Guiding Hands
22 Oct 2010 1 Comment
I’ve been remiss in my blogging activity lately, and I really do apologize. This time of year has become so busy, so jam-packed, that free minutes here and there seem to escape me.
Someone William used to work with called him about a week ago. From the other room I overheard him suggest that she contact a program our boys are involved with, and he told her that they could really help. He then asked her if she’d like to speak with me because I’m “the one who handles all of that”. I got on the phone and, near tears, she told me that her four-year old daughter had just been diagnosed with autism. She was devastated and didn’t know what to do. She had heard William talk about Andreas’ diagnosis at work, and she felt an urge to talk to someone else who had been through the process. She wanted support, and who wouldn’t in her shoes?
Hearing those words all mingling together- ’autism’, ‘devastated’, ‘diagnosed’, etc- it brought back so many emotions and suddenly I was in her shoes. With the wisdom of someone who has experienced that gut-wrenching pain, I tried to calm her down, but what do you say to someone who has just heard such news? What do you do to help show them that, in fact, the world is not coming to an end? How do you explain that their beautiful child is still beautiful and amazing and intelligent (and so much more!)? How do you proceed from that diagnosis?
Andreas was diagnosed in May, 2008. The program that provides services for early-education aged children on the spectrum didn’t have any openings until September. Therefore, we were given a label, a diagnosis, an explanation, and then left to sit on it for four months. I felt frantic! I didn’t know anything about autism, I didn’t know anybody with a child afflicted with it, and I felt like I had nowhere to turn. Most people in our lives only knew autism in terms of ‘rainman’, or ‘life skills’. They didn’t know that there are differing degrees of skill levels (that’s why it’s a spectrum disorder). As a result, few even believed the diagnosis, which made me and William feel all the more lonely with such information. I found myself scouring the internet, looking for information that would prove the “experts” wrong. There are few feelings worse in the world than being told something is wrong with your child and not knowing where to turn for help.
I don’t know this woman very well, and I certainly am not familiar with her daughter. However, I know what steps William and I took, and I know what worked for us. I shared all of that information with her and I promised to be there on the other end of the phone line if she ever needed to vent, and I promised to meet her for coffee or to chat, and I promised that I’d go with her to doctor’s appointments and meetings with teachers. I wish there had been someone there to promise those ways of support to me when I was in her shoes, and looking back I can only imagine how helpful that would have been. I wish someone had sat with me, understood all I was going through, held my hand and told me that everything was going to be okay. The truth is that it is okay, but I didn’t know that then.
This woman and I both cried before the phone call was over. She said she felt so relieved that she had found someone who knew what she was going through. After I hung up I realized that a part of me had become that guiding hand, and I felt relief in that. I didn’t know anybody in the same boat when I entered this journey, but I had prevented one person from going that rocky trip alone.
That woman really has no idea how long, hard, and painful her journey will be. There will be days when she doesn’t want to get out of bed. There will be times when she wants to just break down and cry. There will be minutes where she doesn’t know how she’ll survive to see the next. What I know, though, is that there is hope and there is support and there is a deeper meaning to all of this. I know that one day her daughter will look her in the eyes and, verbally or non-verbally, share with her just how much she appreciates her mom being there for the good and the bad. I know that, one day, she will come to appreciate her child in ways other parents simply will never understand. I hope I can share that knowledge with her.
There should be a national hotline for parents of children on the spectrum. It should be a 24-hour hotline, and it should be staffed by parents of children on the spectrum. People who know how hard it truly is, and not because they learned in from a text-book. How does one go about starting such a project? Do any of you have any ideas? Maybe such a dream could be a possibility.
Soccer “Moo”ves
22 Sep 2010 Leave a Comment
I got a card from Kidsports in the mail about a month ago. It was advertising the “tot soccer” programs they offer. It said it was a fun, encouraging environment for the youngest kiddos to learn the very basic skills. I was really excited and promptly registered both boys.
Yesterday was the first “practice”. There aren’t teams, and there won’t be any games, so I expected a bunch of exuberant tikes kicking balls in all different directions. Boy was I mistaken. There were kids whose parents thought they were training for the World Cup. Geez, I was lucky to get Andreas and Liam into sweats, and some of these kids were wearing semi-pro uniforms. I took a deep breath and, with a slightly nervous smile, tucked Liam’s shirt in and sent him onto the field. The three year old age group had the first hour of instruction, with the four year olds following thereafter. As if I couldn’t feel any less prepared, I realized by the masses of electronics surrounding me that I had forgotten a camera. Things were off to a bad start.
Let me state that Andreas and Liam have never played organized sports before. I really shouldn’t have to state what I used to think was the obvious because who knew they even HAVE sports for kids under 3? I’m so far behind! My boys’ extent for training has been me giving them a ball and telling them to not throw it at each others’ heads. Anything else is icing on the cake. Can they kick one? Probably, so long as brother is the target. Can they dribble? Well, are they trying to sneak up on each other? I thought they’d be learning these kinds of skills in TOT SOCCER!! Who knew that TOT SOCCER is a ruse for parents encouraging their kids to show off their little league FIFA skills?
