Holiday Survival Tips for Families of Children with Special Needs

The holiday season is often filled with shopping, unique food, and special time spent with distant loved ones. For many families, this is no big deal — chaotic, but manageable. But for families of children with autism and/or special sensory needs (especially sensory sensitivities), these events may often be met with dread, stress, and major meltdowns.

children with special needs

Here are some tips for helping children with special needs survive the holidays:

1. Minimize kids’ time spent in stores and malls. It’s a jungle out there right now — stressed out crowds, lots of overwhelming sounds, weird smells, long lines, and more kid-tempting merchandise than any other time of year. If at all possible, avoid sensory overload and leave the kids at home or with a sitter while you do your shopping. You could devote one entire day to getting all your in-store stuff done. Or, better yet, do your shopping online. There’s still time to ship before the holiday and you can avoid the madness. If you’re looking for kiddie gift ideas, check out MamaOT’s list of Holiday Gift Ideas for babies, toddlers, and preschoolers. And if you’re not sure what to get for the child with special sensory needs, check out this great list of holiday gift ideas from AbbyPediatricOT.

2. Prep your kids. All the people and events involved in holiday festivities can be overwhelming for kids in general, but this is especially true for kids with autism/sensory difficulties. One of the best things you can do is prep them for what to expect. You can familiarize them with who they will see by going through photos with them online (yay, Facebook) or creating a special photo book (nothing fancy) so they can look through it with you in prep for the big day. You can make your own version of a Social Story by helping your child put together a basic book (pieces of paper stapled together) with stick figures and descriptions of what will or may happen in different aspects of the upcoming festivities. If you’ll be traveling a long distance, you can prep them for what will be involved with transportation and include that in your social story (going to the gas station, standing in line, security checks, special seat belts, cabin pressure, loud railroad noises, etc.). The more you can prep them for what’s to come, the better.

3. Prep your family. If you’ll be spending time with family and loved ones who may not be in the loop with your child’s needs, you may want to fill them in a bit so they know what to expect and won’t be offended if little Johnny cries when Aunt Marge tries to give him a big hug and kiss or sweet Susie won’t eat Grandma’s homemade ham. This can be a touchy subject for some families, especially if they don’t feel comfortable letting others know their young child has a diagnosis yet (such as autism). Only share as much as you are comfortable. All you need to say is that Johnny is more comfortable with high fives than hugs and kisses (which you know is due to tactile sensitivities), or Susie is still learning how to try new foods (which you know is due to oral sensitivities), and leave it at that. But please make sure you communicate something so your sweet family gathering doesn’t turn into a day of raised eyebrows and hurt feelings.

4. Maintain routines. Many children with autism/sensory challenges have major difficulties when it comes to change, especially changes in routine, diet, or sleep schedule. Their bodies and brains often don’t adapt as well, and this may result in over-arousal, disorganized behavior, increased sensory seeking/avoiding behaviors, and/or meltdowns. If your child is one who heavily relies on routines to maintain their sense of organization and emotional regulation, then you know what I mean. So amidst all the school plays, errands, and travels, try your very best to keep your most critical routines as much the same as possible. If your child follows a special sensory diet created by an occupational therapist, then make sure he or she is engaging in those special sensory activities as regularly as possible in order to maintain their level of physical and emotional regulation.

5. Maintain diet. I mentioned diet in the previous point, but it’s so important that I’m giving it its own section. Food fuels our bodies and our brains. Some bodies and brains can continue to function in an optimal (if not slightly hyper or lethargic) level despite temporary changes in diet such as increased sugar, fat, red food dyes, wheat, or carbonation. Other bodies, however, get totally thrown off kilter when holiday foods are introduced, and it can put kids with sensory challenges into a whole new level of struggle. You know your child and what his or her tolerance is to changes in diet, so it’s ultimately up to you on how to navigate the holiday offerings of cookies, fudge, marshmallows, candy canes, etc. But just be aware that holiday foods have the potential to greatly influence and alter a child’s ability to function in their day-to-day, especially if they have special sensory or dietary needs.

