So I have this girl...
I had the opportunity this past weekend to participate in a local theater production called the Mamalogues. It was the brainchild of a friend of mine who feels that, as mothers, we all have valid stories to tell. While I know my story is not unique, and that many of you could probably just take out my daughter's name and insert the name of your child, here is the story I shared:
So I have this girl, she’s 18 years old, going to be a senior in high school in the fall, and has a heart of gold. When I mention her name I always hear, “Oh, I LOVE Izzy!” That wasn’t always the case.There actually was a time when teachers would see her name on their roster, roll their eyes and wonder how they were going to make it through the year. There was a time when no one, not even her extended family, would come to her birthday parties.
Izzy was born the last of 3 children, with almost 5 years between her and her closest sibling. She was a tough baby, cried a lot, was kind of small, not like my other 2 at all. I chalked it up to disposition, and the possibility that I may not be remembering their infancies with 100% accuracy. While she was a toddler Izzy really had me questioning my parenting skills. Everything I asked her to do was a battle. My patience was nearly nonexistent, partly because of her behavior and partly because of other people’s reaction to her.
Like when we tried a couple of different times to find a family church. Izzy’s flamboyant personality caused Sunday school teachers to politely ask us to try other alternatives for her if we wanted to continue to attend services. I tried taking her to story time at the library, to gymnastics classes, and to swimming. When none of those activities were consistently successful, I started to get nervous about what school was going to be like for her. Only I wasn’t prepared for how bad it would be. I wasn’t prepared for how crushing it would feel to have so many people reject my child.
I started to feel like a helicopter mom, so I decided to enroll Izzy in a daycare, give her other children to play with (and a chance to be away from my hovering!). Very shortly after she began Izzy was asked to leave. She had had a particularly noisy incident at naptime that ended with the staff locking her in a bathroom until she was quiet.The next place was a home childcare. The provider mentioned to me a couple of times that Izzy made the other kids uncomfortable because she always wore socks on her hands. I didn’t understand the problem, I thought it was adorable how she talked in third person with her little puppet hands! That sitter called me over the holidays and said she was going to stop doing childcare, effective immediately, so I needed to find a new place for Izzy before school started up again. I found out that never happened, she just didn’t know how to tell me she didn’t like my child. The next sitter was at least honest and told me she couldn’t handle Izzy, and didn’t want to watch her. And once it was finally time to start school Izzy’s behaviors did cause her to get suspended, multiple times.
I started to wonder if her home life was to blame, she had endured a lot of stress for a little girl (her daddy and grandma had cancer, and then her dad and I divorced). I assumed her behaviors were the result of her disposition and trauma, not anything else. When she was kicked out of first grade, and then second grade, I felt hopeless. By that point I was raising 3 kids alone, I had amped up my Prozac to 4X the original dose and still had this constant lump in my throat. I was feeling alone, and completely responsible for all of Izzy’s struggles. I mean, how did I make such a troubled person? What did I do wrong? She didn’t deserve this, she didn’t ask for this, and she was sooooo unhappy. She was running teachers out of her building (both her Kindergarten and First grade teachers retired after Izzy’s class!). For the longest time, her sister and brother were embarrassed to have friends over. The first time I talked to our doctor about my concerns and I was told Izzy was just a “spoiled brat.” Most other people shared that sentiment. But by now, deep down I knew this wasn’t true. So I kept digging. I researched her behaviors, I attended a gazillion lectures and workshops, I even went back to school to try to figure it out. When your child is suffering you will stop at nothing to alleviate their pain. I kept taking her to doctors and therapists, until someone said those magic letters- ADHD. Great, a starting point to get her some help!!
However, after just two years of therapy and medications Izzy‘s behaviors hadn’t really changed. She still didn’t like school, still didn’t have any friends, and now she was even was being targeted by bullies. Sometimes she would have meltdowns and cry so ferociously that she could not return to class. That’s when I would get the dreaded phone call, but before they could speak I already knew what they were going to say, “ You need to come get her, we can’t deal with this right now.”