So Liam found a ball, which he immediately picked up, ran across the field with, and set 6 inches from the goal. He then leaned over and used his arm like a golf club and hit the ball into the goal. Other parents kind of laughed- “Isn’t that cute?”- and I praised Liam for getting it in the goal, and told him I was proud that he was trying hard. I suggested that next time he kick the ball instead. He then picked the ball up, ran back across the field to another goal, put it down 6 inches away, and kicked it. Somehow it ended up going the other direction. The little laughs were quieter this time as all the other parents began to understand Liam’s (and my) lack of preparation. The coach blew his whistle, which caused Liam to clap his hands over his ears, and as a result Liam couldn’t hear the coach tell the kids to line up behind him. Instead, and with a look of utter confusion, Liam picked up his ball and ran in the opposite direction toward another goal. He, again, put his ball down 6 inches from the net. This time, though, he thought it would be a great time to show off his elbow skills. He sat down next to the ball and tried, over and over, to hit it with his elbow. Again, the ball rolled (though much slower) in the other directions. Those little laughs turned into snickering, and I waited for the coach to retrieve my child. Instead, he just yelled from across the field. I got up and went and grabbed Liam’s hand, leading him to the other kids. I told him that I could tell he was working hard, that I was so proud of him, and I encouraged him to listen to the coach.
Long story short, 5 minutes later Liam was on the opposite side of the field than he was supposed to be- again. He fell to his hands and knees, and worried that he may be hurt, I ran over to him. The closer I got I could hear Liam making some kind of sound. When I got to him I realized that Liam had slipped into cow mode, was mooing, and was literally eating the grass. I quickly looked around to make sure nobody could see what he was doing. This could take a while. I crouched down and asked him why he wasn’t playing soccer with the other kids. In a deep voice, Liam said, “Moo!! Cow Wiam no wike tocca! Cow Wiam wubz gwass in my tummy! Moo!!” After pleading with him for 3 minutes to stop being a cow, and threatening to pick him up (and fearing that bringing him over the group of people would only further encourage what was now becoming louder and louder laughing- at us), I gave up and sat down next to Liam and asked him cow questions. As he was mooing and eating pretend grass (me: “Cow Liam doesn’t eat mud, and this real grass has mud, so let’s eat pretend grass.”), I watched the other kids whiz ball after ball into the goal, from more than 6 inches away, and thought of how much they must practice. I made a mental note to practice kicking the ball with Liam this week, and the tell him that farm animals aren’t allowed in soccer. We were only 25 minutes into what was going to be a very long hour of 3 year old tot soccer.
Liam turned back into a boy just in time for his session to end, and Andreas seemed enthusiastic to have his turn. There were tons of 4 year olds, and Andreas seemed to be handling it pretty well. I took advantage of the time before the coach made his announcements to give Andreas a crash course- how and why we kick the ball into the goal, how to kick hard and how to kick soft, and that we don’t touch the ball with our hands. He was listening so well, and I was so excited for his session to start.
The coach called all the kids to the center of the field. He welcomed them to 4 year old tot soccer, which prompted one boy to exclaim, “Hey, I’m 4!” Within a few seconds the kids were all yelling, “Hey, I’m 4, too!” One girl, who was overcome by the coincidence that they were all 4 in 4 year old tot soccer was running and yelling “We’re all 4! I can’t believe it! Everybody in soccer is 4!!!” I couldn’t tell if she thought it was a coincidence or a conspiracy. After a few minutes everybody came together and calmed down. Andreas was following instructions really well, participating when he was supposed to, etc. Then the coach told the kids they were going to play a game of Sharks and Minnows. Half the kids would pretend to be sharks, and the other half would be minnows. The minnows would each get a ball, would stand in the middle of the field, and would have to protect their ball from the mean sharks. The sharks were instructed to try to steal the balls from the minnows. Andreas was told he was a minnow, and I physically winced. This was bad, this was really bad. We’ve taught him that you can’t just take a toy from other kids, and as a result, when another kid tries to take a toy away from him he tells the other kid it’s not okay. He was standing there with his foot on the ball, and a mean shark approached. With a panicked/confused/apprehensive look on his face, he slowly backed away and said “It’s my ball. It’s my ball. It’s my ball.” The kid lunged, took the ball with a near-expert foot, and ran away. Andreas, confused, chased after him. The “shark” was a kid weighing maybe 30 pounds, so to protect his own safety I caught Andreas and told him it was just part of the game. That caused a full-scale, mach-5 meltdown. In the middle of the soccer field. After spending 5 minutes calming him down, I encouraged him to end this class on a positive note. I asked him if he wanted to be brave and go out and try again. With a nervous look he said that he did want to try again, so I hugged him and cheered him on.
