Today is a different kind of day. Today is a bit of a new beginning. It seems right. It seems peaceful. It seems like I am finally ready to untie the strings of mama's apron and let him learn to fly.
We have a vacation from school for the Carnaval holidays. This is what I would compare to Americas Mardi Gras. The same celebration. The beginning of Lent and the arrival of Easter. And it's a busy time with parades and dressing up and parties and celebrations. We've attended 3 parades since Friday...and the boys have enjoyed becomeing someone else entirely and filling sacks of candy thrown from decorated floats. But today, there is no parade. There is no carnival. Today, there is a young man attending his school daycare, playing with children, eating lunch with new friends, riding the bus home alone. Today, for the first time, I have given up the need for false pretense of everything being hunky-dory, and allowed my son to go off on new adventures of his own, while Jari and I syat home to play and enjoy the peace that life without Kaeden brings.
That may sound hard and disheartening, but standing in my shoes, you may view it differently. I am giving Kaeden the chance to have new experiences, while allowing us a chance at a break from autism for these hours while he is away. It is the first time I have used the school daycare, and upon his acceptance, decided that it is time. Kaeden needs the security of having people choose what he will do, a schedule which can be determined in a school setting much easier than at home. He can play and have his lunch and do what they have already scheduled into his day. Jari and I played Monopoly today, we colored little puppets and played knights. We watched a movie and ate when we were hungry. Jari is now outside hammering away on a 'secret' project.
Kaeden is not home to dictate what will happen throughout our day. His mood isn't determining what we can and cannot do. We don't have to worry that a fight is on the horizon, or that if he doesn't eat right now our lives will fall apart. We don't have to give him reign of the bank during our game, or let him pick which movie we will watch. We can just relax and let things come as they do, without the added strain on our shoulders.
I am happy that I made this choice. I am happy that I finally feel Kaeden is ready to make advances into society without mama by his side. I'm a bit nervous about his solo performance maneuvering the bus system, but confident that with th schedule in his pocket, he'll manage it okay. And Jari and I, well, my little guy is able to be just that...MY lil guy. No big brother to overshadow him. No autism to stand over his head. Just a kid and his mama having a fun, relaxed day at home (or at the park, or on a bike ride, or at the ice cream shop...we can choose without worry of meltdowns and anger and glassy eyed sensory overload). This is the first step in the right direction. For all of us.
It has been a long time coming. For many reasons, we haven't taken this forward step. There are waitlists and red tape to jump through. There was a mama afraid of letting her son go. Afriad of sending him off into the world. But, as Kaeden grows and his issues become more evident, I am finally free of that tight hold I had on him. Emotionally I cannot handle more problems. Physically I can't tackle the stress. And it is time...we can all fill our new roles with a sense of security and faith. We can all be a family, with our own agendas. With our own space. With our own freedom.
And when the time comes, this is the step that will lead to Kaeden leaving home, living on campus, having his own life, still in my heart, still with my concerns, but each of us able to be free. And come together again at the end of the experience with more patience, more energy, more smiles to share. And a lil guy who knows what it means to live without autism commanding his life. Where a kid can just be a kid.
Morning, afternoon, evening or night...life is always happening. Let me tell you what's happening in mine.
2.24.2009
2.16.2009
Autism Hope
I was getting a bit impatient. 2 o'clock had come and gone and our appointment was for 2. Then the phone rang: Hello, I'm sorry I'm running late. I'll be there at 2:30 if that works for you.
"No problem, see you then." I replied before replacing the receiver. Just enough time to go hang up Jari's clothes. I came back down at 2:20 still this weird feeling filling my stomach. I was both nervous and hopeful. Wanting change but leary of another 'help organisation'. And I wasn't exactly sure which organisation she was from. When 2:40 hit and she still wasn't here, I started pacing. Thinking: This is someone who works with autistic kids. How can she be this late when a kid with autism is sitting there waiting. Doesn't she know how worrisome that is for an autistic individual.
Granted, the appointment was only for me, but my nerves were on edge. I felt that grawing irritation that my son must regularly have to deal with. Every car that passed I ran to the window looking out...when finally at 2:47 she pulled up.
I answered the door with a smile. "Sorry for the delay. I am Anita," she said giving me a handshake. "Oh, no problem." I smiled at her. "That's how life is," I continued, wondering why I was putting on a false pretense of this being okay. Because, well, it was out of my hands, out of my control, and now she was here.
I led her to the couch where she asked me to discuss my son and what I felt were the most important issues we eneded to work on with him. Where she could maybe be of some assistance. "But," she added "You have to keep in mind we are not miracle workers, and the time we get with you will be minimal, so we can only do so much." My stomach started churning again. Then why are you here? I need a miracle. I need help. I need someone to take away all the pain and paint our faces with a smile. I need someone to fix our problems.
I told her about my boy. How our lives are in an uproar on a daily basis and we never feel relief from autism. How if it feels so overwhelming to us, what must it be like for him? How I don't trust my son, wory about what autism is doing to his little brother, the worries about whether my marriage can sustain through all the turmoils autism brings with it. I told her I have no faith in any of the organisations which offer help, even though I want to have faith, want to finally have someone give us what we need to help our son learn. Learn that stealing is not okay. Learn that it's okay to eat normally and there will always be enough. Learn that sex is natural but also private. Learn that there are authority figures whom we must obey.