By the time she was in 4th grade, Izzy’s therapist suggested I have her evaluated for autism. What? Was she serious?? At that moment I felt my whole world collapse. It literally felt like the ground dropped out from under me. My chest clenched, my ears shut off. I felt like a complete failure. I sat in that therapist’s office thinking “Why?” Because there is no turning back, no “growing out of” autism. Then, when that diagnosis was actually confirmed, I grieved, hard. I mean, I’m an educator, I work with kids with disabilities…how could I miss that about my own child? I’ll tell you how, it sneaks up on you. As a child grows we make little adjustments, one day at a time, and pretty soon all the strangeness is just your reality. It doesn’t seem so strange when its what you live every day. It can even be funny in retrospect. Like the time Izzy was watching a movie and her hair kept tickling her face, so she cut it. All. Or how, even to this day, she prefers to wear costumes (mostly ears and tails) over “regular” clothes.
At the end of 6th grade, when it was time for junior high, Izzy was panicking. She knew she would not thrive/survive that environment. We were lucky enough to find a school where she could start fresh, repeat 6th grade and stay through 8th. This school was pivotal in her opinion of school. And of herself. They welcomed her in, treated her like the valuable human being that she is. They made her proud of her unique view of the world. They helped her notice when she was making good choices, instead of waiting to punish the poor ones. Over time that allowed her to notice all the amazing things she does well. And, by reminding all of the students that every one of us has struggles, the level of empathy at that school was unlike any I had ever seen . We all need a bit of gentle kindness in our day, a safe place to learn and grow. I always hoped that my home would be that place for my family, but realistically I know it takes more than the good intentions of one momma to make a successful person. She needed to feel safe and secure throughout her whole day, especially while her confidence was rebuilt from ruins.
Since moving on to high school Izzy has still had some conflicts, but because of the strong foundation she was able to build during such an important growth period she believes that she is here to make a positive difference and has been able to resolve any issues fairly quickly. She just needed time, support, and people to patiently teach her appropriate behaviors when she is feeling overwhelmed. It felt good to have the backup, as a parent, from people who treat Izzy respectfully while guiding her to her fullest potential. Now she is a shining light in her school, not the student teachers groan about. Her perspective on the world has made my life so much more interesting and knowledge filled, so much more satisfying. People sometimes ask “how do you do it?” I didn’t realize I had a choice. This is my child, this is my life.
To Gluten Or Not To Gluten, That Is The Question
Such a hot topic! And since I am going to a workshop about eating gluten-free tonight I feel like this is as good a time as any to explore the subject in greater depth.
I come from a long line of folks with intestinal issues. Bloating. Gas. Indigestion. You name it, someone in my immediate family has experienced it. And I was no stranger to feeling uncomfortable after a meal, I just figured it was something I was predisposed to and therefore not able to do anything about. When I began to experience other symptoms, such as joint pain, acne breakouts, lethargy, depression, and looked into possible causes I learned that these could all be side effects of a gluten sensitivity. Interesting, and didn't require me to take more medicine, so I decided to give it a try.
What I learned is that going gluten-free is so much more complicated than I ever imagined! I kind of thought I could stop eating bread and the world would be wonderful. Wrong! Gluten is a protein found in grains including rye, barley and wheat. These grains, evidently, are in everything I love to eat or drink. And in a lot of places I wouldn't expect, like packaged soups and chocolate bars. It kind of made me crazy. But it also made me learn what I was actually putting in my mouth/body and make more things from scratch. I've been able to step back from packaged food a bit and eat more naturally, something I have been meaning to do for, well, forever. Some things I cannot make from scratch so I have had to try to find a suitable substitutes at the store. Like pasta, one of my favorite meals. Most gluten-free pastas do not compare to their gluten filled cousins. It took A LOT of experimenting with a lot of products, but I have found varieties that I am happy with (especially in casseroles). Bread is the other staple I miss. Gluten-free breads are notoriously crumbly (Gluten is like a glue when baking, so no gluten = crumbs). The magic ingredient when baking at home, for my recipes anyway, has been xantham gum. You only need a tiny little bit, it doesn't change the taste, but everything stays together like I'm used to!
Long story short, I do feel better after going gluten-free. And I do notice when I eat gluten, like when I had Chinese carryout this weekend not knowing that soy sauce has wheat. Oops! I blew up like a balloon, couldn't bend my fingers, and took 2 naps yesterday! Soooo not worth it.
