This is the horrendous side of autism. As we end day 18 in the behavioral health center, he is worse off than when he went in. The pics don’t even do it justice. He has bit himself so much that his arms are black and blue. He has a huge knot on his head from banging it. Docs are hearing about this and a 4th
change to meds will be made, but what next? This is killing me to see him suffer like this. Not looking for sympathy – just awareness. I know that things could be worse and my child could have a life threatening disease or something but it doesn’t make it hurt any less. I wish I knew what was going on in his head. What is he thinking and feeling? Are these drugs jacking him up even worse? Does he just want to come home? Is he mad at me for taking him there? Does he miss us? God, I just want him better. I want to go back to goofy stories of him screaming and sneaking feasts for himself at 3am and making messes. I want to hear him turn on my stereo on level 20 at 5am and cuddle up with all his blankets on the vent behind the couch every night at 8:00pm. I just want my boy back. I want autism to GIVE. HIM. BACK.
My kiddos turned 11 this week. I woke up early that day and prayed so hard for them to have a great day. “Please God help Alex and Katie have a good birthday. Help Alex to cope and not have melt downs and make it a special day for he and Katie. Please don’t let him hurt himself or her”
Unfortunately, that prayer was not answered and Alex had a horrible day.
Alex’s level of aggression has gotten completely out of control this year. He has been hurting others as well as himself for months now, but this last week was just over the top. His main way of dealing with anything is to bang his head. He did it so hard this week, he gave himself a rug burn and then the next day on his birthday, he did it again on the wall and sliced his head open. He has bitten himself or someone else every day this week – including my poor mom. He bit her so hard it went through her winter coat, through her skin all the way down to the muscle of her arm. He attacks me every single day and I’m so scared he will hurt his sister Katie.
He needs help and we, as a family, just can’t do it alone anymore. So yesterday, we chose to have him admitted into a behavior health hospital to try and stabalize him. Leaving him was the hardest thing I have ever had to do.
The hospital he is in specializes in Autism. When I spoke to them last night after I got home, they said he was settling in just fine and was doing great. He could be there from a week to a month….I can’t even imagine. I’m just so sad. Katie said she keeps hearing him. I know now that my bday prayer did not go unanswered: God answers our prayers in ways that are best for us. Because Alex had that horrible day (after so many before) we finally took this long overdue step. My new prayer is that the 24 hours a day of intense therapy and medication changes will get us back our sweet boy.
Some of my friends know that we’ve been struggling a ton lately with my son, Alex, who has autism. He’s regressed, been super aggressive, extremely hyper active and not sleeping. The not sleeping part is truely the worst part. It used to be that he would wake up around 3:45am almost every day and would run around the house and yell for an hour or two and then go back to sleep. This – while extremely annoying – was doable because even though we were up in the middle of the night, I could usually get him back down and I could get a few more hours of sleep. But lately, he’s NOT been going back to sleep. And he’s waking up at different hours. 2:30am was the very worst. It’s making me lose my mind.
With the lack of sleep I’ve had lately, I’ve been making stupid mistakes and not feeling myself at all. Someone once told me that suffering from lack of sleep was just like being drunk, but I’m not feeling it… Here’s the difference that I’ve noted so far:
1. Taco Bell at 3am doesn’t seem like the best option EVER
2. I have not been tempted to text ex boyfriends late at night
3. I don’t think I can dance
4. Ugly people do not look attractive to me… yet
So there you go – being over tired is nothing like being drunk – being drunk is much more fun 🙂
I went to Willow Creek last night for their annual special needs weekend where they embrace families like mine and raise awareness of disabilities. They told people the following things: It’s OK to be uncomfortable with someone’s disability, but don’t stare and don’t judge. And don’t ignore it. Ask the parents how you can help. Listen. Acknowledge and smile.