And then, when I got done telling her all the things we need help with, a way to help Kaeden learn because he seems to be unable to grasp the concept of right from wrong, I started telling her more about my son. The things I love about him. How giving he is, how much he loves to help serve guests. How he makes little bead pictures for the neighbor lady, just because she smiles at him. How he never fails to befriend anyone he meets, whether in a grocery store line or walking down the street. How he isn't afraid to be who he is. How he doesn't judge anyone, how he grabs a game and sets it up knowing I will be there to play with him. How he still loves to sit on my lap and have me tuck him in at night, with songs, a story, and a kiss. How he still holds my hand when we walk in the city. How free he is to shout and run and play when we are out in the woods. How absolutely sweet he is with little kids and babies. How a baby animal on tv can send him into spasms of laughter, or tears. How sensitive he is to mama when she is sick or sad. How he loves to crank up the music as loud as he can and dance and sing when we drive in the car, his arms reaching out the window swaying with the beat. How he loves to prepare surprise meals for me and share a picnic.
My son is a treasure. He is a rough edged boy. But he is mine all mine and as much trouble as he has forced upon me, how much heartache I have lived due to his outrages, how much worry I have had to endure, the kid is such a treasure. Sometimes I forget to see through the daily struggles and look for the kid hiding behind those autism eyes. The one that brings me so much laughter, so many smiles, complete joy, a heat full of love. My son, my Kaeden.
"Goodbye, see you next week" I told the lady from the outreach program as she left my home. I closed the door behind her and stood in the hallway, lookign up the stairs. My son will be home soon. I can't wait to run to him and pull him into a hug. Let him feel how proud I am of him. Let him feel my love for him. I hope that when he arrives home, I will be able to touch him. I hope it won't be 'an autism day' and he pulls away. I hope his eyes will be clear and not shiny with the look of autism clouding them. I will make him a snack and have it ready and waiting on the table. That will make him happy. Then maybe I can plug into him before he runs to the comfort of the tv, sound blaring, out of reach. I am the mom of an autistic kid. My life revolves around hope.
"No problem, see you then." I replied before replacing the receiver. Just enough time to go hang up Jari's clothes. I came back down at 2:20 still this weird feeling filling my stomach. I was both nervous and hopeful. Wanting change but leary of another 'help organisation'. And I wasn't exactly sure which organisation she was from. When 2:40 hit and she still wasn't here, I started pacing. Thinking: This is someone who works with autistic kids. How can she be this late when a kid with autism is sitting there waiting. Doesn't she know how worrisome that is for an autistic individual.
Granted, the appointment was only for me, but my nerves were on edge. I felt that grawing irritation that my son must regularly have to deal with. Every car that passed I ran to the window looking out...when finally at 2:47 she pulled up.
I answered the door with a smile. "Sorry for the delay. I am Anita," she said giving me a handshake. "Oh, no problem." I smiled at her. "That's how life is," I continued, wondering why I was putting on a false pretense of this being okay. Because, well, it was out of my hands, out of my control, and now she was here.
I led her to the couch where she asked me to discuss my son and what I felt were the most important issues we eneded to work on with him. Where she could maybe be of some assistance. "But," she added "You have to keep in mind we are not miracle workers, and the time we get with you will be minimal, so we can only do so much." My stomach started churning again. Then why are you here? I need a miracle. I need help. I need someone to take away all the pain and paint our faces with a smile. I need someone to fix our problems.
I told her about my boy. How our lives are in an uproar on a daily basis and we never feel relief from autism. How if it feels so overwhelming to us, what must it be like for him? How I don't trust my son, wory about what autism is doing to his little brother, the worries about whether my marriage can sustain through all the turmoils autism brings with it. I told her I have no faith in any of the organisations which offer help, even though I want to have faith, want to finally have someone give us what we need to help our son learn. Learn that stealing is not okay. Learn that it's okay to eat normally and there will always be enough. Learn that sex is natural but also private. Learn that there are authority figures whom we must obey.
And then, when I got done telling her all the things we need help with, a way to help Kaeden learn because he seems to be unable to grasp the concept of right from wrong, I started telling her more about my son. The things I love about him. How giving he is, how much he loves to help serve guests. How he makes little bead pictures for the neighbor lady, just because she smiles at him. How he never fails to befriend anyone he meets, whether in a grocery store line or walking down the street. How he isn't afraid to be who he is. How he doesn't judge anyone, how he grabs a game and sets it up knowing I will be there to play with him. How he still loves to sit on my lap and have me tuck him in at night, with songs, a story, and a kiss. How he still holds my hand when we walk in the city. How free he is to shout and run and play when we are out in the woods. How absolutely sweet he is with little kids and babies. How a baby animal on tv can send him into spasms of laughter, or tears. How sensitive he is to mama when she is sick or sad. How he loves to crank up the music as loud as he can and dance and sing when we drive in the car, his arms reaching out the window swaying with the beat. How he loves to prepare surprise meals for me and share a picnic.
My son is a treasure. He is a rough edged boy. But he is mine all mine and as much trouble as he has forced upon me, how much heartache I have lived due to his outrages, how much worry I have had to endure, the kid is such a treasure. Sometimes I forget to see through the daily struggles and look for the kid hiding behind those autism eyes. The one that brings me so much laughter, so many smiles, complete joy, a heat full of love. My son, my Kaeden.