On the flip side, I feel like I should mention that our whole gluten-free adventure started when my daughter, who has autism, was put on a full elimination diet (no dairy, gluten, eggs, or peanuts). She hated it. She swore up and down that she felt worse without gluten, and was so angry with me that I was forcing such atrocities on her. I thought she just missed pizza and was being a typical grumpy teenager! Turns out, she was right. Her doctor ran some allergy and genetic tests and we learned that she was in fact not gluten sensitive but was in a category of folks who don't metabolize folate appropriately. By not absorbing/using folate correctly she was more tired, moody, anxious, fearful, foggy headed...basically, she felt really bad. And where do most Americans get their folate? Yep, wheat products. We add folic acid to most of our flour, and without it she was miserable. Since re-introducing gluten to her world she has not had sleep problems, no anxiety attacks, no random crying, and her grades are soaring.
Our story is not unusual. It is very difficult to find the right fit for your family when looking at dietary interventions, since we are all unique and individual. But I definitely believe in taking the path of least invasiveness when treating many ailments, such as eliminating foods before loading up on medications. And like with any new treatment, always discuss big diet changes with your physician before implementing. It is not right for everyone, but when it is it is so worth it.
How many parents do you know who think they have done a perfect job raising their children? None, right?!! That is because we are all human, we all make mistakes. And for whatever reason, when you have a child with a disability you feel like people are judging you more harshly, watching your every move so to speak. That can lead us parents into a tailspin of doubt that can be really hard to find you way out of. I have gathered together some strategies today that have worked well for myself and other families I know when dealing with the ups and downs of parenting a child on the autism spectrum. These strategies will ideally keep you, and your family, out the tailspin altogether and maybe even enjoying your time with one another!
1. Make "Me" Time.
That goes for everyone in the family. We hear a lot of experts talk about taking care of yourself in order to be the best parent you can be, but people forget that children need their "me" time too. They need time and space to just relax, explore, let their minds wander without grown-ups directing their every move. For me it means waking up at least 30 minutes before anyone else so I can slowly prepare my mind for the day. For my daughter it means spending time in her room, as soon as she gets home from school, and simply listening to music and looking out the window. It makes for much kinder interactions, and it is noticeable when we have to break from our routines.
2. Plan Thoughtfulness.
In the hustle and bustle of parenting it is easy to overlook all the helpful things our friends and family do for us on a regular basis. But everyone likes to be appreciated, so make a habit (or put it on your schedule) to send words of thanks to some of your support network each week. Let your children see you expressing your thanks and appreciation too, so that it becomes more natural for them to recognize kindnesses. And don't forget to thank children for their efforts as well!
3. Be Screen-Free.
No, not all the time! I'm not that naive! But I have heard from a lot of families who enforce (at minimum) a nightly cut-off time for any screens, which includes phones, t.v., computers, handheld games...everything, for everyone (YES, parents too!). Research suggests that we allow our minds to slow down and adjust for sleeping by dimming the lights, turning off electronics, and listening to classical music at least 30 minutes before going to sleep. Perfect setting for a good bedtime read, don't you think?!
4. Declare Home a Safe Zone.
By no means am I implying that disagreements aren't allowed at home. However, I am suggesting that an arrangement be made that discussions happen, listening happens, and feedback happens...all with the intent of creating more capable, caring, successful people. A lot of conversations in homes (especially between siblings!) can be downright mean-spirited. I like the idea of home being a safe haven, where we can express our feelings and opinions without the fear of being attacked, and that really cannot happen unless everyone in the home is working from a place of growth rather than defensiveness. When you have a family member with a disability there is often more frustration than in a typical home. Just listening to one another, instead of trying to stir up controversy or play the blame game, is a wonderful way to remind our family that they are valuable and important.
I cannot tell you how many times a deep belly laugh made the difference between a good or bad day in my life! From the outside we might look incredibly goofy, but get those happy endorphins flowing and I don't care how silly I look!