It’s really that simple! They did an unbelievable job of showing several families coping with special needs and had a lead pastor tell his story of his son’s diagnosis of down’s syndrome. I identified with all of it, but the fact that they were trying to educate the masses on how to help meant more to me than them “getting” what my family is going through. That’s 2000 families or so that might see a kiddo acting out and not give a dirty look, or see a child in a wheel chair and not look at them like they are a freak, or see a mom struggling and ask how they can help.
Awareness like this means everything!
If you know someone that has a child with special needs, it’s OK to ask questions. We want to talk about it. It’s OK to ask how you can help. We probably won’t accept it, but you just made it easier for us to sleep at night because you showed that you care – that you have compassion. And when you see these families out in the public, acknowledge the struggles they go through every minute of the day and give them a smile to acknowledge your respect for them. We need that encouragement and value it more than you even know.
Just got home from a great little getaway to Wisconsin with the kids. My good friend brought us up to his family’s cabin. We had such a good time. My boy made it known we were in town, with every yell or outburst echoing off of the beautiful lake 🙂
It was interesting going to dinner at the local supper club where the crowd was older and had apparently, never seen a special needs child. It was like going back in time with the looks. While no one said anything to us, it was clear that we were being stared at and whispered about. I don’t know if I’ve just developed such a thick skin and don’t notice when this is happening anymore or if people are really more aware these days. I can remember years ago, sitting in the car at the grocery store crying my eyes out because of the way we were treated. Ever since, I’ve worked really hard to ignore it and let people know that Alex has autism and tell them a little more about it so they understand rather than judge.
We got through dinner, and I did my best to ignore the stares and pretend I didn’t hear the whispers, but it still hurts. Hurts for my son and his sister and my dear friend who was nice enough to bring us on this nice vacation. I certainly didn’t want them to feel those looks that scream, “Why can’t you control your child?”
Today, on our way home, we stopped at Culver’s and had the exact opposite reaction. I brought Alex into the women’s bathroom where he proceeded to dance back and forth and hum and slap my arms. A woman waiting in front of us told us to go ahead of her and gave us a big smile. I smiled back, gratefully, and took her up on it. We came out and washed up and I told Alex to wave bye bye. He gave her a big smile and a high five and everyone in the bathroom laughed. She said what a good job he did and what great eye contact he had. She was obviously a special needs teacher and gave us that small gesture that told us she gets it. It meant the world. We came out and told our little group how much we appreciated it and she told hers and we all kind of laughed and had a really nice, relaxing lunch. Such a difference a little awareness and tolerance makes!
Either way – whether I was just being extra sensitive at dinner that night or people really were judging us, I am proud and very thankful to my friend Rick who never even skipped a beat and went on with dinner through Alex’s noises and eventual meltdown. Talk about tolerance!
So appreciative to have good friends like this in my life and total strangers like that woman at Culver’s willing to lend a helping hand when it’s needed!
Today was an awesome day. Back in December, Alex started going to Special Olympics Snowshoe practice. He went once a week for only a few weeks and practiced a bit at school. The first time he went, he was absolutely miserable! He cried and yelled and fell down. I didn’t think we’d send him back. But this awesome teacher and aide at school said to give it another shot and promised they would practice with him. Well, about a month later, here we are at our very first Special Olympics Race. Click on the link below to see video!