"Goodbye, see you next week" I told the lady from the outreach program as she left my home. I closed the door behind her and stood in the hallway, lookign up the stairs. My son will be home soon. I can't wait to run to him and pull him into a hug. Let him feel how proud I am of him. Let him feel my love for him. I hope that when he arrives home, I will be able to touch him. I hope it won't be 'an autism day' and he pulls away. I hope his eyes will be clear and not shiny with the look of autism clouding them. I will make him a snack and have it ready and waiting on the table. That will make him happy. Then maybe I can plug into him before he runs to the comfort of the tv, sound blaring, out of reach. I am the mom of an autistic kid. My life revolves around hope.
2.12.2009
Just A Different Kind of Tuesday
Tuesday, I woke early and got everyone off to school, work, and the train so I could share a day out with my girlfriend. We headed to a town not far from our normal haunt, but someplace else entirely and quickly realized we had made a mistake in our choosing. There was nothing to do. Not even any of the cafe's we came across were open. So, we walked through the rain and finally discovered a nature store open. Went in and had a peek around and ended up buying flaxseed oil. Why not give it a shot. Maybe I can remember something longer than a day. We then got back in the car and went to the outlet mall. There, we ended up shoe shopping, and though neither of us found anything we loved enough to buy (or was in our price range...darn Dolce and the 250 euro pink heels!), we had a fun time poking around. We made McD's our lunch stop, which was just what we both needed. Over lunch, the conversation was everything I needed. Girl talk. Two friends baring their hearts. A few misty eyes and many laughs. Friendship. Just what girls need. We headed back to the car in a flurry of snow that was already sticking to the pavement. Brrr....
And then we found the kringloopwinkel (second hand store). These are my very favroite places to shop. Sometimes you can find just what you need without knowing you needed it. I got a few English books which is always welcome, esp as I just finished my other 2 books this week. And a brand new set of Valentine's Day dice which I plan to extend to my husband and actually use them...Kiss, Lick, Touch...sounds like a winning combination to me. We'll see where it leads.
After dropping Lisa off at the train so she could return home, I headed to do some grocery shopping. I love grocery shopping when I have time and no kids with me. I can linger in the aisles and pick up bits and pieces while planing meals in my head. It's like a little excusrion for me. Pick up soem mushrooms, head to the meats, decide I don't need mushrooms and return them only to grab a piece of fresh ginger for something different. And since I wasn't hungry from my McD's lunch, not all that garbage made it's way into the cart. Which means it's also not littering my shelves givign me an opportunity to munch on junk the whole day through.
I then ran into yet another second hand store and found a BIG mailbox. Just what we need and have been considering buying for awhile. I was planning to hang it and surprise my husband. The tag said 4 euro: Keys at cashier. I paid for my mailbox feeling all proud about my terrific find, when I asked for the keys. Nope, no keys. Sorry. They pulled off teh sticker and handed me my box. I don't want it, I told them. What am I gonna do with a mailbox that has no key. Put a new lock on it, he told me. No thanks, too much work and expense for a used mailbox that will be scratched up by the time I am through getting a new lock on. Just retuen my money please. Easy to say, not so easy to do. I used my debit card and they didn't know how to credit the amount. Finally, after 15 minutes and me checking my watch as I had kids to pick up before daycare closed and another arrived home from the bus, I got the refund in change.
Off to pcik up the kids, got home and groceries put away. Kaeden made dinner, which he did amazingly well and completely alone. Spaghetti, with fresh mushrooms, tomatoes, peppers...his sauce turned out a bit runny, and his use of salt was too minimal, but otherwise it was delicious. Jari gave him a 9/10, and his eyes twinkled brightly!
Then we ran to pick Papa up from the train. Drove over our old bridge and looked at all teh trees they removed, all the piles of dirt for the arrival of our new bridge. Waited at the trainstation for a running-late train and danced and sang with my kids. The music was loud and thumping and my kids were happy little dance monsters as we all used our microphone hands to sing to our hearts content. Song on repeat...over and over...Lightning Crashes. We had fun. Saw Erwin walk out the other doors to our normal pick-up point, but we were parked in a differnt place today. Kaeden ran to get him and he climbed in back. The entire way home he did nothing but complain about my driving. Instead of getting irritated, I got sad. Why can't my husband just accept me. I nearly never drive...just once let me enjoy the experience, let me do it my way. I was going too slow, following the speed limit. We'd have been home by now if you wouldn't drive like an old lady. The happiness of my day out and play with my kids was stripped from me. The evening between us didn't improve and I ended up in bed early, anger stewing from within.
I realized my husband and I have some work to do on our relationship. Talked to him about it yesterday. We have to be kinder to each other, more giving, more accepting. Both of us have gotten to a point where we just don't care, trudge through life, not sharing those intimate moments with each other. It's time to crack down and put each otehr first, give our love and time, be happy together. I'm feeling refreshed, holding out hope for change, positive change.
So, that was my Tuesday. Just a little something different in my daily life. It was fun to be with a friend. It was fun to let loose with my kdis. It was fun to have use of the car. It was fun to shop. It was refreshing . A good day. And an even better future within my sight.
And then we found the kringloopwinkel (second hand store). These are my very favroite places to shop. Sometimes you can find just what you need without knowing you needed it. I got a few English books which is always welcome, esp as I just finished my other 2 books this week. And a brand new set of Valentine's Day dice which I plan to extend to my husband and actually use them...Kiss, Lick, Touch...sounds like a winning combination to me. We'll see where it leads.