Overall, these sound easy enough, right? They aren't though. They take some work. New routines can take anywhere from 21 days to a year to become habits, so be patient with yourself and your family when starting something new. I have seen plenty of homes where many of these ideas are a way of life, and it is well worth the effort in my opinion. Your family is worth it. And the more kindness you share, starting at home, the more kindness that will come your way. I don't know how or why it works that way, it just does. So, like Ellen says, be kind to one another.
Who do you believe?
A common thread in the autism world is that there is no common thread. So whom do you believe? How do you know what new trend to follow or try with your child? I’m going to give a few pointers on ways to sift through all the research, news articles, Facebook posts, celebrity endorsements and e-newsletters so that you can feel more comfortable with the treatment your child receives.
First: Who is sharing the information?
Check to find out the original source of the information. Is it a peer-reviewed research article? Is it from a reliable medical foundation (think American Academy of Pediatrics or Mayo Clinic)? Is it from a non-scientific source, such as People magazine? Don't get me wrong, I’m not knocking People magazine. In fact I appreciate how publications such as this introduce new ideas to the public and spark conversation. There has been many times when I’ve seen an article in a doctors’ office waiting room that has made me curious enough to learn more about a topic. However, it is important to know who is writing and sharing the information so that you may make an educated decision on whether to incorporate the material into your family’s life.
Second: Why are they sharing the information?
If the source of the information is funded by an outside agency, know what might be in it for them for the public to be aware of the information. For example, if a big drug company funds a research study on the effects of medical interventions for certain behaviors related to autism, and the study finds their product to greatly improve behaviors, how reliable is the study really? Unfortunately there is a lot of research done this way, so be careful to find out where the funds to research or publish came from before implementing a change.
Third: What kind of investment is involved?
I’m not just talking financial, although that is a huge component. But we already lead very busy lives, so we need to think about the time investment that a new therapy or treatment plan might involve. How will it impact your family as a whole? Will the benefits outweigh the negative impact? We often function in survival mode day-to-day, but consider the long-term effects by asking yourself questions such as will a little extra time now create a huge amount of benefit (for everyone) in the long run? And the financial investment may not be an option for you either, since treatment is typically long and costly. Even with insurance a lot of families cannot take advantage of all the interventions they would like because of the cost of copays, or the fact that insurance does not cover all treatment options. So is this time effective and cost effective for your family?
Fourth: What does you gut tell you?
If you read something and it just feels wrong, then it probably isn’t the right treatment for your family. I’m not suggesting turning away every new idea, not by any means. But, after you have done sufficient research on a topic yourself, if you feel like the information is too out of touch with your lifestyle you probably shouldn’t try it. Just try to keep an open mind and learn about the new research and treatments coming your way…there was a time, less than 75 years ago in fact, when science said autism was caused by bad mothering (remember hearing about Refrigerator Moms anyone!). Thankfully we now know that is not the case! Let’s be grateful that there are scientists out there brave enough to keep looking for answers so that our children may lead happier, more comfortable lives.
Welcome to the Land of Sunshine! Today is International Autism Awareness Day, which I thought was as good a time as any to start sharing some thoughts on the topic.
My daughter has autism. She also has brown hair, blue eyes, a twisted sense of humor, an enormous overflow of empathy, and an incredible artist eye. She is a lesson in patience, a constant reminder of the impact of our words, and my endless source of joy. It took almost 18 years to get here, but it was worth every minute. How, you ask, did i turn a potentially devastating diagnosis into something so amazing? Sunshine. And lots of hard work. Don't get me wrong, I am far from perfect. But enough things went well in raising my daughter (and enough people held my hand along the way) that she has been able to take her gifts and soar.
I made a conscious decision early in my daughter's life to be positive. I decided I would gather as much information as I could get my hands on, talk to as many professionals as would take time to speak with me, and develop a network of kindness with which to surround her. In my blog I intend to share some of the wonderful resources that have made a difference in our family, as well as try to keep up with more current data and tricks of the trade. I hope to touch your heart, offer glimmers of hope, and loads of smiles.
Here's to my 1 in 68!
Colleen writes with the real-life experience of raising three children as a single mom, one of whom happens to have autism. With too much on her plate, humor is Colleen's survival technique, often to the horror of her children! Welcome to the Land of Sunshine!
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