I was talking to a friend about her pregnancy. She was mentioning the test for Downes and how she didn't want it because she wanted whatever child she was carrying. Which got me to thinking: If there was a test for Autism, would I have taken it? Would I have elected not to have my children?
Knowing what I do now, I cannot picture a world without my children. But to be frank, knowing how I was back then, I'm not sure how I would have reacted.
It's a roll of the dice on what we're given. Life is a gamble. You could have a perfectly 'normal' child and something happens. They fall off playground equipment, or get into a car accident. Then what? But to be given a choice about stopping it all before the heartache begins....That's a biggie.
I know my husband has had the hardest time adjusting to our family life. He's not a saint, but he's also not a pig. He's human. I grew up with a mother who was a nurse. She worked in nursing homes, and did home health. I saw a number of society's cast-offs that were not given a chance. My heart went out to them and my horizon was broadened. Not everyone grows up with that. Not everyone is exposed to the other side. As a society, we have gotten better about being more forthcoming on our problems. We have done away with sanitariums or institutions. But we still have a long way to go. And with the rise of Autism, we're going to have to hit a growth spurt fast.
From the moment you find out you're pregnant, many things come into mind. First you want to know what you're having: boy, girl, twins? You stock your home with baby-proofing equipment that takes a team of Seals to figure out how to get that pan out of the cabinet. There's the whole debate on baby names, nursery themes, who's nose do they have.
Then one day, the world moves in a different direction. Your heart catches in a squeeze that gives you pause and you can't breathe. Your child is different. Not the different that you were hoping for. You wonder, "What have I done?" Even knowing what I did. Taking our son to the doctor and basically finishing his sentence for him when he said, "Your son has..." Autism. I knew. And I cried to have it official.
You can sit on the couch, eating away your sorrows. Let your son sit off in his own world. Life is easier when you just let him be. Get stuck in thought about what medications you took or food you ate that might have broken your baby. Or...
You can take your child's life into your hands and become their advocate. Because they are in this world now. What you do with them is the legacy you leave behind. From this moment on, you have to move forward.
You have to make peace with yourself, the situation, and most importantly your child. It's a healing that has to happen. Like I said, my husband had the hardest time coping with this. While I was working with our son, he was getting mad at the things Boogs would repeatedly do wrong: not flushing the toilet, wetting the bed, asking for things over and over. My husband hadn't made peace with the idea that our son was not going to be a cookie cut-out little boy. Football would take hours to explain and was more confusing than enjoying. Boogs couldn't even catch a ball. My husband was a good father up to this point. He would hold our children if they fell. He played with them. He just got frustrated over what he thought was unexplainable or nonsense crying. Although, he never admitted it, he never felt connected to them.
Then one day, I had asked Boogs what he wanted to be when he grew up. This whole colorful world opened up. He started describing a farm, horses, pigs, tractors, and monkeys (see, he's a typical boy). So, I called my husband and told Boogs to tell his daddy. After seven years, it was the first time either had talked to one another. I never realized that they had never really talked before. When I got back on the phone my husband cried. He cried for all the time he had lost with this boy. He cried for not seeing this new person. They had finally found some common ground. And he made his peace.
It is important that we, as the role models for our children, come to terms with what we are given. Talk to someone. Go to therapy. Whatever it takes to move forward. That's the first step to helping your child. You're not alone.
Wednesday, November 30, 2011
Combating Sounds
My son never showed even a flinch with loud noises. So, when I found out he had issues with sound, I was surprised. It really baffles me how much an ice cream headache feels and how long my son had been feeling that way. He had to have gone through it several times a day. And I'm sure if you've had to set through an hour of lunch in a cafeteria, feeling that level of pain, you would have an absolute melt down. Yet, he never did, because with his Asperger's, he believes you have to do everything you are told. He's all about pleasing adults. So, he didn't want to upset us by saying anything.
If you suspect your child might have issues with sound here are some tips:
1. Talk to them. If they have the ability to tell you when something hurts, ask them if it does. Present a sound and ask if they like it, or it bothers them. Try it with the volume. Obviously, don't torture them, but do it in a way that the answer is easy.
