Hello! Since we're all still new to each other around here, now is the time for me to admit that I'm one of those people. The "decorate for every holiday" people. There are boxes in my basement that are filled with decor for minor holidays like St. Patrick's Day, and I've honestly lost count of the ones for Christmas. It gets a little overwhelming here.
However, with J in our lives, we've learned over the years to watch out for things that can scare or overwhelm him-for example, while he's been cool with actually meeting Santa, he's not always comfortable sitting on his lap. We let him make that call. And we try to go at an off time to meet him, because standing in line is a one-way ticket to a meltdown.
Halloween is kind of a mixed bag for the kiddo-he likes the idea of going door to door to collect candy, and he thinks some of the decorations are cool. On the other hand, dressing up was a struggle for a while (he's gotten much better with that), and motion activated decor is a big no-no. It makes going shopping interesting, because every store in the city seems to have some sort of dancing skeleton or cackling witch lurking behind a corner.
Over the last few years, we've worked up a few tips for getting through the spookiest time of the year with a sensory-challenged child, and I wanted to share them. It's mostly common sense, but when you're so excited that your three year old looks so cute in his plush Brobee costume that you lose sight of the fact that he hates the feeling of the material, common sense goes right out the window.
1-Let your child pick the costume. This may sound super obvious, but when your child is littler, or maybe is non/limited-verbal, it can be easier to just choose based on the child's interests. The Brobee costume, for example, was cute and furry and came with a matching hat. And J LOVED Brobee. How could it go wrong? Well, for example, the hat was just tight enough to bother him. And the inside of the costume was scratchy. And it was hot. It took a few wearings for him to get used to it enough to stand to wear it for trick or treat, but he still wasn't happy with it. Last year, we let him choose, and he picked Jedi robes. This year, he picked Sheriff Woody. Those costumes were a lot better for him-looser fit, soft materials, not bundled up like a tiny arctic explorer.
2-Listen if your child doesn't want a costume. There's other choices out there-we improvised a soccer player costume out of J's wardrobe one year, because he couldn't handle wearing Brobee on a warmer day. There's always clever t-shirts to be bought or made, or costumes to improvise. Wear an apron, carry a mixing bowl and whisk, and your child is a chef. If your child will tolerate face paint, go with an animal or monster makeup.
3-Practice if you can. We usually take J to a trunk or treat, or other organized activity. We've trick or treated at the zoo and the mall. It's a good way to practice the social interactions (saying "Trick or treat!", choosing one piece of candy if offered, and saying "Thank you!") in daylight, and it's also a way to get used to seeing other costumes and decor. Also consider taking a walk in your neighborhood after dark, using a flashlight. It'll give your child the opportunity to see houses that may have illuminated decor.
4-Take your time. If your child wants to pack it in after three houses, do it. If the kiddo decides it's the greatest thing ever and wants to hit every house in the area, do what you can. But don't make it a case of rushing from house to house. Slow down, look at the houses and other trick or treaters. Take the time to talk about what you're seeing with your child. We're probably going to let J take pictures of things as we go, since he tends to use them as a sort of social story. It's also a good idea to have a flashlight on hand, as well as a small calming toy to help with anxiety.
5-Don't be afraid to skip trick or treat. If your child just isn't loving it, don't force it. There's other options! Let him or her help you hand out candy. Watch a Halloween themed show or movie. Have some special treats or games. You can still have fun without going out!
6-Don't forget to eat!! Make sure your child has a chance to eat before going out. If you can't do dinner, at least have a healthy snack to tide them over. It'll cut down on binge eating out of the candy bag. Speaking of candy, if you have a kid like mine that is very picky about the kinds of treats they'll eat (J only eats peppermint patties, dum-dum suckers, and rainbow Goldfish), have a few treats on hand so they can have something later. Stash them in a jacket pocket or have them ready at home.
See? Mostly common sense, but a little preparation and forethought can make a potential night of anxiety turn into a night of fun.
Happy Halloween!
Monday, October 13, 2014
Thursday, October 9, 2014
Don't Be An Ostrich
You know the myth about ostriches, right? They hide their heads in the sand. It's not true (they'd suffocate), but it's a good metaphor for something I encountered today.
I was surprised today by a fellow mom who was very strongly denying that there might be something "wrong" with her child. I don't feel that it's appropriate to share all the details here, but the impression I received was that she felt the school was bringing up some arbitrary educational standard that they felt her child wasn't meeting. There was a lot of conversation about how tests can't be trusted, how these children are too young to be able to diagnose any sort of condition, teachers just blindly follow orders or what they were taught, etc, etc.