After dropping Lisa off at the train so she could return home, I headed to do some grocery shopping. I love grocery shopping when I have time and no kids with me. I can linger in the aisles and pick up bits and pieces while planing meals in my head. It's like a little excusrion for me. Pick up soem mushrooms, head to the meats, decide I don't need mushrooms and return them only to grab a piece of fresh ginger for something different. And since I wasn't hungry from my McD's lunch, not all that garbage made it's way into the cart. Which means it's also not littering my shelves givign me an opportunity to munch on junk the whole day through.
I then ran into yet another second hand store and found a BIG mailbox. Just what we need and have been considering buying for awhile. I was planning to hang it and surprise my husband. The tag said 4 euro: Keys at cashier. I paid for my mailbox feeling all proud about my terrific find, when I asked for the keys. Nope, no keys. Sorry. They pulled off teh sticker and handed me my box. I don't want it, I told them. What am I gonna do with a mailbox that has no key. Put a new lock on it, he told me. No thanks, too much work and expense for a used mailbox that will be scratched up by the time I am through getting a new lock on. Just retuen my money please. Easy to say, not so easy to do. I used my debit card and they didn't know how to credit the amount. Finally, after 15 minutes and me checking my watch as I had kids to pick up before daycare closed and another arrived home from the bus, I got the refund in change.
Off to pcik up the kids, got home and groceries put away. Kaeden made dinner, which he did amazingly well and completely alone. Spaghetti, with fresh mushrooms, tomatoes, peppers...his sauce turned out a bit runny, and his use of salt was too minimal, but otherwise it was delicious. Jari gave him a 9/10, and his eyes twinkled brightly!
Then we ran to pick Papa up from the train. Drove over our old bridge and looked at all teh trees they removed, all the piles of dirt for the arrival of our new bridge. Waited at the trainstation for a running-late train and danced and sang with my kids. The music was loud and thumping and my kids were happy little dance monsters as we all used our microphone hands to sing to our hearts content. Song on repeat...over and over...Lightning Crashes. We had fun. Saw Erwin walk out the other doors to our normal pick-up point, but we were parked in a differnt place today. Kaeden ran to get him and he climbed in back. The entire way home he did nothing but complain about my driving. Instead of getting irritated, I got sad. Why can't my husband just accept me. I nearly never drive...just once let me enjoy the experience, let me do it my way. I was going too slow, following the speed limit. We'd have been home by now if you wouldn't drive like an old lady. The happiness of my day out and play with my kids was stripped from me. The evening between us didn't improve and I ended up in bed early, anger stewing from within.
I realized my husband and I have some work to do on our relationship. Talked to him about it yesterday. We have to be kinder to each other, more giving, more accepting. Both of us have gotten to a point where we just don't care, trudge through life, not sharing those intimate moments with each other. It's time to crack down and put each otehr first, give our love and time, be happy together. I'm feeling refreshed, holding out hope for change, positive change.
So, that was my Tuesday. Just a little something different in my daily life. It was fun to be with a friend. It was fun to let loose with my kdis. It was fun to have use of the car. It was fun to shop. It was refreshing . A good day. And an even better future within my sight.
2.09.2009
25 Things About Autism
I read this on a wonderfully informative, funny, and helpful blog I have been reading for a few months now http://teenautism.com/ . I thought I'd take her idea which she got off Facebook and give it a go. Thought it might help remind me how far we have come. So, here goes, my 25 list of autism.
1. WHERE DO YOU CURRENTLY LIVE? Belgium just over the Holland border
2. WHAT IS YOUR CHILD’S NAME, AGE AND DX? Kaeden, age 14, autism/ADHD/ODD (though this is just to help get services, so they say)
3. WAS YOUR CHILD PROPERLY DIAGNOSED?Yes, by more than a few psychiatrists. First when he was 8, then again when we moved to Belgium a year later, and once again in 2008 when he was in an inpatient hospital.
4. WHAT DID YOU THINK WHEN YOU FIRST LEARNED YOUR CHILD HAD AUTISM?I already knew somethign was wrong, but the term autism hit me pretty hard. I got the diagnosis a day before I was heading to America on vacation and didn't know what to do with it all. I held up fine until I called my mother and told her...then tears and frustration came flowing out. Why me? WHy him? What am I supposed to do now? (And these same questions still arise in my daily struggle yes, still, with this autism stuff)
5. WHAT IS THE HARDEST THING ABOUT HAVING A CHILD WITH ASD? Not knowing when he is incapable of comprehension and when he is using it to his advantage. The struggles between my husband and I regarding how to deal with him. The susceptible position of my youngest son dealing with his autistic brother.
6. WHAT IS THE BEST THING? How very giving my son is. He does not judge anyone and accepts all people regardless of background, race, religion, handicap, weight... That when we have a good day, it's a very good day for everyone and it really gives us a chance to feel like what I always imagined being a family was supposed to feel.
7. HAVE YOU TRIED THE DIET AND DID IT WORK?I haven't tried GF/CF. I have a hard enough time making it through each day without dealing with something that would cause me spasms...that's not to say we don't limit his intake of certain foods, but not totally GFCF.
8. WHAT ABOUT OTHER BIOMED TREATMENTS- HBOT, CHELATION, ETC.?I have been reading more about this stuff, but I'm not totally convinced and don't know what some of it is. I have already tried so much, and what will make it different this time around?
9. WHAT METHOD OF ABA/Behavior Therapy DO YOU LIKE BEST?Here in Europe, I haven't been given the exact term ABA...but we do use numerous forms of behavior modification. I think that the one that works best is rewarding Kaeden with games, either with us or computer, as he completes tasks which are daily essentials. The problem with Kaeden is that he quickly tires of routine (NOT typical autistic, i know), and these things work out only temporarily in most instances.