When I got back to the sideline another mom, who was wearing nursing scrubs, asked me why I brought a kid who so clearly was not ready for organized sports. She told me I “should just take him home and bring him back when he’s more prepared for competitive play”. Gritting my teeth, I looked at this woman and told her he has autism, that he and I were trying very hard to do a good job, and I told her that she should stay out of it, unless she was offering to help “prepare him for a competitive environment”. I was seething, ready to cry, and totally ready to throw in the towel when I felt a hand touch my shoulder. The mom who was sitting on the other side of me had heard what I said, and she asked what my son’s name was. I told her it was Andreas, which she turned to tell the other parents around us. Then something amazing happened- they started cheering for him. Within a few seconds, ten people were yelling things like “Way to go, Andreas!” “Good kick, Andreas!”, “Nice job!”
I was so warmed by their show of support, and to me, it was a true display of what tot soccer was supposed to be about- a fun, supportive, kind place for young children to gain confidence and, maybe, a few skills. Us parents are a strange bunch. We have the most common of common grounds- love for our children. Yet, we often find ways to compare and contrast our parenting skills (and, as a result, our childrens’ skills) with each other. We have the power to build each other up and to tear each other down. I was having a really rough night, feeling entirely alone, and worried about my kids being a little different. I felt inadequate, and in a moment another mom made me feel absolutely terrible. In less time, though, another mom turned everything around for me. I only hope that I will have whatever it takes to show that necessary support for another mom someday.
After soccer we got in the car. Andreas and Liam were having a hard time calming down. They were telling each other how well they each did playing soccer, and then Andreas said, “Hey, Liam, I really liked it when you were a cow! Yeah, I’ve never seen a cow play soccer before, but you did great!” How could I not smile? My cow has some serious soccer mooves, and I think I’ll find my way, too.
Hello, Autumn. Nice to see you. Come here often?
10 Sep 2010 1 Comment
I love this time of year. I love football season, back to school shopping, falling leaves, pumpkins, costumes, impending holidays, family time, the weather…everything.
I love how it means the end to some things and the beginning of others. Swimming in the river is replaced with trips to the pumpkin patch. Barbeques are replaced with stuffed turkeys and school lunches. Swimsuits and shorts are replaced with jeans and comfy sweaters. I love waking up to a valley full of fog, and I love the smell of damp ground. I love holding a cup of hot coffee and snuggling under a blanket with the kids. For me, very few things can top autumn.
I used to approach Halloween so nonchalantly. I didn’t really care for it, had no interest in dressing up, rarely did anything beyond passing out candy to little kids. Now, with kids who are excited a few months out, I’m pumped! I’m already working on their costumes and I’m thinking of decorating the front porch. I love taking the kids to the pumpkin patch, and we had the best time painting pumpkins last year! We roasted seeds and taught the kids how to eat them. We didn’t get to take the boys trick-or-treating last year (Duck game, and I don’t regret it!), but this year we’re going crazy!
One of my favorite things to do is going to Duck football games. William and I have had season tickets since my senior year in high school, and it has been one of the few constants we have relied on. We love our seats (we sit around some awesome people!), we meet new friends, we get several hours from the kids, and we have time to enjoy a shared interest. Now, as our boys are getting a little older, we are starting to share our love for Duck football with them. We took them to the spring football game, and they both know how to put their hands together and yell “Oooooooohhhhhhhh”. Andreas says he’s going to grow up to be a linebacker, and Liam says he’s going to be a “bawl wunna”. We’ll see, but I do know that they’ll be joining us in Autzen in the years to come, and I can’t wait to share that with all three of my boys.
I love holidays. I love spending time with family and seeing everyone together and reconnecting. My family isn’t very close and, I’m sad to say, we don’t have a large family dinner unless I’m the one making it. Most years I do. However, William’s family does it right. His sister Laura and her boyfriend Mike host everyone at their home for Thanksgiving. There are usually 20-30 people and the best food you can think of (I wish I could get Mike’s grandma’s stuffing recipe- seriously, that’s the best stuffing I’ve ever had!) .Christmas means stockings and breakfast and family and kids opening gifts for hours. There are bags filled with wrapping paper and kids overwhelmed with toys and spiced cider and a beautiful tree poised in front of the window. It turns into a two-day affair, but it’s full of the best things about Christmas- family, shared meals, and excited kids!
Oh, and I’m one of those weirdos who actually enjoys black Friday shopping! I love getting to the store and standing in line at 3 am, and I have fun watching everyone fight over $2 bags of socks. I once watched a pregnant woman take a macho man to the ground over a $39 DVD player. That. Was. Awesome.