The day started early and went pretty quick. We arrived to a gym-full of athletes, family members, aides and coaches. Teams sat together and got their name/number bib to wear over their District 54 Special Olympics jackets. They were bundled up and ready to go. As I looked around and listened, I saw and heard many kids like Alex. They were jumping and flapping their hands, rocking back and forth, echoing movies, laying on the ground or glued to their iPads. There were also quite a few kids that had Downs Syndrome or some sort of mental retardation. (Hate to generalize like that, but I don’t know quite how else to say it)
I quickly met a nice boy named Mike. He introduced himself, asked my name and wanted to sit with me on the bleachers and asked if my hair was soft. It was adorable. If only the boys that I meet in everyday would treat me like that 🙂
Soon, it was time for Alex to race! They called his name and he sat in a bullpen type of waiting area in the gym. We got him bundled up and ready to go and we headed out to the field at Lamb’s Farm. A very nice (and patient) aide got Alex into his snowshoes. Did you know snowshoes aren’t shaped like tennis raquets? I didn’t 🙂 He spent a long time getting them on him so they fit just right and wouldn’t come off. And then he lined up. I was told to wait for him at the end of the 100 meter lane. The lanes were designated by orange cones and markers and the atheletes had to stay in their own lane or get disqualified. I also came to find out – which I didn’t know – that the athletes could not get any outside help from the coaches or family members. They had to complete the race ALL BY THEMSELVES. WOW!! I’m even MORE impressed with these kiddos now. I assumed they would be helped along the whole way by an aide and everyone would win something no matter what. This is not the case. The actually have some pretty stict rules like no jeans, can’t go out of the lane, can’t get any “coaching” during the race etc…
As I went to the finish line, I was already tearing up – leaving my kiddo at the starting line all by himself was a VERY prideful and scary moment. What if he didn’t move? What if he tripped an fell? What if he had a total meltdown? What if he WON!!!?
A kiddo that we knew from a before/after school program was just finishing up the race before Alex when I got down to the finish line. He was moving slow and steady, and a whole group of people, including me, were cheering him on. He stopped right at the end and decided he kinda liked the cheering. He looked around and everyone was yelling GO MAX – KEEP GOING and he just beamed. It was maybe the cutest thing I’ve ever seen. The tears began again. Soon, another athlete was walking next to him and encouraging him to finish. He finally had to move off the course to finish the race. Everyone cheering and Max looked so proud. It was really a great moment for him.
Next was Alex’s race. The starting gun went off and the 3 kids started to move. 2 of them – who were much bigger and older by the way – started RUNNING!! Alex began moving forward slow and steady. The 2 other racers finished their 100 meters in about 45 seconds or so. We all cheered them on and congraulated them as they ran. What an accomplishment for these kids!!! Alex soon appeared slow and steady as ever and was making his way towards the finish line. His grandma, Katie and I were going crazy. He had a bit of a smile as he saw us and heard the cheers from the group. With a look of pride and determination, he made his way towards me. As he came up I held open my arms and he hugged me tight. It was such a great feeling!!! For us both!!! Then, I heard everyone yelling that he had not crossed the finish line and needed to take 2 more steps, so I backed off and he finished and we hugged again. His sister was videotaping the whole time and got the best shot of him after the race. He looked SO PROUD of himself. I can’t stop smiling just thinking about it 🙂 Grandma was quick to reward Alex for his hard work with a cough drop – we didn’t even think to bring his REAL motivator – Skittles!
We went inside and waited awhile and they finally called his team up to get their awards. Out of the 3 athletes, I am proud to say he got 3RD!!! He even got a bronze medal because he finished the race. Many kids that didn’t finish only got ribbons, so I was excited that he not only raced all by himself, but finished as well. I could not be more proud!
There was another race in the afternoon that was only 50 meters and Alex had the same result. Wait time for that medal was much longer and we had a few melt downs. But all in all, the entire day was just incredible. I was so happy that my mom and Katie could be there for his first race and cheer him on. I was also incredibly proud of his sister, Katie who was patient and helpful and engaged and supportive the entire day. This is almost as big of a feat as her brother competing in the race. It was a great day for both of my kids!
It’s been awhile since my last blog. We had a great summer! I got a really great new job and we did even more than we normally do over the summer like go on vacation, hang at the pool, went back to school and are now gearing up for Halloween. I’ve been trying to attend more educational seminars because I realize that I live my life in happy denial. “If I don’t think about the future, everything will work out just fine, right?” This has worked for me so far, but I’m afraid as my kids get older, and I invetibly get older (how annoying, right?) I have to start preparing for the future. For my kiddo with autism and hopefully so my daughter doesn’t get stuck with the burden of care for the rest of her life.