6. Bring your own food. If you know food will be an issue for your child, consider providing food you know he or she will eat. Loud, stressful holiday family gatherings are NOT the time to try and introduce new foods to your selective eater. This is why it’s important to at least minimally prep your family in advance of mealtime, so they won’t make a big fuss about why your child isn’t eating what everyone else is eating. If they’re eating chicken nuggets while everyone else is enjoying prime rib and mashed potatoes with gravy, that’s fine! Again, you know your child best, so do what you think will work. But please don’t stress about how they will respond to all those new foods. They don’t have to eat them.

7. Make a plan for “escape”. What are you going to do if and when your child has had enough sensory input for one day and is teetering on the point of meltdown (or has already zoomed past that point into total meltdown)? If you know where you will be on the big day, try to create a “safe space” where your child can retreat before he or she gets to the point of explosion. It could be a spare bedroom with video games/movies, a small tent or fort with pillows/blankets/preferred toys, or even the car or garage. Or on the opposite end of the spectrum, what are you going to do if your sensory seeker has been cooped up in a car or airplane and is now expected to sit still as a guest in someone’s house all day. Not gonna happen! Try to find ways to give your seeker opportunities for vestibular input (spinning, swinging), proprioception/heavy work (running, crashing, carrying heavy things), and/or tactile experiences (play dough, fidget toys) before they end up in trouble. Like I said, the more communication you can have with family in advance, the better chance you have at successfully navigating your time together.

8. Have a support team. Enlist at least one other person or family to be on your “team” during your gathering. This could simply be someone who makes sure the “safe space” is all ready to go, or it could be an adult or older kid whom your child trusts and is able to hang out with while you try to eat and socialize. Whatever you do, don’t do it alone!

There are so many aspects of the holiday season that can be difficult for families of children with special needs that I couldn’t possibly cover all of them in one post. So please visit these other helpful links on similar topics if you are looking for more information:

Happy holidays to you and your family!

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Get Ready for Info on Sensory Processing Disorder (SPD)

This weekend I had the distinct privilege of attending the 15th annual international symposium on Sensory Processing Disorder (SPD). It was held in my hometown of Sacramento, CA, and I was honored to be in the presence of some of the greatest leaders in the field of SPD research and intervention.

In a nutshell, Sensory Processing Disorder (SPD) occurs when the brain misinterprets sensory information (like touch, sound, smell, movement) and either over-responds, under-responds, or excessively craves it to the extent that it interferes with a person’s ability to function in his or her daily life. These difficulties with sensory processing also frequently contribute to motor-based problems that end up delaying the development of age-appropriate fine motor skills (small muscle groups: hands/fingers) and gross motor skills (large muscle groups: legs, shoulders, trunk).

sensory processing disorderThe most well-known speaker at this weekend’s conference was Dr. Lucy Jane Miller, an amazing woman who has devoted her life to helping children with issues related to sensory processing. She is the author of Sensational Kids: Hope and help for children with sensory processing disorder and No Longer A SECRET: Unique common sense strategies for children with sensory or motor challenges, and she has co-authored many other books and prestigious research articles on the topic of SPD. Dr. Miller is also the leader of the STAR (Sensory Therapy and Research) Center in Denver, Colorado, which is a unique place for children and their families to engage in intensive sensory-based treatment and education in order to help them more successfully participate in daily activities (such as self-care, eating, playing, and participating socially) and increase their quality of life.

As anticipated, this conference built upon my current knowledge about and experience with sensory processing disorder. Ten lectures over the course of two eight-hour days? Yeah, I learned A LOT!

And I bet you’d like to know some of what I learned?

Well, you’re in luck.

This conference, of course, has reinvigorated my passion for everything sensory, and over the course of the next several weeks, I will be sharing some juicy tidbits that I hope you will find helpful for yourself, your own children, or other children you work with. While I won’t be able to write blog posts about every single thing I learned, I will be sharing many helpful sound bytes throughout the weeks via Twitter and Facebook. So make sure you’re following me on Twitter (@mamaotblog) and you’ve become a fan of MamaOT on Facebook (http://facebook.com/mamaotblog) so you don’t miss out on some really great info.

