We’re finally settling back in after a great week in New York. As I sit back and read reviews, commentary and general press about the Rock Hall event, I just kind of giggle to myself about the wonder of it all. In the internet age, there are certainly a lot of opinions about every little thing. When you’re on the inside looking out, you realize just how misinformed almost all of the internet chatter really is. So and so is really an ungrateful asshole, no the other guy is, no the rock hall organization is, no the entire music industry is. What’s he got to complain about? He’s worth $20 million. The truth is, there’s a little bit of truth and a whole lot of mistruth and misunderstanding in all of it. In other words, don’t dare believe what you read on the internet and anything you say WILL come back to bite you. Tom would say, “You can’t win, no matter what you say. So why say anything?”
Judging from internet commentary, the general public seems incredibly negative. Our daughter was looking around at some chatter about the band last week online, and said “Wow, Cheap Trick fans sure are negative.” If you just read the message boards, that is what you would think. That’s why the band won’t even go there. Would you? It’s pretty sickening. Of course we know Cheap Trick also has a very loyal fan base who has stuck with them for a very long time, but people are very willing to tear people apart from the anonymity of their computer screens.
But honestly, when you sit back and think about all of it - Steve Miller’s rant in the press room, the Black Keys rebuttal, the jabs between the CT and their former bandmate, Gene Simmons’ rant about rap, NWA’s eloquent acceptance, but then bolting immediately after they received their award - there’s nothing to do but laugh. In most cases, I can see some valid points on both sides. It is good entertainment, as it should be. You experience what you make of it. Whether you want to take the opportunity to thank people who helped you along the way or use the platform to call out wrongs, it’s all ok. Everyone has a right to use the platform how they wish.
It’s rock n’ roll, and things should be shaken up and at least a little controversial. “It is all very Spinal Tap.” is what Tom said, and he’s right. That movie was so funny because it was so ridiculously real. As for me, I got lost in the hallways backstage looking for the exit. There were people everywhere but no one to tell me which direction to go. I was instructed to leave the building during the finale and be waiting on our ride out back. Of course I did, and we still had to wait nearly an hour to leave. In the end, all I could do was laugh at myself and everyone else there. Good times and great memories!
I’m so thankful that we’re back to school today. Long breaks are really tough for our family. Most families look forward to vacations, sleeping in and time off. Not so in this household. A break from routine brings chaos. Liam just does not do well with a lack of structure. It’s been a tough adjustment. We’ve never been a structure oriented family. But we are learning to be and trying to prepare for the forthcoming summertime.
The end of the school year is coming, and while I look forward to warm weather and playing outside, I dread it. It’s always a really hard time for me. Tom is not home and the kids are out of school. Life is much, much harder without the routine.
Last night was rough. Liam was having a hard time falling asleep, and he kept getting out of bed and coming downstairs. I tried everything imaginable. I must have put him back to bed 20 times. Lilah even tried to step in and help. Nothing worked until I was eventually too worn out to fight it anymore. Just like discipline, none of the traditional techniques really work with our children on the spectrum. There is no amount of logic, empathy, punishments, threats to take away privileges, all out begging, that work. Liam lives in the moment, controlled by his impulses. He’s not capable of anticipating consequences for his actions. Finally, I begged, “Please, just let me get some sleep. I’m going to wind up sick and in the hospital, and then I really won’t be here for you.” I was dingy, and that was a big mistake. The next hour Liam was crying, frightened and worried. He asked who would take care of him, and what would happen to mommy. I felt horrible. Did my desperate attempt to beg for his cooperation make him stop and just stay in bed? No, it did not. I tried my best to keep it up. “You can’t let him get away with it,” people will judge. I realize that, but at some point you do get worn down. I have found a lot of stamina and energy I didn’t realize I had in these 9 years with Liam, but there still comes a point when you just can’t fight it anymore.