10. IF YOU COULD MAKE EVERY PARENT TRY ONE THING- WHAT WOULD IT BE?I don't think any autistic child is the same, so my best advice is to remember that what worked for one, won't necessarily work for another. You have to do what you feel is best for your child and just have faith with yourself. You do what you can afford, both financially and mentally, and you do it for your child. DOn't beat yourself up if you don't try everything out there. You have to make it work best for your family. That's not to say don't try new things...there is always room for improvement. But don't get puilled into having to try every latest new thing. Everything is not going to work.
11. WHAT DO YOU THINK THE RATE OF AUTISM REALLY IS?I just assume what I read is true...1 in 150 in the US. This scares me, but makes me more hopeful that they'll find the cause.
12. HOW MANY KIDS WITH AUTISM LIVE ON YOUR BLOCK?Kaeden. But there are at least 2 others I know of in our small village.
13. HAVE YOU EVER MET A RECOVERED CHILD?No, not yet.
14. WHAT KIND OF EDUCATIONAL PROGRAM DOES YOUR CHILD GET?Kaeden attends a school for handicapped children...all handicaps. Throughout grade school he was in an autism classroom with strict scheduling, but now in middle school he is in a mixed class which seems to suit him a bit better than the structure (yes, again, I know, not typical). He does relatively well in his studies though his behavior gets him into trouble. He is kept in separate areas for breaks and lunch to try to keep teh problems at bay. In his middle school program, he is in one of the lower levels of education. His studies will lead him to work in a social workplace. This is one of the very hardest concepts for me to come to terms with. I want him to be more 'accomplished'...but for me, more than for him. Kaeden reads at a 2nd grade level, but his math skills are much higher (though not as high as his age-level peers are currently at)
15. DO YOU GET SERVICES/TREATMENTS THROUGH YOUR HEALTH INSURANCE?Our health insurance is a government-wide social plan and this does benefit us as a family. Kaeden's services and treatments are always partially covered by insurance, though out of pocket expenses are still astronomical. The biggest problem is the extended wait-list for all services/treatments.
16. DO YOU THINK THE DIVORCE RATE IS REALLY 80% FOR ASD FAMILIES?That is very probable to me. Dealing with an autistic child takes a lot out of you individually, leaving little room to engage in marital relations. Plus, as in our case, we both want what is best for our son, but both have different ideas about how to reach that. And I also find myself needing someone to blame and in my fear and frustration my husband becomes the recipient of my anger. I know this is unfair and I know it isn't good for our marriage, but sometimes it's the only release I can seem to find.
17. DO YOU HAVE A GOOD POOP STORY?No good ones, but plenty of bad ones. Kaeden used to smear until the age of 9ish. That was always such a nice surprise, those decorated walls, blankets, furniture, floors. I don't miss those days at all. Today, he is about 90% daytime toilet trained and still wets the bed head-to-foot nightly, even with diapers.
18. WHAT IS THE STUPIDEST THING ANYONE HAS EVER SAID ABOUT YOUR CHILD?I can't think of any single example. However, I get so frustrated when I am telling people how awful I'm feeling and all they do is remind me how sweet he always is when they're around. Sometimes I just want someone to say "I Know"...even though I know they really don't know because they aren't living it.
19. WHAT DO YOU SAY WHEN SOMEONE ASKS “WHAT IS AUTISM?”I can talk for hours about what autism is, and how it affects my son and our family. Depends how deeply I know the person the level at which I explain it. Currently, I am trying to help my younger NT son understand autism. I think that when he gets big he'll be able to give a perfect one sentence definition having lived it his entire life.
20. WHO IS YOUR “AUTISM COMMUNITY HERO”?I love Tanya'sanswer here from her list. The siblings... my younger son. These kids have to deal with much more than they should have to living in an autistic family. They are forced into situations they should never have to endure. And they come out stronger because of it. I also admire the school counselor who, though I feel he lets Kaeden get away with too much, does everything in the best interest of his autistic compadres. He has been a guiding force in Kaeden's school career from the start, is at all the meetings, and puts his everything into making my son feel loved and involved. I really admire him for his work.
21. WHAT GROUP/ORGANIZATION DO YOU THINK HAS DONE THE MOST FOR THE COMMUNITY?Honestly, in our community, I'm not very happy with any of the organizations that deal directly with autism in which we have been involved. The one I have not yet used but hold a lot of hope out for is the Saturday daycare giving parents of kids with autism a break. We're going to start using their services soon.
22. DID YOU VACCINATE YOUR CHILD AND DO YOU CONTINUE TO DO SO?Yes and yes. I just don't know so just follow the guides. I'd hate for it not to be related and then end up with a deathly sick kid from somthing he could have been immunized against.
23. DOES YOUR FAMILY ACCEPT YOUR CHILD HAVING AUTISM?Yes, I am very vocal about my son's autism and have a very open relationship about it with my entire family, including extended. The majority of them are very supportive in our life with my son. Even those who have difficulties with my son seem to have come to terms with the fact that he is 'different' and are learning to accept that this is just how it is. Most though, do not have a clue hwo difficult life can be, and because they do not deal with it daily can't believe some of the stories I share with them. Others like to remind me (sometimes too often and too heartily) that Kaeden will never be who I dreamed for him to be. But all of them are loving and supportive of my son and our family.