2. Watch them. I never saw my son react immediately to noises, but I did notice that he wanted 'quiet time' when he'd get home from school. Or he would be totally exhausted after being in a store. There were days that he would leave the volume off to play his games. On a chaotic day, he would get frustrated easily with every thing he normally enjoyed. He very rarely talked about school. When asked what he did he would say, "Play and work. Work and play." But a theme started, where he would talk about a school fire drill, or seeing a fire truck but he would talk mostly about the horn, or that one of his classmates was crying. Try to pick up on patterns. Do they cry or get frustrated before you are about to go somewhere? Do they do this every time? Do the places seem to be the same noise-wise?
3. See if they like having on ear phones. Sometimes it's not the volume of sound, but it's the amount of sound coming at them all at once.
After I started working on ways to help my son combat noise pollution, I found these little items. The B-Calm MP3 player, my husband's ear protectors, and while at a hardware store, I found ear plugs that come in different colors. Sometimes, my son likes for me to play a soothing CD when he goes to bed. Other nights, it's complete silence he wants. The number one thing is to think outside the box. A little thicker curtain on their windows. Put their bedroom in a quieter part of the house.
We were at a grocery store and the baggers were high school students. My son had grown to love wearing his ear muffs/protectors in the store. When we got to the register, the baggers were looking and laughing at my son (they thought they were being subtle). It was awful. Now my son won't wear his ear protection in public. So, we've started using swimmers' wax that blends in a little better. I also carry cotton balls. (BTW, the store manager and company were notified).
Most kids are listening to some sort of device now. Having just the plugs for headphones in works if they're old enough. However, be careful if they are listening to something. Check the package to see if it's a child-safe headphone. They have a volume limit. Adult headphones do not. Our daughter is completely opposite of our son and will max out the volume to drown out the world.
If you suspect your child might have issues with sound here are some tips:
1. Talk to them. If they have the ability to tell you when something hurts, ask them if it does. Present a sound and ask if they like it, or it bothers them. Try it with the volume. Obviously, don't torture them, but do it in a way that the answer is easy.
2. Watch them. I never saw my son react immediately to noises, but I did notice that he wanted 'quiet time' when he'd get home from school. Or he would be totally exhausted after being in a store. There were days that he would leave the volume off to play his games. On a chaotic day, he would get frustrated easily with every thing he normally enjoyed. He very rarely talked about school. When asked what he did he would say, "Play and work. Work and play." But a theme started, where he would talk about a school fire drill, or seeing a fire truck but he would talk mostly about the horn, or that one of his classmates was crying. Try to pick up on patterns. Do they cry or get frustrated before you are about to go somewhere? Do they do this every time? Do the places seem to be the same noise-wise?
3. See if they like having on ear phones. Sometimes it's not the volume of sound, but it's the amount of sound coming at them all at once.
After I started working on ways to help my son combat noise pollution, I found these little items. The B-Calm MP3 player, my husband's ear protectors, and while at a hardware store, I found ear plugs that come in different colors. Sometimes, my son likes for me to play a soothing CD when he goes to bed. Other nights, it's complete silence he wants. The number one thing is to think outside the box. A little thicker curtain on their windows. Put their bedroom in a quieter part of the house.
We were at a grocery store and the baggers were high school students. My son had grown to love wearing his ear muffs/protectors in the store. When we got to the register, the baggers were looking and laughing at my son (they thought they were being subtle). It was awful. Now my son won't wear his ear protection in public. So, we've started using swimmers' wax that blends in a little better. I also carry cotton balls. (BTW, the store manager and company were notified).
Most kids are listening to some sort of device now. Having just the plugs for headphones in works if they're old enough. However, be careful if they are listening to something. Check the package to see if it's a child-safe headphone. They have a volume limit. Adult headphones do not. Our daughter is completely opposite of our son and will max out the volume to drown out the world.