Liam still winds up in our bed eventually every night. That’s because at some point, after 10-20 times of walking him back upstairs, I just cannot do it anymore. There are some parts of me that doesn’t mind having my sweet boy beside me. The problem is he’s a restless sleeper, and he’s developed a habit that’s some variation of restless leg symptom. It’s a condition I’m familiar with. It runs in my family, and I experienced it when I was pregnant. Liam has developed a habit of wedging his hands and feet under my back. He’s seeking deep pressure to soothe him to sleep. It’s a sensory seeking behavior that lots of kids with autism have. I have talked with him about it. “Why do you do this? Can you please stop? It keeps me from sleeping, and I need some sleep.” He just says, “I can’t sleep,” or “I can’t help it.”
I’ve not had a solid night’s sleep since having kids. If I had the chance now, I think I’d still wake up worried. On the rare occasion there is a night Liam does not wake up, I wake up wondering if he’s ok. I know this is the way of life for those on the spectrum. Liam seems to arouse consistently every couple of hours through the night. I wonder if he ever gets any real deep sleep. No wonder he gets so tired every day. He needs rest in the afternoons. It’s a lot for him to get through a full day of school.
I’m actually conditioned and surprisingly ok with not sleeping very much. Some friends and family wonder how I can tolerate it. But you do get used to it. And then there are times when you just feel all out tired. Tired of everything, the battles, the worry, your mind with 1,000 things racing through it. I had a dream the other night that I was going mad, like I was losing my mental capacity. It was just the stress of a tough week, and things will get better now that school is back in session. We’ll get used to Tom being away, and we’ll eventually adjust, as we always do.
Writing about it helps me process it an overwhelming fury of emotions. People will thank me for sharing something so personal and offer words of support. I do appreciate it. I also hope people realize I’m not really looking for sympathy. I’m just venting, and I’m also hoping there are other moms and dads out there who relate and who feel they are also not alone. It has helped me through the years to read the blogs of other autism moms and dads.
I have a few hours now before the after school pickup routine starts. I have lots to do - managing the household, preparing for our trip to New York, a dozen or so phone calls I need to make, going back to battle with my health insurance company. I’ll only get about half of it done. That’s ok. I’m doing the best I can. I do always try and keep a positive attitude. I am proud of myself for that.
Any other parents out there raising a child on the spectrum and also living with their own chronic illness? It presents an extra tough challenge. What do you do when you're sick? There's no time off from parenting when you are sick. When your child has autism, it's kind of scary. You have to be watching closely all the time. There's one unpredictable danger after the next. You can hardly get a chance for a shower, much less lay down and not feel good.
As many of you know I am a type 1 diabetic. I'm fine most of the time. I've had an insulin pump for almost 20 years. That's me holding it in the picture. The insulin pump is my lifeline. It's with me 24/7, providing me a constant stream of insulin that I need to live, because my pancreas no longer produces it. Last weekend I had an episode of DKA (diabetic ketoacidosis). I had a bad site, meaning my infusion set, a little plastic cannula that is inserted into my skin with a needle, hit scar tissue in my abdomen and the insulin wasn't absorbing into my bloodstream. Within a few hours, my blood sugar shot up to 400 and I was down - could hardly move and was vomiting. The only way I was able to recognize what was happening was when I started to feel very bad. I was very lucky my mom was here visiting and was watching Liam for me and ready to call 911. Type 1 diabetes is manageable, but crisis can hit rapidly and without warning, and it can be deadly.
Not to worry. I'm fine now. It took me about 10 hours to turn it around and get my blood sugar back to normal. But I'm always a little unnerved after an episode like that. I'm so caught up in Liam's care, it's easy to forget about myself.
Lilah was away a couple of times this summer and I was pretty nervous. I just hate to think what would happen if I had a diabetic crisis and was home alone with Liam. Hopefully he would call a family member, but I don't really know. He's not developmentally far along enough yet to understand what is happening. I rely a lot on Lilah. Thank goodness she's healthy, and very good at looking out for Liam, and me too.