Andreas starts back to school next week, and Liam the week after. I’m going to have a few mornings a week to myself, which is super exciting. I’ve started writing a little more. So many people have told me that I should write a book and I’m happy to report that I’m in the early stages of doing so. I’d like to go back to school next spring, so I’m hoping to have a vast majority written before then. The boys are signed up for soccer through Kidsports, and I’m looking for a martial arts class for Liam (let me know if you know of any for a three year old!). For Andreas, my friend Nicci and I are in the beginning stages of a potentially amazing and exciting project that would do wonders for him. More on that soon, but know that I’m thrilled with the possibilities it may present for us! William is in far better health this year than he was last year, and he’s excited about football season and all that it entails.
I’m beyond excited that this time of year is almost upon us. I can’t wait to wake up to frozen grounds and the sounds of school busses and trick-or-treaters! What are some of your favorite autumn activities? Any special traditions your family adheres to? Let me know! I’ll be compiling a list in the next few weeks and could use some ideas and input!
Best autumn wishes to you and your’s!
Happy Birthday Liam!
26 Aug 2010 Leave a Comment
When Andreas was born William and I decided we wouldn’t take the chance of trying to get pregnant again. My doctor told me it wasn’t really an option, anyway, because tests showed I was already in the early stages of menopause. We had tried so hard to have one child, and with all the new love we felt for him, we couldn’t put ourselves through the same battle again.
When Andreas was around seven months old I was diagnosed with post-partem depression. I think it was caused by a number of things: the stress of having a baby who wouldn’t eat; pumping for several months; perimenopause; crazy fluctuation of hormones, and the stress of continuing to go to school (I had to turn in a term paper three days after I got home from the hospital). There was so much going on, and it seemed as though the anti-depressants my doctor was prescribing me were only making matters worse. It got to the point where I was doing everything I could to hurt myself, emotionally and physically. I felt guilty for being that way when I knew that I should have been grateful and I should have felt blessed by Andreas’s mere existence.
Then, one day, I woke up and it seemed as though the sun was a little brighter. Over about a week’s time I started feeling better, as though I was being pulled back into happiness. I enjoyed playing with Andreas, and I looked forward to being around William. I was actually able to become excited about going places, and I found joy in doing simple things again. Within two weeks the pregnancy symptoms started. I took the pregnancy test a week after that and realized we had another baby on the way.
William and I both told each other we were excited, but deep inside we both feared the worst; we had heard that post-partum depression gets worse with subsequent pregnancies. I decided that I was going to do everything I could to keep that from happening. Half-way through the pregnancy I stopped going to school because I wanted to relieve myself of that pressure and stress. We moved in with my Mother-in-law for the additional support and guidance (she was amazing through all of it!). Since she’s an RN we knew she would be the best help possible, and she is the most sincere, loving person. We did everything we could to simplify our lives, to prepare for our little one, and to anticipate the journey of becoming parents to another child.
Liam was born at 1:36 am on August 26, 2007. He was 8lbs. 4oz., and 19 inches long. He was and is absolutely beautiful, and William and I both felt…complete. That’s the only word I know to describe it. From the beginning everything about Liam was different than Andreas. Liam actually nursed (until a nasty case of mastitis, which made me go to formula- again, in the name of simplicity). Liam liked to be cuddled and held. Liam made eye contact. Liam liked to eat! It was all very exciting and new, and he was the perfect complement to our little family.
Don’t get me wrong- Liam had issues, too. He had really bad acid reflux. He projectile vomitted several times a day. He had bloody, mucus-filled stools. He stopped gaining weight. We were constantly taking him to Doernbecker’s Children’s Hospital in Portland to see his pediatric gastrointerologist. For several months it was believed that he may have had cystic fibrosis, but thankfully that test (finally!) came back negative. He was diagnosed with delayed gastric emptying syndrome, but they could never pinpoint why he had it. I watched needles and tubes and machines go over and through my child and I felt so helpless in all of it. But I never felt alone, and I never felt depressed. I had massive amounts of support from my amazing husband and my amazing mother-in-law. We just needed to help Liam get better.
Nobody ever told us just what was wrong with Liam. We tried several different medications to no avail, and we made a lot of environmental changes, and we just learned to handle things better than we had been. Over time he seemed to improve, and combined with everything else, things got easier. We hope still that nothing comes up in the future, that nothing else happens to cause everything to make sense. He’s happy and healthy and we hope the mystery surrounding his first year of life just goes away.
Liam has become quite an amazing little kid. He loves animals so deeply that I think he’ll surround himself with them his entire life. Now, for my own selfish reasons, I refuse to let him have pets. This doesn’t mean that he has none around- he acquires imaginary ones all the time. We also have friends and family members who generously allow Liam to love their animals. He also loves babies, so much so that he cradles his baby doll and kisses it’s forehead. He truly believes that the “baby cousin” in his Aunt Erika’s belly is just for him, that she’ll hand it over with no hesitation. He’s learning to share, though, so maybe he’ll understand by the time the baby comes that it does not, in fact, belong to him.