24. WHAT LESSON HAVE YOU LEARNED AFTER ALL OF THIS?That patience really is the key and that patience is easily depleted. I also know that as the mother of an autistic kid, I too often let autism rule my life and overtake every piece of my emotionally. Parents need a break from autism. And couples need to share more than just autism together. And the siblings need to have time away from autism as well. And that when Kaeden is having a bad day, we're all gonna have a bad day. And there's just no getting around that.
25. IF YOU COULD GO BACK IN TIME. WOULD YOU CHOOSE FOR YOUR CHILD TO BE NEURO-TYPICAL?Completely honestly, yes. I just haven't totally come to terms with this whole autism thing yet. I hate how much pain it has inflicted on our family and my son. And I am scared of the future as well. I can't see a future that leads beyond the fights we are having today (not just together, but also with the system, the organisations, the 'help'). If Kaeden didn't have autism, our lives would be much more balanced. I don't wish he were another person, just that the side everyone else always sees was able to be ever-present. That he wouldn't hold it all in until he was safe at home and able to release it all. That I could just be a mom, and not the mom of an autistic kid. Becasue as much as I love my son, it's very hard, draining work. And sometimes, I can't see the end of the tunnel.
1. WHERE DO YOU CURRENTLY LIVE? Belgium just over the Holland border
2. WHAT IS YOUR CHILD’S NAME, AGE AND DX? Kaeden, age 14, autism/ADHD/ODD (though this is just to help get services, so they say)
3. WAS YOUR CHILD PROPERLY DIAGNOSED?Yes, by more than a few psychiatrists. First when he was 8, then again when we moved to Belgium a year later, and once again in 2008 when he was in an inpatient hospital.
4. WHAT DID YOU THINK WHEN YOU FIRST LEARNED YOUR CHILD HAD AUTISM?I already knew somethign was wrong, but the term autism hit me pretty hard. I got the diagnosis a day before I was heading to America on vacation and didn't know what to do with it all. I held up fine until I called my mother and told her...then tears and frustration came flowing out. Why me? WHy him? What am I supposed to do now? (And these same questions still arise in my daily struggle yes, still, with this autism stuff)
5. WHAT IS THE HARDEST THING ABOUT HAVING A CHILD WITH ASD? Not knowing when he is incapable of comprehension and when he is using it to his advantage. The struggles between my husband and I regarding how to deal with him. The susceptible position of my youngest son dealing with his autistic brother.
6. WHAT IS THE BEST THING? How very giving my son is. He does not judge anyone and accepts all people regardless of background, race, religion, handicap, weight... That when we have a good day, it's a very good day for everyone and it really gives us a chance to feel like what I always imagined being a family was supposed to feel.
7. HAVE YOU TRIED THE DIET AND DID IT WORK?I haven't tried GF/CF. I have a hard enough time making it through each day without dealing with something that would cause me spasms...that's not to say we don't limit his intake of certain foods, but not totally GFCF.
8. WHAT ABOUT OTHER BIOMED TREATMENTS- HBOT, CHELATION, ETC.?I have been reading more about this stuff, but I'm not totally convinced and don't know what some of it is. I have already tried so much, and what will make it different this time around?
9. WHAT METHOD OF ABA/Behavior Therapy DO YOU LIKE BEST?Here in Europe, I haven't been given the exact term ABA...but we do use numerous forms of behavior modification. I think that the one that works best is rewarding Kaeden with games, either with us or computer, as he completes tasks which are daily essentials. The problem with Kaeden is that he quickly tires of routine (NOT typical autistic, i know), and these things work out only temporarily in most instances.
10. IF YOU COULD MAKE EVERY PARENT TRY ONE THING- WHAT WOULD IT BE?I don't think any autistic child is the same, so my best advice is to remember that what worked for one, won't necessarily work for another. You have to do what you feel is best for your child and just have faith with yourself. You do what you can afford, both financially and mentally, and you do it for your child. DOn't beat yourself up if you don't try everything out there. You have to make it work best for your family. That's not to say don't try new things...there is always room for improvement. But don't get puilled into having to try every latest new thing. Everything is not going to work.
11. WHAT DO YOU THINK THE RATE OF AUTISM REALLY IS?I just assume what I read is true...1 in 150 in the US. This scares me, but makes me more hopeful that they'll find the cause.
12. HOW MANY KIDS WITH AUTISM LIVE ON YOUR BLOCK?Kaeden. But there are at least 2 others I know of in our small village.
13. HAVE YOU EVER MET A RECOVERED CHILD?No, not yet.
14. WHAT KIND OF EDUCATIONAL PROGRAM DOES YOUR CHILD GET?Kaeden attends a school for handicapped children...all handicaps. Throughout grade school he was in an autism classroom with strict scheduling, but now in middle school he is in a mixed class which seems to suit him a bit better than the structure (yes, again, I know, not typical). He does relatively well in his studies though his behavior gets him into trouble. He is kept in separate areas for breaks and lunch to try to keep teh problems at bay. In his middle school program, he is in one of the lower levels of education. His studies will lead him to work in a social workplace. This is one of the very hardest concepts for me to come to terms with. I want him to be more 'accomplished'...but for me, more than for him. Kaeden reads at a 2nd grade level, but his math skills are much higher (though not as high as his age-level peers are currently at)
15. DO YOU GET SERVICES/TREATMENTS THROUGH YOUR HEALTH INSURANCE?Our health insurance is a government-wide social plan and this does benefit us as a family. Kaeden's services and treatments are always partially covered by insurance, though out of pocket expenses are still astronomical. The biggest problem is the extended wait-list for all services/treatments.