I’m looking for the word to describe how I feel on these kind of nights. Bewildered? Weary? Exhausted? Mixed with a weird sort of peace though, because I know I can handle this. I need a word for every extreme emotion at once. None of them quite fit. Maybe I should make up my own word. Barabajagal? That’s not my word, it’s Donovan’s I think. It’ll work.
We’re a week into summer break from school. Lilah just graduated from elementary school and is moving onto middle school. Yikes! We’re getting ready to travel for 3 weeks. Tom left today for a Cheap Trick show - the beginning of touring season. For us, it’s kind of always touring season.
I have a lot on my mind. I’m ambivalent about summertime. I love the warm weather and the beauty of nature, the fun and playful feeling, and just the time off from the grind. But it’s sad to see Tom go. That’s the part that’s really hard about being married to a musician. Liam asked him when he’ll be back, and Tom said Christmastime. Sadly, it’s not much of an exaggeration.
I’m trying to wrap my head around packing for a 3 week trip. We spend two weeks on the west coast with Tom, then fly to the opposite coast to the beach in South Carolina with my family. This will be our second trip flying with our service dog Blue. There’s so much to do and think about - making arrangements for the house to be taken care of, our other dog Monte (who we wish we didn’t have to leave behind), the newly launched website. As long as we don’t forget meds and Blue’s service dog vest, we should be good.
Also, I have to mentally prepare for whatever curveball autism or the dog will throw at me on travel day. I’ll try and brilliantly pack carry ons, prepared for anything, while not packing too much to lug around while corralling two kids and a dog, any one of which may impulsively take off and escape me at any moment.
Like I said, so much on my mind already, and Dennis the Menace rears his head. Yes, that would be Liam. A week out of the school routine, and he’s turned into wild child. “Demon child” Lilah called him today. He didn’t want school to end, and neither did we. Then it’s all on me, 24/7. No structure and work to tire him out by the end of the day.
He wants to be outside all the time. He loves to play ball in the backyard. That’s great, but I can’t do anything else while he’s outside. I have to keep a close eye on him, or he’ll hit the ball over the fence and try to climb his way out. Now he’s getting big, and it’s getting very hard to find obstacles to keep him in. He’s persistent and fast.
Tom and I have been like a couple of old forgetful people the last couple of weeks. We keep having to find new hiding places for the deadbolt keys. We have to keep all doors to the outside locked. Otherwise, Liam is out the door before we even realize it. He knows all the hiding places, and has no trouble pulling up a chair and getting the keys. We’ve hidden the keys so well, we have hidden them from ourselves. Now we’re getting into it. “Where’d you put that key?” “We’ve locked ourselves in. Hopefully there’s not a fire.”
Today, right after Tom left, I played outside with Liam for a little while. Then it was time to go in to get ready for Lilah’s vocal lesson. But when Liam is doing something he likes, he doesn’t want to stop, so he doesn’t cooperate. He doesn’t listen. He doesn’t follow directions. He doesn’t care about consequences. He’s in the moment. He runs all over the yard for about 30 minutes before I finally corner him. He’s gotten very good at this game, and I’m growing tired and weary.
Finally I catch him, wrangle him inside, lock all the doors and hide all the keys. Liam is mad. He wants to play outside. He screams and yells in protest. I need a few minutes to pull myself together. I try and give him his iPad so he can chill out for a minute. But no, he’s mad, and it’s intense. Liam gets this very intense stance when he’s mad, almost like he’s having an anxiety attack. His muscles are all tight. He growls. A lot of times he throws something.
This time he hurled his iPad right at me. It flew past my head and hit my bedroom dresser, breaking the drawer pull. Amazingly, the iPad is not cracked. Now I am angry. I muster up all of the energy I have to put him in his place. I tell him his iPad is gone, for a long time. He gets even more mad. I pack up his Wii and put it away. Lilah tries to intervene and talk to him. We both know it’s not going to do any good, but she tries anyway. Poor girl, she wants to help. But he pulls her hair and fights with her too.