Some of the things I love the most about Liam: I love that he literally jumps with joy when he’s excited; I love that he has such enthusiasm for new things; I love that he is such an affectionate little guy; I love that he has a great imagination; I love that he enjoys eating, and that he’s an adventurous eater; I love that he tries so hard to talk, and he doesn’t get frustrated when I ask him to say something again because I couldn’t understand him. He’s absolutely amazing and I can’t imagine my life without him.
I talk about Andreas a lot, and sometimes I feel as though Liam just falls from the conversation. I’m trying to get better about this, but the truth is that I just don’t feel as though I need to worry about Liam as much. Call it crazy, call it intuition- whatever it is- I know that Liam is going to do well in life. I know that he will always be loved and I know that he will always feel loved. I know that he will always be excited about life, and I know that he will always bring excitement to the lives of people around him. I worry a little more about Andreas, but Liam will do well. I just know it.
Andreas was my miracle baby. He was the baby who taught me that nothing in this world is guaranteed, even if a handful of doctors have said it to be true. He’s the baby I had lost all hope in having, and he’s the one I still feel as though I’m battling to keep. Liam is the baby who saved my life. A miracle in his own right, he’s the being that pulled me from my deepest depression. He’s the one who has been here, lovingly cuddled in my arms, since he was born. When Andreas simply wasn’t capable of being hugged, Liam was right behind him ready to do so. When I felt as though Andreas’s issues were my fault, Liam was right behind him to prove me wrong. They have both blessed my life so deeply and in such unique ways. I will never be able to thank them enough for choosing me to be their mother.
Today Liam turns three years old. For three years and nine months I have had another light in my life, and I am forever grateful for whomever put him here. Thank you, Liam, and as you go through life remember one thing: you are love and you are loved.
Tune the Trumpets!!
21 Aug 2010 1 Comment
Feeding Andreas has always been a struggle for us. Quite literally, from day one, we have had to force feed him. When he was an infant we would wake up several times through the night to feed him while he was sleeping because he fought the daytime feedings so much. During the day we tried all the tricks in the book- playing music, running the vacuum, having the fan on, singing to him, humming, chanting, we tried ever bottle on the market, we did the “binky-pop” (we would give him the binky and- very quickly- pop it out and replace it with the bottle)- everything. It was not uncommon to spend 2 hours forcing 2 ounces of formula or breast milk into him.
We thought things would change when he went to solids, but then he refused solids. We couldn’t get him to eat anything that wasn’t pureed until he was 13 months old. He would eat 4 things, so we tried sneaking other things into those preferred foods. He wouldn’t physically touch his food with his hands and he couldn’t hold a spoon or fork, so we were having to feed him every meal. I didn’t notice how far behind he was developmentally until we started spending time around another child who was only a few weeks older than Andreas. That kid was eating hamburgers whereas Andreas was eating pureed sweet potatoes. I knew something wasn’t right, but he was meeting so many other milestones that I just assumed I sucked at the whole parenting thing. I must have been doing something wrong.
We had Liam when Andreas was 18 months old. During the pregnancy people would ask if I wanted a boy or girl and I would answer “I don’t care, just so long as he or she likes to eat!” I wasn’t kidding- I wanted a kid who actually enjoyed food, who was willing to try new things, and who didn’t have to be coaxed to survive. The first time Liam tried to steal an orange off the table- at about 9 months old- I cried. Things were so different, right from the beginning, and that was when I realized that Andreas’s issues were not my fault, but rather a symptom of something with much deeper roots.
This was about the time Andreas was diagnosed with autism. I hadn’t known that Andreas’s “picky eating” was all related to a neurological disorder. There were red flags from day one that I had never been told to look for. I don’t want to say that I felt vindicated in hearing this, but the truth is that I felt relieved. I finally had a reason for his eating issues, and from that I felt confident that we could find a solution.
We first started working on the basics- getting Andreas to allow us to feed him. We began by letting him play with a small toy while we fed him a preferred food by spoon or fork. After a few weeks, we took away the toy and used a “first/then” technique to get him to eat that preferred food. Through all of this we were allowing Andreas the play with the food, thus giving him the opportunity to become more comfortable with the sensory experience of eating. Within a few months we began experimenting with new foods mixed into the old foods. This step was really hard and kept us stuck for close to a year. Andreas is stubborn and obstinant when it comes to eating, so we had met our match. We decided to go in a different direction.
We introduced the “learning plate”. At each meal where there was a new/non-preferred food, we set a small plate by his meal. If there was something he didn’t want to eat he had to move the food to the plate by himself. Once we had that down, we told him he had to ‘kiss the food goodbye’ before he put it on the plate. Soon enough he was able to tolerate keeping the food on his plate and kissing it goodbye.