One More Piece to the Puzzle
I started this blog because I've bounced all over the web, finding little pieces of information here and there, about things that can help my children. Life with my children seemed to be in the hands of doctors and therapists. I would take their advice and try it out at home. Some things worked, others didn't. I never thought I could have a huge impact on changing the course of their Autism. However, in January I found I was very wrong.
Our son had always been a very compliant child. He never seemed to complain as much as other children. He never threw the big tantrums that you hear other children do with his condition. I never suspected that he could have the sensory issues. That was always a sticky point when talking to his doctors. He had his 'quirks' but all the other symptoms that the DSM wanted seemed to have alluded his version of Autism.
It was a Christmas gift that changed our world.
My son had a sleep disorder that no one could figure out. From the time he was born, he would sleep for 14 hours and wake up exhausted. He was on stimulants to help him make it through school. And if he didn't eat dinner by a set time, he was too tired to make it through. He had two sleep studies conducted. On the second, he was sleeping through the techs putting the nodes on him. It was frightening.
The doctors had also diagnosed him with ADHD on top of his Asperger's. And aside from not having tantrums, he really did seem to have it. But my instincts were saying nothing was adding up.
For Christmas last year, my brother got my son an MP3 player, specifically designed for ADHD and Asperger's. Abet it came in January. My son tried it out and refused to take it off for three days. He even wanted to sleep with it on. On the second day, my son and I were at the store when he overheard a woman say that she had a headache. He took off his headphones and tried to give them to her. He said, "This works on headaches."
We had a long talk that night. I questioned everything he said about having headaches. Come to find out, he had extensive sensory issues. He said the pain was like an ice cream headache in the school cafeteria, sometimes his classroom, and...wait for it....my singing (great, nothing like abusing your kids to Ba-Ba Blacksheep). He said that when he heard loud noises that it shut down his brain. The way he described it was like static on a TV.
This was AMAZING!!! I immediately started researching sensory issues I might have missed. I bought CDs for the car for him to listen to. I asked how he felt about the volume on the TV. I asked his teachers to let him use the player at school. And for the first time since he was born, about a month into my experiment, my son woke up. Really woke up. He was alert, no bags under his eyes, no more stimulants.
For almost three years we had been taking my son to a neurologist. Because of his extreme fatigue, he had seizures. Of course we didn't know that's what had caused it. The neurologist was the one to insist that he had ADHD. I was against putting my son on medicine for it, but the neurologist had lectured me, and I still agree with his stance. "How can you tell you child to be normal, if his brain has no way of knowing what normal is." This is really true. You can't beat or punish your child into behaving if they don't understand the concept. With that being said, if your instincts are saying something else....get a second or third opinion. So, in February, my son and I did the hour trek to the neurologist's office. My son now looking like he was fresh from a long nap. And the neurologist looked at me when I told him that my son no longer needed the meds, and he said, "No. He doesn't need ADHD medication. That boy is not ADHD. Who has been telling you that he's ADHD?"
I'm not here to judge. I'm not for or against medicine. I believe in doctors and medicine. I believe there is a balance that only you can make the judgement call for what is right with your family. But I was ready to ring this guy's neck. I can't tell you the hours of driving, and how guilty I had felt about our son. It boils down to one thing: I cannot blame the doctor. I can only blame myself. Just as I got mad at the doctor for not listening to me, I should have listened to myself and my son.
I felt like a heel. There had been little signs. But I had missed them. This is when I learned to listen, even when there weren't words.
Our son had always been a very compliant child. He never seemed to complain as much as other children. He never threw the big tantrums that you hear other children do with his condition. I never suspected that he could have the sensory issues. That was always a sticky point when talking to his doctors. He had his 'quirks' but all the other symptoms that the DSM wanted seemed to have alluded his version of Autism.
It was a Christmas gift that changed our world.
My son had a sleep disorder that no one could figure out. From the time he was born, he would sleep for 14 hours and wake up exhausted. He was on stimulants to help him make it through school. And if he didn't eat dinner by a set time, he was too tired to make it through. He had two sleep studies conducted. On the second, he was sleeping through the techs putting the nodes on him. It was frightening.