Not to worry. We are experienced at this. It’s a meltdown, and it’s a part of our lives. It’s an ugly part of autism. It’s something all of us autism families know quite well. There are generally only a couple of ways out of it. We can tackle him into a bear hug and try to force him to calm down, or we can back off and step away.
It’s moments like these that keep some families isolated at home. I’ve experienced them a enough times in public. It’s mortifying. All I can do is step back, give him some space, and quietly breathe. I feel bad for him, us, and everyone around us. But I have to just turn blinders on to the world around me. I can only focus on keeping him safe. And I know the feeling of true unconditional love. I can’t really be mad, and I’m not. He can’t control this. He really is in another world, overwhelmed by something we cannot fully understand.`
He calms down once we back away. We know what to do next - redirect. We come up with a distraction to make him forget about that last struggle. Maybe we try to make him laugh, or talk about something else we can look forward to today. We get ready, get into the car, and pretty soon he’s fast asleep. He always falls asleep after a meltdown like that. It’s sort of like the aftermath of a seizure, like it zapped all the energy out of him. I am wondering, did he have the meltdown because he was tired, or did the meltdown wear him out?
He remained hard to handle the rest of the day. He was stuck on asking for all the things I took away from him during his rage - his iPad, his Wii, sleeping with mom tonight. Taking away the things he loves the most - it’s the only consequence that even comes close to making him think about behaving. It only works sometimes.
When he’s out of his normal routine, the things he loves, the things that are familiar, become very important. It’s like he’s seeking a way to comfort himself with what he knows and loves. That familiar thing may be a favorite toy, activity, or a favorite food. It may seem to the outside world that we parents are giving into the demands of a spoiled child when we ask for accommodations. This is something very different. This is autism.
Whatever is going on in that tangled up web of neurotransmitters in his brain, I don’t know. I’m always trying to learn from it. I manage to stay pretty calm and accept it. It’s very hard. I’m trying my best to express what it’s like, for people who don’t know. I guess I’d like the world to have a little more empathy for us autism parents.
We autism parents know we deserve a pat on the back. This is parenting on steroids. We didn’t sign up for this. We didn’t have any clue life would take us on this wild ride, but here we are. They say special needs parents may suffer from memory loss. You think? My mind is usually on about 10 things at once. We may as well embrace it. It feels like a never ending marathon, raising the eternal toddler. Life will never be boring for us.
I think of that mom on the United flight. She was trying her best to keep a situation from “going there”. Some point the finger - “Why didn’t she bring hot food? Why didn’t she feed her before? She should have done this, she shouldn’t have said that.” Yeah, yeah, yeah - whatever. “Do you think she didn’t think of that?” We can only control so much. We’re not perfect either. We’re doing the best we can. Also, we’re tired, frustrated, bewildered, barabajagal!
This week there is a family in the news who were kicked off a United Airlines flight because of a request they made for their autistic teenage daughter. The family is suing the airline, hoping to cause change in the industry that will prevent something similar happening to other families again.
The 15 year old young lady was hungry during the family’s travel home to the west coast from a trip to Disney World. The mother asked a flight attendant for something hot for her daughter to eat because she is sensitive about foods. Next thing they knew, the plane made an emergency landing and the family was removed from the plane.
This is another example of why awareness is so important.
I have a lot of experience traveling with an autistic child, so I want to take the opportunity to share some of the things that have happened to us.
Last summer, I was on a flight with our 2 kids. We always try to get bulkhead seats, so I won’t have the stress of trying to keep Liam from kicking the seat in front of him or messing with the tray. Of course the trade off is you don’t have access to your bags because they all have to go in overhead bins during takeoff and landing.