We got stuck in a food jag at this step, though. It seemed that, although he was tolerant of it’s existence, he didn’t care to try eating any of it. This is a hard line to tow when dealing with a child on the spectrum- it’s difficult to acknowledge their strides in development while keeping an eye on improving even more. We just kept faith that one day he would actually pick up something new and maybe that would be another step in the right direction.
I like to take the boys with me to buy food from the store and the farm. I think it’s a good experience for them to see, feel, and smell the food in it’s most raw form, produce especially. We went to the farm yesterday and the boys picked and counted kiwi fruit, helped scoop the berries, used the tongs to pick up green beans, etc. Tonight we had a large salad for dinner, which I knew the boys wouldn’t eat, so I made them something different. However, I wanted them to also have fresh produce, so I asked them to choose a fruit or vegetable from what we had bought at the farm. Liam chose blueberries and Andreas, typically, just ignored me. I put a few on each boys’ plate, expecting that Liam (my fruit thief) would take brother’s at the end of the meal.
We all sat down and Andreas looked at William and asked, “Daddy, will blueberries make me grow big?” William, with a look of apprehension, said, “Yeah, they’ll help your muscles grow.” Andreas, with a fleeting look of fear, picked one up and popped it into his mouth! We all cheered him on and clapped and exclaimed over his growing muscles, then he popped in another! By the end of the meal he was asking for more, so I gave him 6 more, and he ate those as well. Then I filled a small bowl and put some whipped cream on top and he ate all of those, too! My arm is slightly bruised from the 12 times I pinched myself. I can’t believe he actually ate them!
I know some of you are rolling your eyes right now, thinking I’m insane for writing an entire blog about my son eating 30 or so blueberries. Yeah, maybe I’m a little overly excited…maybe. Maybe it’s not such a big deal to every one else. However, here at our dinner table, I just saw my son overcome an obstacle that has been plaguing him (and us) for 4 1/2 years, and I saw him defeat the fear, which was displayed on his face, and pop one in anyway- one berry at a time. For him, for me, for our family- this is an accomplishment to be celebrated.
I don’t expect that he’ll be eating steak and potatoes tomorrow. I’m not sure he’ll eat another blueberry, either. For tonight, though, I feel a little as though all of our hard work is finally paying off. Those may have been blueberries, but for me they were much more. Tonight when I go to bed I’ll know that Andreas has over come yet another wall, and the walls ahead of us are looking smaller and smaller. Today we won.
BTDT
13 Aug 2010 3 Comments
I’ve talked to several moms recently who have asked me to compile an ongoing list of practical tips about parenting within a neuro-diverse household. Some of my information is stuff I’ve picked up from other people, some I’ve learned in books, some I’ve come up with entirely on my own. Each time I am told about something new to try, or something to use within our home, I ‘filter’ it through our needs: Is it simple to use? Does it cost a ton of money? Is it potentially harmful for the boys (even if the only “harm” is that it takes away from them being kids)? How much time am I willing to dedicate to this activity/project/etc, and what other activity/project/etc. am I willing to sacrifice to make that time? You get the idea.
Something to keep in mind: right after Andreas was diagnosed we were told by an amazing person that we would need to learn how to filter all of this information. Autism is caused by an unknown source and there is no known cure. Due to that, we parents are often willing to grasp at straws in a desperate attempt to “cure” our little ones. As a result there are literally thousands of companies that have sprung up with the latest ways to “cure” our children. In addition, when one family finds something that works for them (even though it may have just coincidentally been introduced at a time when that child was making great developmental strides), they feel the need to share with the world their magic cure. In plain terms, we get campy. We look for a cure, and who can blame us? This is a tough road to travel, and if there’s a chance to grab a ride back to the station we’re gonna take it. Unfortunately, a lot of these magic “cures” are often expensive, sometimes hazardous, and always fall short of truly curing autism. The only thing that can cure autism, in my honest opinion, is the ability to cure other people’s ignorance. Autism is not something to be cured of- it is something to be worked through and around. It is a learning style. So, keeping that in mind, here are some of the tips we’ve picked up along the way:
-Pick your battles and focus on the end result. This is perhaps one of the hardest ones to grasp, but once you do you’ll feel the weight of the world lift off your shoulders. For example, one of Andreas’s goals is to be able to dress independently. Therefore, one morning I told him to go pick out his clothes and that I’d be right in to help him. I came in and he had chosen a long-sleeved shirt. I immediately told him it was too hot for that shirt and picked a short-sleeved one for him. The next day he picked the same long-sleeved shirt. Instead of correcting him, I said “Ok”, and he put it on. He got hot a few hours later, went in his room, and came out with a short-sleeved shirt on. The goal was for him to independently dress himself; he put one shirt on, realized his own discomfort, and then corrected the situation. Goal surpassed, even if it wasn’t in the right shirt initially. I had to pick my battle, and stay focused on the long-term goal rather than the short term correction. The route our children take isn’t nearly as important as the destination where they arrive.