16. DO YOU THINK THE DIVORCE RATE IS REALLY 80% FOR ASD FAMILIES?That is very probable to me. Dealing with an autistic child takes a lot out of you individually, leaving little room to engage in marital relations. Plus, as in our case, we both want what is best for our son, but both have different ideas about how to reach that. And I also find myself needing someone to blame and in my fear and frustration my husband becomes the recipient of my anger. I know this is unfair and I know it isn't good for our marriage, but sometimes it's the only release I can seem to find.
17. DO YOU HAVE A GOOD POOP STORY?No good ones, but plenty of bad ones. Kaeden used to smear until the age of 9ish. That was always such a nice surprise, those decorated walls, blankets, furniture, floors. I don't miss those days at all. Today, he is about 90% daytime toilet trained and still wets the bed head-to-foot nightly, even with diapers.
18. WHAT IS THE STUPIDEST THING ANYONE HAS EVER SAID ABOUT YOUR CHILD?I can't think of any single example. However, I get so frustrated when I am telling people how awful I'm feeling and all they do is remind me how sweet he always is when they're around. Sometimes I just want someone to say "I Know"...even though I know they really don't know because they aren't living it.
19. WHAT DO YOU SAY WHEN SOMEONE ASKS “WHAT IS AUTISM?”I can talk for hours about what autism is, and how it affects my son and our family. Depends how deeply I know the person the level at which I explain it. Currently, I am trying to help my younger NT son understand autism. I think that when he gets big he'll be able to give a perfect one sentence definition having lived it his entire life.
20. WHO IS YOUR “AUTISM COMMUNITY HERO”?I love Tanya'sanswer here from her list. The siblings... my younger son. These kids have to deal with much more than they should have to living in an autistic family. They are forced into situations they should never have to endure. And they come out stronger because of it. I also admire the school counselor who, though I feel he lets Kaeden get away with too much, does everything in the best interest of his autistic compadres. He has been a guiding force in Kaeden's school career from the start, is at all the meetings, and puts his everything into making my son feel loved and involved. I really admire him for his work.
21. WHAT GROUP/ORGANIZATION DO YOU THINK HAS DONE THE MOST FOR THE COMMUNITY?Honestly, in our community, I'm not very happy with any of the organizations that deal directly with autism in which we have been involved. The one I have not yet used but hold a lot of hope out for is the Saturday daycare giving parents of kids with autism a break. We're going to start using their services soon.
22. DID YOU VACCINATE YOUR CHILD AND DO YOU CONTINUE TO DO SO?Yes and yes. I just don't know so just follow the guides. I'd hate for it not to be related and then end up with a deathly sick kid from somthing he could have been immunized against.
23. DOES YOUR FAMILY ACCEPT YOUR CHILD HAVING AUTISM?Yes, I am very vocal about my son's autism and have a very open relationship about it with my entire family, including extended. The majority of them are very supportive in our life with my son. Even those who have difficulties with my son seem to have come to terms with the fact that he is 'different' and are learning to accept that this is just how it is. Most though, do not have a clue hwo difficult life can be, and because they do not deal with it daily can't believe some of the stories I share with them. Others like to remind me (sometimes too often and too heartily) that Kaeden will never be who I dreamed for him to be. But all of them are loving and supportive of my son and our family.
24. WHAT LESSON HAVE YOU LEARNED AFTER ALL OF THIS?That patience really is the key and that patience is easily depleted. I also know that as the mother of an autistic kid, I too often let autism rule my life and overtake every piece of my emotionally. Parents need a break from autism. And couples need to share more than just autism together. And the siblings need to have time away from autism as well. And that when Kaeden is having a bad day, we're all gonna have a bad day. And there's just no getting around that.
25. IF YOU COULD GO BACK IN TIME. WOULD YOU CHOOSE FOR YOUR CHILD TO BE NEURO-TYPICAL?Completely honestly, yes. I just haven't totally come to terms with this whole autism thing yet. I hate how much pain it has inflicted on our family and my son. And I am scared of the future as well. I can't see a future that leads beyond the fights we are having today (not just together, but also with the system, the organisations, the 'help'). If Kaeden didn't have autism, our lives would be much more balanced. I don't wish he were another person, just that the side everyone else always sees was able to be ever-present. That he wouldn't hold it all in until he was safe at home and able to release it all. That I could just be a mom, and not the mom of an autistic kid. Becasue as much as I love my son, it's very hard, draining work. And sometimes, I can't see the end of the tunnel.
2.06.2009
Strength
Sometimes, it really takes a major event to make you look at your life and be thankful. Some of the most tragic occurrences give us the chance to rethink what is meaningful and important, help us stand up and get on the right track. This happened to me this week.
My gramma is someone with whom I have a very deep connection and bond. She is someone I have cried to and laughed with throughout the years, someone who has been steady adn ever-present in my life. And we have an even greater connection since I moved to Europe, where her roots are. She was a real-life little orphan Annie, and grew up in an orphanage outside London from the time she was just a baby. At the age of 16 she was released to help out as a seamstress during the war. She tells stories of this period of her life and I cannot imagine the courage and strength she needed to just get through each day. Of bombs going off and sirens blaring as she ran from place to place looking for shelter. And yet, during this crisis, she managed to meet and fall in love with my grampa. At teh age of 19, she left her life in England behind for the life of a farmer's wife in Wisconsin. And so the story goes.