The first seminar I went to was about how to apply for state funding for kids with special needs after they turn 18. I will qualify that the things I’m going to write may seem a little extreme, but this is the jist of what I got from this blur of an overwhelming meeting: I found out we need to register on a list that quantifies how many people in our state have children with special needs/autism. In order to get funding from the state, you have to enter a lottery. Literally a lottery. If our name is called and we qualify, we will get state funding. The lottery is only run once a year with the hope to maybe pushing it up to twice a year. Does this sound like Hunger Games to anyone? How on earth can aide for those that deserately need it be decided by a lottery? I also found out that to help our case for qualification of benefits, I would need to state that I can’t keep my child safe. This would prove to the state that funding for state programs like housing, etc is a neccessity. Basically, I have to say that I’m a crap mom in order to get my son the aide he rightfully deserves. Awesome
The next seminar I attended was with a lawyer that was giving advice on starting a special needs trust. First off, he had pom poms and other props. While I totally appreciate his attempt to make lawyerin’ fun for all as well as dumb it down for us, do I really want legal advice from a clown? I did get a few nuggest from his speech – namely that the state is out to screw our disabled children and we have to do everything in our power to protect them. My time in denial bliss is now over 😦
2 things that both of these meetings had in common were the amount of parents that were there with pen and notebooks in hand, most with their spouse and some even brought their children. All of us were eager to learn and to find the right answers for each of our children’s special circumstances. All of these people gave up time from their already chaotic lives to go and try to DO MORE. That’s all we can do, right?
While my new job is awesome, my insurance is not. We just found out this week that they don’t cover Autism. Like it doesn’t exist. Like – “Oh, we’ll just ignore something that affects 1 in 88 people in America. No biggie!” SERIOUSLY??
Looks like it’s time to DO MORE. I’ve been going back and forth with insurance looking up diagnosis codes that we might be able to use, talking with my doctor and Alex’s therapist, working with the HR team of my parent company and mine, dealing with a benefits mediator and filing an appeal. Meanwhile, trying to figure out how to pay for the therapies that were already completed and supposedly covered. I decided today that my mission this year is to work to get this company to change their minds. THEY NEED TO DO MORE!! I definitely have my work cut out for me, but never tell an Autism mom they can’t – I guarantee they will do more until they can!
It’s been a crazy month full of extreme highs and lows. I haven’t written much lately because both extremes were extremely overwhelming!
We started the month off with the Autism Walk efforts – marketing committee work, volunteering, rallying my amazing team and finally participating in the walk itself. I have to say that this was the best year yet. Every year that I walk is emotional – for different reasons. This year was no different. I had the amazing support of my co-workers to walk with me. Not only did I have onsite support, I had friends and loved ones make such generous donations this year. I didn’t even have that much time to really fund raise like I would have liked, but my true friends came through for me and gave with their hearts. No words, thank yous, tears or hugs can actually show these friends how much that means to me. In fact, today I was reading about a new drug that might help people affected by autism. Because of fund raising efforts like this, companies can research and test out medication that might actually help and hopefully eventually CURE our kids!!! That’s HUGE!!! I just hope these people have some idea of the true impact of their generosity and the thankfulness that I feel.Oh, and by the way, not only was it a great turnout, we were also the only team I think in history to actually tailgate at a charity walk. Thanks to my director and some cool co-workers, we had mimosas and wine to cheer us on the less than 3 mile walk – that we incidentally never even finished 🙂 FUNN!!
After that, my family experienced some tough times. Alex did some pretty big damage to his ceiling by knocking down the can light and ceiling tile by flipping his mattress. Luckily, a good friend of mine was able to come over the same day and fix it. Then, Alex decided to make “snow” by wetting down an entire roll of toilet paper and then sprinkling pieces of it all over my house. That took about an hour and a half to clean up.