-Embrace the unusual. One of Andreas’s and Liam’s favorite games that we play at home goes like this: we pull all of the cushions off the couch and love seat and use them to line the entire living room. One of us- either me or William- sits on one end of the room with a gigantic exercise ball, and the kids take turns running like mad men and hitting the ball like linebackers. The go flying! They love the game, and each time we have told people or shown people this game, they think we’re nuts! The truth is, though, that they are both getting some of the best proprioceptive input possible, we are providing a safe and structured environment for such input, and we can end the game at any time- meaning we control the crash. When Andreas is really acting up, or as preparation for a guest in our home, he really likes to lay on the ground while we (gently) hit him with pillows. It’s all strange to most people, but I couldn’t care less so long as my children are getting what they need.
-Keep an open mind with toys. For the longest time Andreas’s favorite toy was a spoon. I didn’t have to play with it, it was safe, and it fit nicely in his hand. Who cares that it didn’t come from a toy aisle? Kids like weird things, on the spectrum or not, and we should just work with it. Liam loves baby dolls. I don’t care that he’s boy- he’s learning how to care for a baby, and that’s a skill everyone should know. We took the kids to Target and told them to pick something that cost less than $5. They both chose Disney princess dolls. Who cares?! They had a good time tromping them through the dirt in the backyard.
-Take the time to appreciate how far you’ve come, and to remember where you are going. Both of my boys have made some gigantic leaps in development in the last year or so. I get so caught up in what we’re working on now that I forget how far we really have come. I find that it helps to set aside five minutes each week to think back, and then I spend about fifteen minutes thinking of what we’re working on now. I write a short list of what I need to remember for the week, and then I let it go. My kids are my life, not their diagnoses. That dedicated time allows me to keep everything in perspective and it keeps me from over-analyzing too much.
-Set up your house for success. If you have a fearless child, make sure that danger zones are a little less dangerous (get a range that cools faster than older models, put all things capable of being eaten out of reach, cover all corners and egdes, etc.) Set up a permanent break area within the home (an awesome idea is to get a gigantic refridgerator box and line it with egg crate mattress topper, then staple a sheet over it. Toss in a few pillows and maybe a weighted blanket). Use the same communication system in your home that your child uses at school (like icons or sign language)- make these things seamless, so as to allow the best environment for growth. Store your child’s favorite toys in tupperware or large rubbermaid-style boxes. The idea behind this is that it will force them to interact with an adult to get what they want. Instead of immediate access to a preferred toy they have to come ask for it, which means they have to communicate. Sabotage, yes, but sometimes that’s what it takes. Be creative and find what works for your whole family, and remember to FILTER!
-Create a Blessings Jar or Poster. This is an idea I got from one of Andreas’s teachers. There are some amazing things my kids can do, (sometimes because of, but often despite) their diagnoses and/or delays. I have compiled physical lists of these awesome qualities, and I keep it nearby. I often find new things to add, too, which means it is constantly growing. I keep them on large pieces of paper, but I know some people who put them on small strips and put them in a jar. When you need a pick-me-up or a breather, you can look at the paper or pull out a few strips and be reminded of the little rock star you’re raising (even if said rock star just ate some lotion).
-Remember that no one person’s needs are more important that anyone else’s. Finding a balance is hard and seems impossible in the beginning, but it is absolutely crucial. While the child on the spectrum may need some special attention, it doesn’t mean that they need all of the attention. Nor does it mean that you should sacrifice your own needs. It will always be a work in progress, but find some time to be your own person, not just a parent of a kid on the spectrum. That will build the strength you’ll need to fill the secondary role.
-Take the kids- everywhere. This one was really hard for me when they were really little. It seemed like I was dealing with two babies who wanted to motor in opposite directions. Not easy, and definitely harder than anyone could imagine (unless they’ve been there). However, as they got a little older (around Andreas’s third birthday) I found that it was easier and easier to do, and it really made a difference in how they handled the day. We can now take them to see a movie, dinner at a restaurant, a minor league baseball game, to festivals and fairs, to the zoo and the aquariums, etc. It may not seem like much to parents of neuro-typical children, but considering that at one point we nearly had panic attacks at the idea of taking Andreas to a restaurant, we’re doing really well. A few things that helped us:
-Come up with a few witty responses to the jackasses who have the nerve to tell you how bad your child is behaving and keep them on the tip of your tongue. You can’t imagine how empowering it is to have something to say back to those idiots. For example, Andreas was having the mother of all meltdowns at the grocery store one time, and I was sitting on the floor in an aisle trying to calm him down while Liam was crying, sitting in the cart. This lady walked up and told me I needed to get help for my kids because they were little hellions and I obviously was not capable of caring for them myself. I said, “Okay, since you are clearly offering your help because I can’t imagine why else you would come over to tell me that, go ahead and pick up the baby and walk up and down the aisle. That tends to calm him down. I really appreciate you offering to help.” She actually did it! What was she going to say? ‘Umm, you need help and I’m going to tell you that, but I won’t help you if you ask’. I think not.