Wednesday, my gramma was rushed by ambulance to the hospital. She had suffered a stroke and was in critical condition. Her strength has stayed with her, and yesterday evening she was conscious and seemed to be recovering. Feeling in her arms was restored, her voice came back though not completely clear. I spoke to her as someone held the phone to her ear and I heard the stuttered, quiet words that made me once again able to breathe: I love you sweetheart.
When you think that someone you love is being ripped from your life, another you steps up to the plate. Someone with more courage and more understanding and a deeper sense of reality. The despair and sadness leaves youa s you fight to establish a sense of rightness in your world. You strive to be a better person with hopes that someone else may be spared, as well as you in the process. You realize that the only thing that matters is those that you love. Nothing else is as important.
Today, I called my gramma's sister. She is 89 years young and still lives in London. I was to be the first to share this news with her...and I was frightened because though they are half-a-world apart, these two sisters are close. I didn't want to give her worry. As I heard her voice on the other end of the line, I suddenly got a wave of strength as I promised her that her sister';s health was improving, that she should be fine, that there is no reason to worry. During this call, I awakened myself to the promise that these things I was saying were true. My gramma is still alive. I still have a chance to share more of life with her. I am happy this is true.
What hit me even stronger, though, was that I made the connection that this will, in time, if not today, become a reality for me. I will lose someone I love. I will come to terms with their presence missing from my life. But I don't have to lose that person entirely. All the memories of the times we have shared are stored in my mind. All that they have passed onto me are alive in the form I take and the manner in which I live my life. If I am strong, so were they strong. If I am weak, I am failing what they tried to give me in their time on earth.
Today, my gramma is here on earth with me. I am thankful for her strength. But when the day comes that I must continue on without her, I will remember all she taught me and bring her back to life in the happiness and faith with which I lead my own life. I have learned so very much from her. And the thing I know without hesitation is that she is a woman of great strength and courage, and she would insist on me being the same. Today, I hold my shoulders tall with a smile on my face as I try to be just a little bit of the woman she was...and continues to be.
My gramma is someone with whom I have a very deep connection and bond. She is someone I have cried to and laughed with throughout the years, someone who has been steady adn ever-present in my life. And we have an even greater connection since I moved to Europe, where her roots are. She was a real-life little orphan Annie, and grew up in an orphanage outside London from the time she was just a baby. At the age of 16 she was released to help out as a seamstress during the war. She tells stories of this period of her life and I cannot imagine the courage and strength she needed to just get through each day. Of bombs going off and sirens blaring as she ran from place to place looking for shelter. And yet, during this crisis, she managed to meet and fall in love with my grampa. At teh age of 19, she left her life in England behind for the life of a farmer's wife in Wisconsin. And so the story goes.
Wednesday, my gramma was rushed by ambulance to the hospital. She had suffered a stroke and was in critical condition. Her strength has stayed with her, and yesterday evening she was conscious and seemed to be recovering. Feeling in her arms was restored, her voice came back though not completely clear. I spoke to her as someone held the phone to her ear and I heard the stuttered, quiet words that made me once again able to breathe: I love you sweetheart.
When you think that someone you love is being ripped from your life, another you steps up to the plate. Someone with more courage and more understanding and a deeper sense of reality. The despair and sadness leaves youa s you fight to establish a sense of rightness in your world. You strive to be a better person with hopes that someone else may be spared, as well as you in the process. You realize that the only thing that matters is those that you love. Nothing else is as important.
Today, I called my gramma's sister. She is 89 years young and still lives in London. I was to be the first to share this news with her...and I was frightened because though they are half-a-world apart, these two sisters are close. I didn't want to give her worry. As I heard her voice on the other end of the line, I suddenly got a wave of strength as I promised her that her sister';s health was improving, that she should be fine, that there is no reason to worry. During this call, I awakened myself to the promise that these things I was saying were true. My gramma is still alive. I still have a chance to share more of life with her. I am happy this is true.
What hit me even stronger, though, was that I made the connection that this will, in time, if not today, become a reality for me. I will lose someone I love. I will come to terms with their presence missing from my life. But I don't have to lose that person entirely. All the memories of the times we have shared are stored in my mind. All that they have passed onto me are alive in the form I take and the manner in which I live my life. If I am strong, so were they strong. If I am weak, I am failing what they tried to give me in their time on earth.
Today, my gramma is here on earth with me. I am thankful for her strength. But when the day comes that I must continue on without her, I will remember all she taught me and bring her back to life in the happiness and faith with which I lead my own life. I have learned so very much from her. And the thing I know without hesitation is that she is a woman of great strength and courage, and she would insist on me being the same. Today, I hold my shoulders tall with a smile on my face as I try to be just a little bit of the woman she was...and continues to be.
2.02.2009
GSM
Let me set the scenario: Opa picks up his cell phone from the cupboard. The boys are there, being little snots, trying to play keep-away with his phone. Opa says: You don't try to take someone's phone. (Or something like that...I was only kinda half-involved in the encounter, so I dunno the ENTIRE story...but just something like this...you get the idea....)
Jari: That's not a phone. It's a GSM!
(GSM is the term used for cell phone here...dunno what they call it in the US. Just like texting is called SMS here. See why I am falling behind teh US jargon and have no idea what people are talking about 1/2 the time?)
Jari: That's not a phone. It's a GSM!
(GSM is the term used for cell phone here...dunno what they call it in the US. Just like texting is called SMS here. See why I am falling behind teh US jargon and have no idea what people are talking about 1/2 the time?)
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