Topics I look forward to sharing with you are (in no particular order): 
• Basics of sensory processing and SPD
• ”Sensory Diet” vs. “Sensory Lifestyle”
• SPD and Autism
• What happens in the brains of kids with SPD as it relates to sensory processing, why this causes them to behave the way they do, and what we can do about it
• Sensory-inclusive playgrounds for kids with SPD and autism
• Emotional regulation as it relates to sensory processing
• ”Picky eating” and sensory sensitivity in kids with SPD

I hope you’re as excited as I am. And, hey, if you’re not interested in reading about SPD stuff, don’t worry, I’ll still be blogging about other topics over the next several weeks as well. I just wanted to give you a heads up so could prepare yourself (because that’s what we pediatric OTs do, right?).

Looking forward to sharing with you!

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Foods to help kids focus in school

It’s that time of year again. School is about to begin (or already has for some of you) and the kids are (about to be) out of the house for much of the day…Yippee! said all the parents. This means it’s time to get back into the habit of packing lunches (Boo!) and sending kids off to school with a load of goodies to fill their bellies. But did you know you’re not just feeding kids’ tummies when you give them food? You’re feeding their brains and nervous systems too, and there are actually some types of foods that can be used to help increase kids’ attention and focus during the school day.

Vegetable Medley: 26/09/06

As you pack your child’s lunch, just remember to F.O.C.U.S.

F: Fiber and whole grains both help slow down the speed at which sugar enters the bloodstream. So when kids eat fiber and whole grains as part of a healthy snack and/or lunch, they are less likely to experience a spike in blood sugar levels, and this helps them avoid a “crash” in energy later on. More stable energy levels equal better potential for focus. Some kid-friendly foods filled with fiber and/or whole grains include plain popcorn, beans, avocado, hummus, almonds, bananas, whole wheat pasta, quinoa, brown rice, edamame, whole wheat bread (different than “multi-grain”, which is not whole grain), fruit with skin (like pears and apples), berries (especially blackberries), and oatmeal-based products (but watch out for the added sugar in things like oatmeal cookies that will cause that crash later on!)

O: Omega-3 fatty acids contribute to brain function and cognitive behavior and can be found in kid-friendly foods such as avocado, tuna, tilapia fish sticks, salmon, extra virgin olive oil, almonds, walnuts, pumpkin seeds, and macadamia nuts.

C: Crunchy and chewy foods are one of the best kept secrets when it comes to foods that help kids focus. Though it’s common knowledge among pediatric occupational therapists, not a lot of people know about it for some reason, so I’m telling you now! Foods that are crunchy or chewy can provide a lot of “heavy” input to the jaw because the muscles really have to work to break them down, and this particular type of sensory input helps increase focus and attention. Obviously you don’t want to go overboard and send your child to school with a jawbreaker candy or tootsie pop everyday, so try foods like crackers, pretzels/pretzel rods, peanut butter, cheese, nuts, granola bars, corn nuts, carrots, celery, broccoli, sliced bell peppers, snap peas, apples, fruit leather, or dry cereal (such as granola, Cheerios, or Chex/Chex Mix).

U: Giving kids unprocessed foods will help reduce the amount of trans fats and high fructose corn syrup they eat during the day, which means they will be more likely to eat fresh foods that will keep their energy at a balanced level and help them maintain their focus. Remember, “processed foods” are foods that have been altered from their original state, and they are EVERYWHERE. They often contain ingredients such as white flour, added sugar, added salt, partially hydrogenated oils (the trans fats), and high fructose corn syrup. Think of it this way: if a food can sit on a shelf for weeks or months on end without going bad, then it’s most likely processed. Conversely, unprocessed foods will “go bad” more quickly but will provide your child with healthier fuel to help their body and brain stay energized and focused during the school day. I know it seems impossible to feed a child food that isn’t processed (hello, mac ‘n cheese!), so be realistic with what you know your child will eat and go from there. Every little bit counts.

S: Food and drinks that require sucking can really help kids get focused and increase their attention. This is another trick pediatric occupational therapists keep in their back pocket that not too many people know about. Sucking through a straw or straw-like container can be a very “focusing” activity, so if you send kids to school with suckable fruit pouches and a pop-top water bottle or straw for their milk (how about a fun crazy straw?), you will be setting them up for school success!

