solve. I can't see how this is only done sitting at a desk and with just books & scores of testing. Granted books have their places, but I think tests are arbitrary at best. I just don't believe it to be, the be all end all to education. It just doesn't compute to me. My kids have become absolute sponges. Teaching them has become effortless. And frankly, that's exactly what I want. I want them to learn to be self taught, where every day is an opportunity to learn.
The first few days are always the toughest shift from: summer-fun-in-the -sun, to lets-get-our-school-work-done-so-we-can-fun.This year will be our 3rd year of homeschooling and so far so good. Granted we're not up to 4hrs for schooling a day, but at least we are doing work with little to no fussing and they are pretty excited about it. Honestly I think they've missed all their projects, museums, & friends
I was pretty amused by Zeke today. I've never really given the boys a history lesson, aside from going to museums. Well today we were learning about the Indus Valley, their way of life, and some of their symbols. Zeke says, "Hey mom, why did they have a swastikas?" Oh my what a wonderful question that was. We were talking about Hitler and his beliefs of the Aryan race, to Plato, Atlantis, back to Indus Valley, the Concentration Camps, Buddha, Gandhi, the corruption of man, and the ideals of perfections. This is the beauty of homeschooling! We are able to have these discussions, and that they themselves can make these connections without me.
We became time travels at our dining room tables. Me thinks this will be a great reason to watch Dr. Who, build our own TARDIS, and make some kinda of huge project for each different civilization in time we visit....... oh my gears are turnings! But for today, we made clay beads. They have to dry first. But when we paint them and string them together I'll post pictures
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.