As much as possible, I try to follow the rules. I wait for the seatbelt sign to go off before getting up. But a lot of the time, the pilot never turns the light off for no apparent reason. Maybe they forget, or maybe there is turbulence possible that we’re not aware of. After a long wait, Liam was asking for food and growing more and more anxious, and I finally got up to get him a snack from my bag. I quickly grabbed a package of pop tarts and sat back down. We had a small cup of water with a lid and a straw from the airline drink service. By the time Liam was able to get a start on his pop tart, the flight was beginning its descent, and the flight attendants started asking for our service items, including the one cup of water we had. I explained that we needed to keep the water because my son was eating a very dry pop tart, and he has a tendency to choke. The flight attendant was not happy with my refusal, and was obviously agitated by me. She explained it was FCC rules. I said I understand and I’m sorry, but I have to keep the water for my kid’s safety.
The truth is, Liam has had a lifelong issue with laryngomalacia, or floppy esophagus, and feeding issues, and I really am frightened by his tendency to choke. I don’t want to be a problem passenger who won’t follow the rules, but my child’s safety is way more important. I couldn’t see what good it was going to do to go into a big explanation about his autism. So fine, let them just consider me a problem passenger for today. I don’t really care right now.
It wasn’t a good option for me to take away his pop tart or his water after he had calmly asked me for it for the past 45 minutes. This is the thing autism parents know. In stressful situations, like travel, we need to work hard to avoid things that will trigger a meltdown. They are very hard to stop once they start, especially in a stressful, public and confined space.
A few minutes later, another flight attendant stopped by trying to take my plastic cup. I had to half explain again. What I really wanted to say was what that mom on the United flight said, “maybe if my kid starts crying and screaming and scratching, then you’ll want to help.”
We autism parents may be on the edge of our own meltdown at any given moment. We are under constant stress from every direction, just trying to put out fires over here and avoid another one over there. But we have to keep it together and put on a brave face at all times. We’re ready for any battle that comes our way, from rude looks to unhelpful people. We do it every day. That’s why we’re called warrior moms. Nothing is more important than protecting our kids. We are tough, and it will take a lot to bring us down. But don’t think you won’t get called out for it publicly.
I sometimes think when we’re traveling, we must look like a disheveled and whacked out group of people. Liam is often extra impulsive at the airport. Now we have our service dog Blue in tow too. At least that helps people realize we have some REAL issues and challenges going on. Who knows, maybe someone will even offer their help on occasion. I am usually juggling a little more than I am equipped for. Thankfully Lilah is now old enough to give me a lot of support.
Unfortunately, I haven’t been offered help very often. If I am offered help, it is usually from someone who recognizes I am dealing with ASD. Believe it or not, it is comforting when that is recognized, and I am always very thankful for their help.
Outsiders may say we shouldn’t cater to our children’s demands. They may think we’re bad parents for allowing our children’s inflexible behavior. Maybe they even think we should just stay home if our child’s behavior isn’t perfect. They have no f!?&#X@ clue, so we don’t really care what they think!
Autism is a rollercoaster - it’s fast and intense. There are extreme ups and downs, twists and turns. There are competing emotions of love and fear, frustration and elation. There is certainly never a dull moment.
It’s springtime, and springtime always seems to be a tricky time of year. Kind of like the weather, it’s beautiful and invigorating one minute, and then the next minute stormy and frightening. I was thinking the other day that every gran mal seizure Liam has had over the years has occurred in the springtime. A seizure is also an intense juxtaposition of energy, fear, love and calm.
Liam has recently taken an interest in the weather. He talks about tornadoes. He loves to stare out the window during storms, and he is disappointed when they are gone. He's looking for some action I guess. Now he's got the weather channel app to keep on top of it.
This week, Liam has on several occasions reverted on the excellent progress he has made in the area of potty training. He’s 8 years old now. What do I mean, potty training? Yes, kids with autism are often still working on this well into adolescence. They are not easily embarrassed, so that is no motivation. Sometimes it’s hard to figure out what motivates his bad behavior. We know he knows better.