BONUS FOOD: Protein. I couldn’t figure out how to fit protein into my tidy little acronym, so it’s just gonna have to hang out here by itself. But just because it didn’t make it into the top five doesn’t mean it’s not important! Protein contributes to stable energy levels (which contributes to focus and attention), so be sure to include kid-friendly protein in your child’s lunch with foods like hard boiled eggs, beans, nuts, quinoa, meat (the less processed the better), hummus, cheese, milk, yogurt (easy on the sugar!), or avocado/guacamole.

So there you have it. Don’t feel like you have to try all these foods at once or that you have to strictly follow these ideas. Find what works for your child and allow him or her to help you come up with ideas for new combinations of “focus foods” (like apples and cheese or peanut butter-filled pretzels). When you pack your child’s lunch in the morning (or the night before, if you’re really ambitious), do a quick scan of their lunchbox and ask yourself: 

Am I helping my child F.O.C.U.S.?

. . . . .

If you feel your child has significant difficulties focusing in school or you have specific nutritional questions about any of the above-listed foods, be sure to bring it up to your child’s pediatrician. He or she will (hopefully) be your best resource for addressing your child’s specific needs and pointing you in the right direction. And if your child already sees an occupational therapist, check with her or him for specific recommendations regarding your child’s particular sensory needs. This post is not an exhaustive list of foods because there are even more food- and drink-related ways to help kids stay alert and attentive during class, if you can believe it! Another post for another day, I suppose. But I hope this is a good start.

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10 tips to prepare parents for their child’s in-home evaluation

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Last week I found myself in a unique situation. A very unique situation. I — a pediatric occupational therapist who enters families’ homes on a daily basis to conduct developmental evaluations and provide therapy for their little ones — found myself sitting in my apartment waiting for an occupational therapist to come evaluate my own little one. Without going into too much detail, we have had feeding and sensory issues which have caused quite the ruckus in our household over the past 10 months or so. With my husband’s blessing, I contacted our local Regional Center and asked them to come out and take a look at our non-bottle-drinking, non-sleeping, non-self-soothing, head-butting bundle of joy to see if they could give us any pointers.

I couldn’t believe how nervous I was in the minutes before the therapists’ arrival (yes, they sent TWO therapists to check in on us…talk about feeling like you’re under a microscope!). If I — a therapist who does this for a living — was feeling this way (and I even knew exactly how the entire process would go), I can’t imagine how it must feel for parents who don’t know anything about the system or the process and simply want to know what’s going on with their child.

As we await the results of the evaluation, I wanted to share with you some tips from the perspective of a pediatric therapist for how to prepare for and participate in an in-home developmental evaluation, should you ever find yourself in such a position.

Here are five things to avoid:

– Don’t go out of your way to clean your house. If you’ve been meaning to clean your house anyway and the fact that strangers are coming over provides some incentive for you to finally get it done, then by all means, clean away. But if you’re having your child evaluated, chances are your day is already stressful enough. Don’t complicate it by rushing around to put away toys, wash the dishes, or mop the floor. We’re coming to evaluate your child, not your homemaking skills.

– Don’t worry about what your bathroom looks like. The person coming to evaluate your child more than likely won’t ask to use it. I know I don’t. And if they do, they will do it as quickly as possible and will certainly not be snooping through your medicine cabinet. Just make sure there’s some soap and a towel in there so we can come back out with clean hands.

– Don’t worry about making a place for us to sit. Unless other arrangements have been made, we will spend the majority of the evaluation playing with your child, and that means we’ll be down on the floor with them. We’re used to it. It’s what we do.

– Don’t change your parenting behavior just because a therapist is in your house. Talk and interact with your child in the same way you would if we weren’t there. We want to get a good look at how things usually go in your child’s life, not how you wish they would go. If you normally use baby signs while talking to them, then use baby signs. If you usually speak to them in more than one language, then speak to them in those languages. If you typically give them a time out when they misbehave, then enforce the time out if they end up earning one during the evaluation. Don’t get nervous about your parenting style just because there are strangers in your house. Again, we are here to evaluate your child, not your parenting skills.