-Always have something (not food) to help calm your child down. I carried a receiving blanket in my purse for a long time that I would pull out and put on Andreas’s head when he was over-stimulated. Our current vice is sunglasses. I’ve taken a pop-up tent along when we’ve gone to someone’s house for dinner or other family events so the boys have a designated break area. We’ve also used a sleeping bag. For places where you won’t have that kind of space (like at baseball games), get there a little early and take a walk with your child. Together you can find a safe, appropriate place to take a break if you need to. (Also, in new places, be sure to point out the bathrooms. Even if your little one still needs to be accompanied to the potty, they will feel more open to the idea if they know that there is one available.)
-Don’t be afraid to ask the staff for assistance. Each time we go to a new place we ask someone who works there where the quieter seats/area and, when appropriate, we ask to be moved there (easily done at restaurants). The first time we took Andreas to see a movie we went to the cheap theater and chose the very first showing of the day. Since there was nobody else there, we asked them to slightly turn down the volume and to keep the lights half on. No problem, and that one positive experience made him trust that the darker, noisier theater the next time was still safe. Don’t be shy about this- be fair and don’t ask for anything outrageous, and you’ll find that most places are happy to have you and your kids as customers.
-Personalize your experience. Andreas loves going to Chuck E. Cheese because he likes to watch the lights on the games, and Liam is still too little to play any of the games. We can go there and buy drinks and let the kids “play” for free. Sure, we could try to make our kids play with the machines the way other kids do, but they seem perfectly happy doing what they’re doing (and it’s basically free), so I have no issues with making it what we need it to be. You may end up going to the baseball game and playing with a puzzle the entire time, but you’re there and your child is getting the experience regardless. Who cares if they don’t know what happened at the end of the 8th inning?! It’s not the end of the world if you can’t make the square fit into the circle, so long as the square still had a good time.
-Get an outing buddy! Find a friend who has kids and go out together. You have no idea how much easier it is when there is someone else with you who speaks Adult. I would discourage a big group, though, as it is easy for kids on the spectrum to fall out of the mix, and it can easily become overwhelming.
-Take your own food- whenever possible. Besides the obvious economic reasons, it is really hard for impatient kids (and adults!) to stand in a line with other impatient people, add to that the fact that they are hungry and uncomfortable and you’re begging for a mach 5 meltdown. I’m upfront with the people at the entrance- we’ve got food, we’ve got two kids who won’t wait in line, and what would you like me to do? Nine times out of ten they search our food to make sure there isn’t any alcohol or whatever and they they let us in. No biggie. When it isn’t possible, though, have one adult wait with the kids and have the other one go get the food.
I’ll post more tips as they come to mind, and I’m sure there are some that other people have found success with. Let me know what those are and I’ll add those, too! The very best source of help and information is people who have been there, done that, and know what they’re talking about.
Best wishes!
Fly-By Fruiting
03 Aug 2010 Leave a Comment
Yesterday, as I was changing his diaper, Liam was telling me a long, intricate story (“intricate” if, like me, you understand Liamese) about something horrible that happened to him. He said that there were “mean, big, neaky” chickens that were chasing him outside and throwing “oob, wimey, gucky, pewple” eggs at him. He said they gave him “weawy big owties”, and that they hurt him on the head. Obviously, there is no way that chickens would have the capability of throwing a discriminate object at my little victim, so I immediately thought he was recounting a nightmare or making up a story for sympathy (totally not out of the question for the resident Drama King, right?!). I told him he was safe and that the mean chickens wouldn’t throw any more eggs.
A few hours later I was in the back yard watering the plants and Liam joined me. I walked over toward the plum tree and commented with fake-entertain-the-child enthusiasm that there were birds on a nearby branch. Suddenly, with a flap of their wings, a huge, slimey, yucky, purple plum fell from the branch and came within 6 inches of my head. Liam, with the most terrified look on his face, screamed and ran for the safety of the covered porch. Wailing, he started yelling “Not again!!” It all clicked in my head, and I stood there laughing, which made Liam think I was in cahoots with the mean old “chickens”, angering and terrifying him even more, and the poor kid wouldn’t come near me for several minutes (read: until I stopped laughing, which was really hard to do).
Let’s break it down, shall we: My kid was, at some point, in the back yard playing under or around the plum tree when a bird (probably of a slightly larger size) landed on a branch. Said bird’s weight (or maybe the movement of the branch) caused a few plums to fall on or around Liam. Instead of just brushing it off and moving on, Liam thought that the chicken (bird) was maliciously throwing it’s unborn young at him in an effort to maim and destroy. Because, you know, that makes a lot of sense.
Oh, the adventures we shall have in the next 15 years!