We were proud of the progress he’s made the last couple of months, actually remembering to go potty first thing in the morning when he wakes up, instead of just going in his diaper. At this age, the diapers often leak. Supposed waterproof mattress pads don’t really work either, so we’re having to replace an expensive mattress. This week, he emerged from school a couple of times in different clothes from what he went in. But yesterday, a big, big, bad, bad thing. When I got home from piano lessons with Lilah, Tom informed me that Liam walked up to our quite new sofa and peed on it. URRGGHHH! What is he, a freaking puppy? Thanks a lot little dude, that moment of impulsivity may have just cost us thousands of dollars. “Yeah, I know that means nothing to you, so how about I take away your Wii AND your iPad for a week?”
One of the biggest challenges for us with autism is the impulsivity. People sometimes like to play it down and tell me his behavior is just like any other mischievous young boy. But what we warrior moms know is, that simply is not true. It is NOT the same. The level of impulsivity and indifference to danger is extreme. Sadly, the frequency of adolescent young boys with autism going missing illustrates that it is different. It’s called elopement, and it’s probably the thing that scares me most about autism.
If you are paying attention, you will see that there are often searches going on for kids who have slipped out of their homes and wandered off, sometimes walking into the wilderness, and sometimes taking public transportation to who knows where? It usually doesn’t end well. I believe drowning is one of the top causes of death for autistics, because they are often drawn to the water, not fully appreciating the deadly consequences.
I have explained before that I nicknamed Liam Houdini from the time he was a toddler, for his fascination with doors and locks. As a toddler, Liam never met a baby gate he couldn’t find his way through. We had to install double cylinder locks all over our house and keep the keys out of reach. These days, Liam is once again too smart and capable for all my obstacles. He’s figured out all my hiding spots, and he just finds a way to climb and reach the keys, wherever they are. Now I often have to gather up all the keys and carry them around in my pocket, or at least sneak and hide them in a spot that he hasn’t yet discovered. Sometimes I inadvertently hide them from myself.
Right now I need to come up with a way to secure the keys and install new latches on the gates from our back yard that I can lock. Liam wants to be outside playing ball so badly almost all the time. It makes it hard for me to do anything else. He has to be watched all the time. I beg him not to hit his ball over the fence, but he is playing and doing his thing. He doesn’t care about my rules. And if it goes over and I’m not there, danger.
So when I need to go inside and get some work done, he has to go in too. What ever happened to the days when kids played outside all day while mom worked in the garden and cooked dinner? We can’t do that. I can try to steal the occasional bathroom break, but I can’t take my attention off knowing his whereabouts at all times. On the rare occasion that I do, he almost always gets into a situation.
Problem is, I have taken away all of his electronic babysitting devices. So now what? That punishment of taking away his favorite electronics is more punishment for me than him. He’ll have nothing to do but get in trouble.
Man, you really have to think on your feet to be a warrior mom. It IS downright exhausting sometimes. But I wouldn’t trade my adorably sweet, fascinating little boy with autism for anything. And last night, just as quickly as he made me incredibly angry, he returned to that sweet little boy, frolicked up to bed, masterfully did his homework sheet and turned out the light. “Two minutes?” “Yes, I’ll stay here for two minutes. I love you.” “I love you too mom,” he said. And all is forgiven.
I just left my kids home with dad for a few days. You would think I should be happy to get a break from autism mom role. But there is no part of me that likes it. I won't escape worrying about them while I'm away, even though I know they are in perfectly good hands with dad. But things can turn on a dime with Liam. He can seem fine one minute, scary sick the next, and back to normal an hour later.
Last night, I was awake throughout the night with Liam, who was writhing with stomach pain, worse than I have ever seen. It was a blockage so bad he was vomiting. I have no idea what started it, except probably a little too much milk. I was imagining there was no way I was going on this trip to LA because we would be spending the next day at the hospital. To be honest, I was pretty scared. Blockages like this can be very dangerous. But, alas, he improved by the morning. Yay, I get to go on my work trip.