The doctors had also diagnosed him with ADHD on top of his Asperger's. And aside from not having tantrums, he really did seem to have it. But my instincts were saying nothing was adding up.
For Christmas last year, my brother got my son an MP3 player, specifically designed for ADHD and Asperger's. Abet it came in January. My son tried it out and refused to take it off for three days. He even wanted to sleep with it on. On the second day, my son and I were at the store when he overheard a woman say that she had a headache. He took off his headphones and tried to give them to her. He said, "This works on headaches."
We had a long talk that night. I questioned everything he said about having headaches. Come to find out, he had extensive sensory issues. He said the pain was like an ice cream headache in the school cafeteria, sometimes his classroom, and...wait for it....my singing (great, nothing like abusing your kids to Ba-Ba Blacksheep). He said that when he heard loud noises that it shut down his brain. The way he described it was like static on a TV.
This was AMAZING!!! I immediately started researching sensory issues I might have missed. I bought CDs for the car for him to listen to. I asked how he felt about the volume on the TV. I asked his teachers to let him use the player at school. And for the first time since he was born, about a month into my experiment, my son woke up. Really woke up. He was alert, no bags under his eyes, no more stimulants.
For almost three years we had been taking my son to a neurologist. Because of his extreme fatigue, he had seizures. Of course we didn't know that's what had caused it. The neurologist was the one to insist that he had ADHD. I was against putting my son on medicine for it, but the neurologist had lectured me, and I still agree with his stance. "How can you tell you child to be normal, if his brain has no way of knowing what normal is." This is really true. You can't beat or punish your child into behaving if they don't understand the concept. With that being said, if your instincts are saying something else....get a second or third opinion. So, in February, my son and I did the hour trek to the neurologist's office. My son now looking like he was fresh from a long nap. And the neurologist looked at me when I told him that my son no longer needed the meds, and he said, "No. He doesn't need ADHD medication. That boy is not ADHD. Who has been telling you that he's ADHD?"
I'm not here to judge. I'm not for or against medicine. I believe in doctors and medicine. I believe there is a balance that only you can make the judgement call for what is right with your family. But I was ready to ring this guy's neck. I can't tell you the hours of driving, and how guilty I had felt about our son. It boils down to one thing: I cannot blame the doctor. I can only blame myself. Just as I got mad at the doctor for not listening to me, I should have listened to myself and my son.
I felt like a heel. There had been little signs. But I had missed them. This is when I learned to listen, even when there weren't words.
Monday, November 28, 2011
Can Anyone Hear Me?
Have you ever had the feeling that your life is like the movies....that moment when the person is walking and the rest of world is moving at hyper speed? Or you're on the quick-step conveyor at the airport? That's what my life feels like. I'm moving at the right speed, but the world is on a completely different level. I'm a stay-at-home mom. Not a soccer mom. Not a bake-cookies-Donna-Reed-mom. I suck at doing home chores. I'm domestically challenged. I make the neighbors talk about my marriage because I like working on our cars to save a penny. I don't obsess about my appearance. A good day at work usually means I've changed the brakes, rotors, and got rid of some funky smell in my son's bedroom. I miss a regular job. I hate the condescending people that think I stay at home to avoid work, some traditional feminine role, or am just lazy.
I've tried going back to work. I used to work hard. I loved my career. I joke with my husband that if I hadn't given up my career that I would have never gotten married and definitely wouldn't have stopped for children. But before you say, "You choose to quit." I didn't. I had a medical condition that precluded my job effectiveness. I was also told if I wanted to have children I should. At that time, my doctor said that if I wanted to have children, I needed to do it before I got worse. He didn't think I would live to be 40 (he didn't share this snippet with me then). It was my pregnancy with my son that seemed to have 'fixed' whatever was wrong. Six months in the pregnancy my heart was totally normal. After over five years of having a mystery heart problem, it just stopped being broken. No one knows why. But by then, I was committed to my son.