– Don’t get defensive. It is our job to scrutinize every little thing we see your child do and be hyper-analytical about it. It’s what we’re trained to do. And it’s also what the assessment calls for. We are required to obtain developmental levels for all major areas of development: cognitive, language comprehension, language expression, gross motor, fine motor, social emotional, self-help, and maybe sensory processing (depending on your concerns). So even if you are only concerned about your child’s language skills, we are still required to complete a full developmental evaluation. It’s the law. It also gives us a better sense of why they may be struggling in the way they do so we can create the best possible plan and recommendations for them. Additionally, we will not only test skills at your child’s level, but also above their level so we can get a feel for where they’re at and what would be appropriately challenging goals to set for them. So please don’t get defensive or upset about the questions we ask or the difficult tasks we ask your child to complete. We’re here to help.

And here are five things to be sure to do:

– Write down bullet points of your main concerns before the evaluation. Include how long you’ve been concerned, some examples of how these concerns have manifested in every day life, and any questions you have related to these concerns. Unless I’m a total weirdo, I’m pretty sure you will feel frazzled and maybe even overwhelmed during your child’s evaluation (I sure did). It’s your baby — your precious baby who means the world to you — that they’re scrutinizing, and you’ll find yourself stumbling over your words as you look over at your child and try to explain what the problem is. So know your main concerns and be able to clearly state what they are.

– Try to schedule around your child’s naptime to the best of your ability. I know firsthand how inconsistent naps can be but, please, do your best to schedule around them. We are coming specifically to interact with your child and it’s hard to get an accurate assessment if they are asleep the whole time. Do your best to gauge when they’ll be napping on the day of the evaluation and if it looks like there may be a collision of schedules, try to call the evaluator just to give them a heads up. That will give them a chance to prepare themselves accordingly and maybe switch around some things in their evaluation or even in their schedule for the day.

– Start a folder so you can keep track of all the paperwork and handouts you will receive as part of the evaluation (and possibly intervention) process. This will make life so much easier for you and it will keep your brain organized as you meet with an assortment of people whose names and titles will escape you as soon as they exit your front door. You can get a basic folder from the grocery store for less than a quarter and, since we all go to some sort of grocery store, there’s really no excuse. On the day of my first meeting with our service coordinator, I had absolutely no idea where I had put the paperwork she had mailed to me and specifically asked me to make sure I had filled out for her when she arrived. Mommy brain to the max. I searched and searched and panicked and rushed around the apartment and then, 15 minutes before her arrival, I found it sitting neatly in a very logical spot over by the mail. Doh! Don’t make the same mistake as I did. Get a folder. Label it. Put it somewhere you’ll remember. You’ll be glad you did.

– Ask the therapist what activities you can do with your child in the time between the evaluation and when therapy services begin. It often takes several weeks between having an evaluation completed and actually beginning therapy. In addition to their full day of treating clients, the therapist has to score your child’s assessment, write the report, submit it to the appropriate parties, and then await authorization for services. As a parent, you’ve probably waited long enough before seeking out services, so the last thing you want to do is wait even longer to get started in helping your child. So ask the evaluating therapist if they have any suggestions for what you can do with your child while you wait for therapy to begin. They will be happy to provide some simple suggestions that will get you rolling and, hopefully, relieve some of your anxiety about your child’s progress.

– Remember that the therapists are on your side. We are here to help. We went through many years of formal education and training and have likely submerged ourselves in an unimaginable amount of debt in order to help people just like yourself and your child. It is our pleasure to work with you, and we want nothing more than to see your child succeed. We are on your side.

I hope this list is helpful and, hey, if you know of someone who could use this info, please pass it along!

 

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Tips for early identification of autism

English: Subject: Quinn, an ~18 month old boy ...