Gastrointestinal troubles are a way of life in autism world. It's like a never-ending vicious cycle. Why don't you just not give your kid any processed food or sugar, you ask? Right, easy for you to say. Of course we will try most anything if we feel it might help. But in the real world, we live with these challenges whether we have a great diet or not. Our kids love what they love, and if they love fries or honey mustard or Ovaltine, are we really going to withhold just to see a slight improvement? In our world, it's called choosing your battles. Yes, we have tried gluten free and dairy/casein free diet. We did it for a year and a half. It didn't help. Yes, we do probiotics. I believe it helps. I hated taking Liam to little kids birthday parties and not letting him have birthday cake. When I finally let him go back to a regular diet, he said 'thank you mom" in such a sweet way. I knew I did the right thing for us. I chose not to make that part of our life that difficult anymore.
But Liam has hypotonia, or low muscle tone, and it effects him in so many ways, including his entire gastrointestinal function. There's not really anything you can do for it. We'll just try and make sure we are getting more vegetables and less milk. Poor little guy has so many challenges in life.
The good news is I'm on my way to LA, a place that I love to go. I'm working on some exciting stuff for Rock Your Speech. I look forward to sharing a lot more about it with everyone VERY soon. I have spent the last few weeks revamping the website, adding a lot more content, including music and some other cool things. It feels like it's taking such a long time, but it's all because so many great opportunities keep coming our way. It won't be long. April is autism awareness month, and we will have lots of things to share by then.
OK world, be good to me this week. I'm looking forward to sunny California after some major cabin fever from being iced in for over a week. Please, no emergencies with my kids while I'm far away.
It became a running joke with our family. We would be doing some random thing, and all of sudden we’d hear “Blue eyes, baby’s got, blue eyes.” We would look at each other and quietly laugh. It was so cute! Liam did eventually find other music he liked too. LMFAO was a favorite. “I’m sexy and I know it.” Not exactly appropriate, but there’s no stopping Liam when he finds something he loves, so we’ll go along. Cheap Trick, of course. Dream Police is a favorite. The Beatles. of course, all of the songs from Sgt. Pepper.
Liam loves to play music and dance. One time I told him his dancing reminded me of “Maniac” from Flashdance. He kind of runs in place. So we played that scene from the movie, and he wanted to see that over and over again too, and dance along. He could get away with the one word, “she’s a MANIC, MANIAC” over and over. It’s a beautiful thing, to see your child who has worked so hard to learn every little thing in life, doing something that is fun and puts a smile on his face.
We observed therapy sessions in our home with Liam several days a week. The therapist would get close to Liam’s face so he would watch her, and she would speak words very slowly, one sound at a time. Liam would usually just stare at her, and it took some work to get him to repeat with any kind of sound. He was pretty quiet most of the time, unless he was crying over wanting something and not knowing how to communicate what it was he wanted.
I would find myself playing charades with him, holding up objects in front of his to see what he wanted. Sometimes I hit on it, sometimes I didn’t. I worried so much about how frustrating it was. He didn’t know how to tell me if he was hungry or thirsty, or if he didn’t feel well, or he was just tired.
But I did find that I had picked up techniques from observing therapy. Sometimes it helped to just slow down and keep the words very simple and direct. I realized he could understand a lot more of what I said than I gave him credit for. He was taking it all in, and eventually he would use it. And I was sort of laying the groundwork for what would eventually become a journal for the song themes for “Rock Your Speech”, and for learning how to teach Liam.
• I have been fighting back tears all week since Liam’s latest IEP meeting. For those of you not familiar with the term, it stands for individualized education plan, and it’s for kids with disabilities or learning disabilities. It’s a meeting at school where the entire team of educational specialists, teachers, principal and parents discuss and formalize what supports will be in place over the next school year.
Liam loves school, and he is always excited to go and see everyone there. He loves to do his worksheets, reading, math, speech therapy, all of it. He always has an aide with him. He’s in a regular classroom most of the day, with pullouts for individualized help in some areas. But he really wants to be in the regular classroom doing what all the other kids do. He probably doesn’t even realize he’s got modified assignments. The aides assist him with his classwork and make sure he doesn’t disappear, the thing I am always most worried about.