I am a stay-at-home mom because I choose to make my children my first priority. My children have Asperger's. I am an Aspie Mama. Very proud. I may make off-color jokes in the upcoming posts, but trust me, I, by no means, think that the epidemic is funny. I don't think those things my children struggle with are to be taken lightly. I do believe that you have to laugh or spend your life in the dark. The things my children do are wonderful. Every day with them is a blessing and every day they embark on a challenging adventure that I cannot fathom how hard it must be. So, I know, anyone can post comments and snipe, but until you have stood a day in my shoes, you are the ones that need to reevaluate your judgements.
Like I said before, I miss working. However, a typical week in our house consists of five days a week of ABA therapy, three hours, every evening. Usually there's two doctor's appointments on a slow week. Sometimes, I'm running two doctor's appointments a day. Drives are usually over an hour. Then there's the typical household concerns. Groceries, laundry, meals, and all that. I seriously admire parents that are able to work and do it all.
Did I know I would have "special" children when I first got pregnant? No. I was going to see them through the toddler years while I went back to school. My son was three weeks old when he needed surgery. That was scary. The surgery was simple but the doctors were concerned he wouldn't make it through the anesthesia. We knew he would need another surgery (ended up being two). So, I dropped out of school. These were 'minor' surgeries. Minor being that they didn't involve the heart. Never is watching your baby go through this minor.
When my son was nine months old, I would sit around with other moms with like-aged babies. I'd hear them throw out stories on their brainiacs. Future Einsteins. I was so enamored with my boy, but I wasn't about to start bragging on what I thought were typical baby happenings. Jane might say her son started talking. I wouldn't say, "Really?! Just talking? My boy is saying his alphabet and he's nine months old." I didn't because Jane's son was throwing a ball and mine could barely walk in a straight line without tripping. I figured everyone has their strengths. I didn't know that babies could like cartoons and usually didn't become obsessed with the ticker on the Bloomberg Channel instead.
It wasn't until I had our daughter that the differences started to become glaring. The irony is that we thought there was something wrong with our daughter. Why is she not talking by four months? Why doesn't she like letters at six months? What is wrong? However, our daughter screamed all the time. Colic. She screamed 20 hours a day. She screamed until she sweat. She screamed until she was hoarse. That was sometimes a relief for me. We changed formulas. We went to doctor after doctor.
I have to back it up a little bit. When my daughter was three weeks old, she, too, needed the same surgery. The blessing was this time the doctors listened to me and she didn't get nearly as sick as my son. Her surgery went with little worry.
When my daughter was two, she was still screaming. Now, she would scream and bite until she shook. Usually her brother. By this point, both children were having problems with speech. My daughter was barely saying one or two word sentences at two. My son would say one word and roll his tongue for the rest of the sentence, waving his expressive hands like he was having a full blown conversation. Each had a strength and a weakness, like puzzles pieces that fit together. One day my son would help my daughter with talking. The next my daughter would do a simple fine motor task for my son. They became closer, but the world moved further from their island.
Oh man, those first years were a bear. My husband and I were at odds. We even separated for two months under the stress. Never did we know that things were supposed to be some other way. We blamed ourselves, our extended family, his job, each other....just everything in general. Life was hard. And home life was close to nuclear. It's never easy starting a family when you had been two career people that worked out how it's all supposed to be on paper with a "plan." Oh-My-Gosh-Becky!!!! That PLAN! We were so naive.
And through it all, life rolled on. Doodles (I'm not going to use their names) screamed for nearly four years!!!! Boogs...well, there isn't quite one way to describe him...but his differences became further and further from what a non-neurologically-challenged (I HATE the word normal) boy should be. The main directive of our PLAN became less of a business mission statement. It's evolved into a more zen idea of enjoying the little things and taking it one day at a time. Listening, even when there's no words that describe it, has become habit. We live in an amazing world and our children are bringing new light into the obscure. We thought we knew it all and every day they teach us something new.
So, in the upcoming posts, know that I am like generations of parents before me, a completely human parent, prone to mistakes. I'm going to fail in some things. But I will always succeed in loving my children to a fault.
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