I had to stop myself from getting immediately wound up over it, so I slowed down and read the conversation again, and again. The more I read, the more I remembered how I felt when my child's speech therapist called me into her office to discuss things she was seeing-he is preoccupied with the clock, he won't make a lot of eye contact-and to suggest that I have him evaluated for autism.
Now, when J was 2.5, I was getting nervous about his lack of speech, so I asked his pediatrician. Is he autistic? No, no, he's fine, the pediatrician said. Look, he plays peek-a-boo with me and smiles. An autistic child wouldn't do that. He just needs speech therapy. The nice lady who evaluated him for therapy didn't think anything was wrong beyond a speech delay. That delay was later re-labeled as a disorder, but still no one saw anything else. And I taught preschool aged children for over a decade, surely I would have been able to pick up on some hand flapping or something. I was certain that I knew better than this uppity therapist (I was pretty pissed and upset at the time). I had my education and professionals on my side!
After I calmed down (thankfully, I didn't actually tell his therapist she was uppity, or anything else), I looked at why I reacted that way. The answer was pretty obvious-I was scared. I was scared that this condition that Technohubby and I had revisited over and over, and had been reassured of every time, was back in our lives. I was terrified of autism, partially because it was my baby and I wanted him to be perfect, and partially because it sounded so freaking scary. So the hubby and I talked, and we decided to humor the uppity therapist (okay, I was still a little mad) and get an evaluation. We were going to rule it out. Long story short, ruling it out turned into confirming it. In the span of 6 months, we went from thinking we'd get laughed out of the exam room to navigating the waters of developmental disabilities funding. It was insane.
But the biggest changes in the entire experience were in myself and Technohubby. We went from pooh-poohing the idea to embracing it in the name of getting our boy all the help we could find. In that final meeting with the psychologist, I was almost eager to get the diagnosis, so we could get started. There's still a lot about autism that worries us. We know that there will be a lot of pitfalls and limitations as he gets older. He may need assistance to live independently. Hell, he may need to live with us for the rest of our lives. That realization made me kick myself for the times I'd whisper to his little toddler self that I wished he could be my little boy forever. I wasn't being that literal!
The whole point of my rambling post is this-parents, it may upset you to hear that your son or daughter might have a problem. It may scare you. You may think you know better than anyone else-I certainly did. But don't let those feelings keep you from checking it out. You owe it to your child/your family/yourself to look into it. Get that evaluation. Get a second opinion, or even a third. Don't be afraid to dig deeper if needed. A diagnosis doesn't change who your child is. It's just a label the doctors need to get you the help your child needs.
Your child is still going to be everything you love about them. Never lose sight of that.
I was surprised today by a fellow mom who was very strongly denying that there might be something "wrong" with her child. I don't feel that it's appropriate to share all the details here, but the impression I received was that she felt the school was bringing up some arbitrary educational standard that they felt her child wasn't meeting. There was a lot of conversation about how tests can't be trusted, how these children are too young to be able to diagnose any sort of condition, teachers just blindly follow orders or what they were taught, etc, etc.
I had to stop myself from getting immediately wound up over it, so I slowed down and read the conversation again, and again. The more I read, the more I remembered how I felt when my child's speech therapist called me into her office to discuss things she was seeing-he is preoccupied with the clock, he won't make a lot of eye contact-and to suggest that I have him evaluated for autism.
Now, when J was 2.5, I was getting nervous about his lack of speech, so I asked his pediatrician. Is he autistic? No, no, he's fine, the pediatrician said. Look, he plays peek-a-boo with me and smiles. An autistic child wouldn't do that. He just needs speech therapy. The nice lady who evaluated him for therapy didn't think anything was wrong beyond a speech delay. That delay was later re-labeled as a disorder, but still no one saw anything else. And I taught preschool aged children for over a decade, surely I would have been able to pick up on some hand flapping or something. I was certain that I knew better than this uppity therapist (I was pretty pissed and upset at the time). I had my education and professionals on my side!