I have never found IEP meetings to be stressful before. It’s always been pretty upbeat, with everyone gushing about how much they love Liam and how sweet he is. He has made wonderful progress each year since kindergarten. Considering he still only spoke maybe one or two words at a time back then, and today he speaks in full sentences and communicates quite well, I would say there has been pretty remarkable progress in the last 2 1/2 years. But it’s still hard to see your child’s data saying he is in the bottom 1% academically. We have been doing this for a while now, so we are somewhat used to that pit in your stomach feeling when you see stats like that. But the good news is he has mastered most of the goals that were set for him, and everyone is excited about his progress.
But this year there was an element to it that hit me hard. (Tom was working, so he wasn’t able to attend the meeting.) Liam is in 2nd grade going into 3rd, which means TCAP’s, or the state standardized testing, will start next year. We have to make a decision as a team what path Liam is going to take. I had assumed I didn’t want him to take the tests. I know he won’t be able to perform well, and why should we put him through something stressful just to see him fail? But what was explained to me at the meeting is that would mean he would begin an educational path that would mean he won’t be receiving a real high school diploma upon graduation. I was taken aback. I don’t know why I didn’t realize this. I usually research and am well prepared for things like this. I put so much energy into finding all the right therapies for Liam when he was younger, and was feeling good about how things were going in elementary school. But hearing that I have to make a decision now that will effect his long term future took me by surprise, and it was a hurtful thing to think about.
I have always known there was a good chance Liam would need assistance throughout his life, and chances were good he may not be able to live independently or have a high paying job. But we certainly don’t want to underestimate him. Sometimes children with autism make amazing progress and grow up to lead very productive lives. Of course we want to have the highest of expectations and challenge him to do as well as he possibly can.
But as I imagined him not receiving a real diploma I instantly imagined all the challenges that would present in his life. So I went to Google university to see what I could decipher about what this would mean. It’s bleak and depressing.
It means he won’t qualify to go to college, even 2 year community college. He won’t be able to vote? I’m not sure if this is true, but that’s what I read somewhere. He probably won’t be able to drive, especially since he has epilepsy. He can’t join the military. That’s fine by me. But I am devastated all over again. I just want him to have a chance, and we may have to make a decision right now when he’s only 7 years old that will follow him throughout his life.
Apparently no child left behind, which tried to keep standards high for kids with disabilities, isn’t so flexible toward the needs of kids with autism. Often they are very smart, but need direction and help with testing. They will be able to make certain accommodations for the test, like extra time and help with filling in the tiny bubbles, something Liam would not be able to do right now. But there’s nothing they can do if Liam doesn’t want to follow directions, or if he finds a certain answer funny and wants to mark that one because it makes him laugh. He has to have the stamina to get through hours of testing. Even with breaks, this will be very hard for him. He may be able to perform poorly on the test and still get promoted to the next grade level. Who knows, I guess it’s possible he could surprise us again by this time next year and progress beyond our expectations. But if that test were next week, I would know he couldn’t sit through it or really comprehend what was expected of him.
So does this mean if he doesn’t take the tests his fate is sealed? He is destined for unemployment? What kind of job can you get these days without a high school diploma? How in the world are we going to come up with enough money to make sure he’s taken care of for life? What will happen to Liam when we are gone? Is Lilah going to have to be his caretaker?
The thoughts racing through my head once again have me worried and afraid. The only solace is there are so many other families living the same reality. Surely things are going to have to change. Surely educational programs are going to evolve to work for kids with autism. Someone will figure out how they can become meaningfully employed, right?
I don’t know. It hasn’t happened yet. Right now, the political discourse in this country doesn’t seem to have much sympathy for those with disadvantages. It’s heartbreaking. Yes, I’m feeling sorry for myself and my family right now. Hopefully next week I’ll be back to warrior mom mode. The best I can do is turn that negative energy into something positive, and get to work. World help us make Rock Your Speech a success, both for Liam and for other families living with autism.