And then, the worst happened. Alex got out of the house twice. OUT OF THE HOUSE. Do you know what that means? He literally left the house and was out and about. Not in an enclosed area, not in a fenced in yard, not with an adult – BY HIMSELF. He doesn’t talk. He doesn’t communicate. He doesn’t know to look left and right to check for cars. He doesn’t know he should have clothes on when outside. He doesn’t know that 4am is not an appropriate time to drink 5 capri suns and leave them all over the driveway. He doesn’t know that Mommy would almost DIE when she sees the evidence that he escaped. He doesn’t know that I could lose him forever when he does this.
Talk about emotional low. The first time he escaped, it was truly my own fault. Katie came back from her dads and walked thru the garage door while the rest of the family came thru the front door. I didn’t even think to check the garage door because I didn’t even realize it. We went to bed and didn’t think twice. Alex has been getting up around 4 and making messes in the house but had never really attempted to go out, so I didn’t even lock the garage door.
I awoke suddenly around 6am with that weird feeling. I knew something was up. I yelled for Alex immediately. NO ANSWER. I went downstairs and I see him sitting at the kitchen table with the following FEAST in front of him: Gallon of ice cream, 2 packs of raisins, a box of Chex mix, grapes, frozen berries, cheese and a Capri sun. There was a mess all over the table and floor. The fridge was still locked though, so I was confused where the frozen stuff came from – and then I realized… HE WENT OUTSIDE. I ran outside, and to my horror, saw the open fridge/freezer with everything displaced and on the floor and a trail of Capri suns leading all the way to the street. The garage door had been accidentally left open by Katie the night before (and I didn’t even think to check on it!!)
I almost threw up. I come back in to see my (by the way NAKED) son, sitting at the kitchen table with his feast that he had prepared himself, happy as a clam. NO CLUE what could have happened to him. I cried as I cleaned up as the shear terror of what could have gone wrong and the guilt I felt for not keeping him safer.
After that, I was a psycho about checking the locks. I triple checked. I got up in the middle of the night. I checked in the morning. After I checked, I checked again. I tossed and turned, worried about it.
That’s why 2 days later, it was such a surprise when I saw the dirt.
The weekend prior, when my kids were at their dads, I had taken a few hours to do some planting in my courtyard in the front yard. I took great pride in planting new bushes and flowers, creating a pretty walkway with bricks and lights – it was beautiful to me – who was born with no gardening abilities whatsoever.
But that day, I knew it was no more. As I came down the stairs, I saw dirt all over the hallway. All over the kitchen. Mud in the sink. Hand prints on the door and all over the bathroom. There were hot pink petals near the doorway. What the hell happened???? Where did this come from, I thought. I know I locked the doors like crazy – there’s no way he could have gotten out!
But he did. He must have unlocked the door and the deadbolt to get out. He went into the courtyard and pulled out my petunias, dug up the plants and sprinkled dirt all over the entire courtyard. He then must have decided to clean it up, because I found the bathroom rug wet and rolled up with dirt all over it in the kitchen garbage.
Again – the tears flowed. This time – for longer, with even more desperation. What was I supposed to do? I triple locked. He still got out! What on earth am I going to do with this child? How will I ever sleep? How will I ever relax? How will I protect one of the loves of my life from himself!??
It was a tough day indeed. I told some friends and got some advice. I looked into an alarm system – but in the scheme of things – by the time an alarm sounds, he could already be in the street – he’s so damn fast!!
I ended up talking to my best friend and she and her fiance were over within hours to install new locks at the top of my doors that catch when you try to open. They also helped me to install magnet locks on the cabinets in the kitchen so he can’t get into those. (oh, forgot to mention, he also poured dishwasher soap and Comet all over the kitchen within 10 minutes of waking up one day). IT WAS NOT A GOOD WEEK.
So all in all, like I said – May was a busy month – full of extremes. All I can say is Thank GOD for such good friends and family members. From my friends and family members donating and walking with me (thanks work friends and family) to them listening to my worst fears coming true and being there for me as I cried out of guilt and concern (thanks Diane, Monica, Kristine and Nancy) to them coming over to help me clean up (thanks Mom) or to fix the ceiling (thanks Rich) or attach the lock issue (thanks Amy and Kevin)- I don’t know where I would be without them.