After I calmed down (thankfully, I didn't actually tell his therapist she was uppity, or anything else), I looked at why I reacted that way. The answer was pretty obvious-I was scared. I was scared that this condition that Technohubby and I had revisited over and over, and had been reassured of every time, was back in our lives. I was terrified of autism, partially because it was my baby and I wanted him to be perfect, and partially because it sounded so freaking scary. So the hubby and I talked, and we decided to humor the uppity therapist (okay, I was still a little mad) and get an evaluation. We were going to rule it out. Long story short, ruling it out turned into confirming it. In the span of 6 months, we went from thinking we'd get laughed out of the exam room to navigating the waters of developmental disabilities funding. It was insane.
But the biggest changes in the entire experience were in myself and Technohubby. We went from pooh-poohing the idea to embracing it in the name of getting our boy all the help we could find. In that final meeting with the psychologist, I was almost eager to get the diagnosis, so we could get started. There's still a lot about autism that worries us. We know that there will be a lot of pitfalls and limitations as he gets older. He may need assistance to live independently. Hell, he may need to live with us for the rest of our lives. That realization made me kick myself for the times I'd whisper to his little toddler self that I wished he could be my little boy forever. I wasn't being that literal!
The whole point of my rambling post is this-parents, it may upset you to hear that your son or daughter might have a problem. It may scare you. You may think you know better than anyone else-I certainly did. But don't let those feelings keep you from checking it out. You owe it to your child/your family/yourself to look into it. Get that evaluation. Get a second opinion, or even a third. Don't be afraid to dig deeper if needed. A diagnosis doesn't change who your child is. It's just a label the doctors need to get you the help your child needs.
Your child is still going to be everything you love about them. Never lose sight of that.
Monday, September 29, 2014
Welcome to Little Boy Living Blue!
Hello! My name is Kerry, and I am many things-wife, daughter, sister, friend, geek-but I am also the mother to an autistic boy. This blog (the "living blue" part refers to autism spectrum disorder, often identified with the color blue) is going to be a way for me to chronicle the story of our lives. I have a little family of three-myself, my husband Technodad, and our 5 year old son, J. I'm using these names as a way of protecting their privacy. Technodad, by virtue of his career field, is aware of how fickle privacy is on the internet, and J is simply too young to understand and give consent. I'm sure I'll share the sunshine filled moments, but I also think it's important to share those other moments-you know the ones-because I believe that it gives a fuller picture of what autism can be like to live with. Maybe, by knowing about those times, it can help people to develop a better understanding of what can be done to help make the world more accessible for those on the spectrum.
I've been thinking for a long time about how different each person with autism can be, and how important it is that society can see those differences. Each child, each teen, each adult has a unique voice, opinions, and preferences, and those things often get lost or ignored by society. I'm a strong believer in self-advocacy for the autistic population (which is why you won't ever see me advertising for Autism Speaks, but that's another post for another day), and for giving those people a voice and platform. Ideally, as my son grows older, and as we become more involved in the autism community, I'd like to allow those people to use my blog as a soapbox of sorts. It'll also probably have rambling posts about my love/hate relationship with the gym, how Peter Capaldi's Doctor blew Matt Smith's out of the water, recipes for cheesecake, and whatever else blows my skirt up. Expect to see pictures of my kid being cute, links to nifty blogs, and the occasional mention of a product or service I really enjoy. I don't plan to seek out companies to review, so if I tell you all about a cool toy or helpful sensory item or whatnot, it's because I personally liked it.
So, assuming that I can actually follow through with my good intentions to blog, I hope you'll join me in our adventures in living blue!
I've been thinking for a long time about how different each person with autism can be, and how important it is that society can see those differences. Each child, each teen, each adult has a unique voice, opinions, and preferences, and those things often get lost or ignored by society. I'm a strong believer in self-advocacy for the autistic population (which is why you won't ever see me advertising for Autism Speaks, but that's another post for another day), and for giving those people a voice and platform. Ideally, as my son grows older, and as we become more involved in the autism community, I'd like to allow those people to use my blog as a soapbox of sorts. It'll also probably have rambling posts about my love/hate relationship with the gym, how Peter Capaldi's Doctor blew Matt Smith's out of the water, recipes for cheesecake, and whatever else blows my skirt up. Expect to see pictures of my kid being cute, links to nifty blogs, and the occasional mention of a product or service I really enjoy. I don't plan to seek out companies to review, so if I tell you all about a cool toy or helpful sensory item or whatnot, it's because I personally liked it.
So, assuming that I can actually follow through with my good intentions to blog, I hope you'll join me in our adventures in living blue!
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