I wasn’t going to write this month because I didn’t think I had anything positive to say – but looking back, that’s all I have. I’m so thankful 🙂
As we are approaching the 2012 Walk Now for Autism Speaks, I find myself thinking about how much this walk means to me and has meant over the last 7 years. Alex was diagnosed in February of 2005 at just 2 years old. I knew in my heart he had Autism. I knew that when he walked on his toes and flapped his hands and lined up his toys on top of the safety gate and stuffed his mouth with food and smeared his poop all over the place and screamed at the top of his lungs in the middle of the night and laughed while he ate for no reason and never said a word and never looked at me and dumped things out constantly….I knew.
Going through an Autism diagnosis in 2005 was much different than it is today. Don’t get me wrong, I think it hurts just as much, but I don’t think it’s as scary as it maybe was back then. I didn’t have Autism Speaks in 2005. We had support groups and a few websites, but nothing like today. There were no checklists or resource libraries or The First 100 Day Toolkits after a diagnosis like there are now. There were no Facebook pages, no blogs, no sibling support groups…. or at least none that I knew of, and definitely not available all in one place. And it was the scariest thing in the world. No, it wasn’t a death sentence for my child, and my heart breaks for parents that have to endure such things. But for my child, the thought of him never having friends, or showing love or getting married or living on his own and taking care of himself, or experiencing true emotions, it FELT like a death sentence at the time.
So I did what anyone would do – I grieved. I grieved for the loss of a normal childhood for my son. I was sad and felt guilt for what I may have done to cause this. I was disappointed and scared for the future. I felt like giving up. How would I help my baby? How could I ever handle this? Where would I find the strength to do everything I could for BOTH of my kids to get us through this?
After a few days of feeling this way, I realized I needed to DO SOMETHING. I wasn’t sure what it was, but I knew I had to do something or I would be useless to my family. I went to a support group. This was definitely NOT FOR ME. It was all too new, too REAL. I couldn’t deal with all the emotion and definitely did NOT want the pity. But, from this support group, I learned about an organization that was created to raise awareness and raise funds for research to figure out what the hell causes this. They were Cure Autism Now back then (now known as Autism Speaks) and they were having a charity walk in just a few short months. This seemed so RIGHT to me. This seemed like something I could DO! I joined and started asking friends and family for support. And the support was OVERWHELMING!! My friends all came out. They asked questions about Autism. They asked my family how we were feeling. They gave donations. They showed up to the walk! I literally could not stop crying that day. It was the most love I think I’ve ever felt in my life.
So, I’ve participated every year since. Every year it goes a little differently. That first year, we came out with a whole team. But the next couple years, I went and volunteered instead because I felt I could do more that way. A couple years after that, my dear niece and her friend came out and walked with me while my kids were there with their dad. The next year, friends helped me to throw a fundraiser for Autism Awareness month and came to the walk and even threw a barbeque afterwards for us. Each year, it gets better. Each year, I am overwhelmed at the support I receive – both through donations and on site. Each year, I cry for how many more people are there than the year before. So many of these families are there for the first time and feeling the things I felt that first year. But because of Autism Speaks, they know they have a family. They know they have support tools and resources and people that just “get it” all in one place. I have referred them to friends going through those scary times of wondering if their kiddo was on the spectrum or for those struggling with behaviors that seem just not quite right. Even if it turns out to not be Autism, it gives them the resources to get a diagnosis, therapy, support and help they need – whatever it is.
This year is no different. Not only is my company matching the donations we raise as associates, our department is walking in support of the cause as a team building activity. We’ve raised enough money to get a team village at the walk and several of my co-workers are bringing their families to walk on Saturday. I am completely humbled and excited and thankful for this level of caring and support. I’m excited for them to meet my family and see the amazing families in my Autism Speaks community. I am so thankful for this walk and for the support that my family receives through it. It’s really given me something to work for, to hope for and to be a part of.
Pictures to come in my next blog of what’s sure to be another AWESOME WALK!!