English: Subject: Quinn, an ~18 month old boy with autism, obsessively stacking cans. Date: Late 2002. Place: Walnut Creek, California. Photographer: Andwhatsnext. Scanned photograph. Credit: Copyright (c) 2003 by Nancy J Price (aka Mom). This is an edited version of Image:Autism-stacking-cans.jpg. (Photo credit: Wikipedia)

We’ve probably all heard of autism by now. It’s a word that frightens and confuses many. The latest statistics show 1 in 88 children are diagnosed with autism, with a 1 in 54 rate for boys.

In case you’re not well-versed, autism is a genetically-linked, brain-based, developmental disorder that manifests in the early years of a child’s life, prior to age 3. It involves difficulties with communication, social interaction, and repetitive or stereotyped behaviors (such as rocking back and forth or insisting on lining up objects). Many children with autism also experience difficulties with sensory processing. This means they may demonstrate either an over- or under-reactivity to certain kinds of sensory input (like touch, sound, or movement), or they may demonstrate sensory seeking behaviors. Many present with a mix of all 3.

The cause of autism is unknown, and theories abound. Treatment options vary, ranging from those backed by scientific evidence to others informed by individual experience or media hype.

Regardless of your opinion on the cause or course of autism, one thing is for sure: early identification is crucial. The earlier a child can be identified as “at risk” or diagnosed with autism, the sooner he or she can begin early intervention treatments such as ABA (applied behavior analysis…”behavioral therapy”), occupational, speech, or physical therapy. When begun early enough (by age 3 or earlier), these treatments are often effective in helping children learn skills necessary to enhance their development, improve independence in daily function and, sometimes, lose their diagnosis by the time they enter kindergarten.

Early identification and intervention are key.

As an occupational therapist working in an early intervention setting, this topic is near and dear to my heart. Although I am a professional who works with these precious kiddos on a daily basis, I want parents and caregivers to know you don’t have to be an expert in the field of child development to identify a child who may be at risk for autism.

Below are three things to keep in mind to assist with the early identification of autism:

1. Head lag at 6 months of age. This means that, when the baby is pulled up from a laying-down position on her back to a sitting position, her head dangles back and she has a very hard time bringing her head forward to line up with her body. Babies typically develop the ability to keep their head in line with their body during a pull-to-sit test by 4 months of age. A very recent study has shown head lag at 6 months of age to be a significant red flag for autism. In this study, 90% of the children who were diagnosed with autism exhibited head lag as 6-month-old babies. Let me be clear: this does NOT mean a baby will for sure develop autism if she demonstrates head lag at 6 months. But it does mean she is at a higher risk. Watch the clip below to see what head lag looks like and click here to see what typical head/neck motor control looks like in the pull-to-sit test.

2. Lack of pointing at people and objects by 1 year of age. When a child points to an object (say, the big garbage truck coming toward the house or the picture on the wall), he is engaging in something called “joint attention”. This is important for the development of communication skills, and kids with autism often struggle with it. Prior to being able to point at objects, babies develop the ability to look where someone else is pointing. You’ll see them start to practice this skill by looking at your finger and then following the imaginary line it makes over to the object you’re pointing at. This skill is often expected to emerge by 9 months of age. It is a precursor to pointing and is also a big contributor to the development of joint attention.

3. See a developmental pediatrician. Unlike regular kids’ doctors, developmental pediatricians are trained to identify, diagnose, and recommend therapy services for children with a variety of developmental and behavioral challenges, including autism. Those who hold the official title of “developmental-behavioral pediatrician” can be few and far between, but you can search based on zip code by clicking here. If you can’t find any in your area, you can search for a regular pediatrician who has clinical experience working with children and families with autism. Still no luck? If you live in the state of California (the state whose system I am currently a part of), you can contact your local Regional Center directly to request a FREE developmental evaluation. Click here for a directory of the 21 Regional Centers throughout California.

As you can see, this basic 3-point list is not exhaustive. That’s because my goal is to inform you, not overwhelm you. For a more extensive list of the early signs of autism, click here or here.

The earlier these kiddos are identified, the sooner they can receive services, and the better chance they have at developing the skills they need to reach their potential…and isn’t that what we want for every child? Let’s work together to make sure that happens!

For further reading about autism, please visit the following sites:
1. www.autismsciencefoundation.org
2. www.autismspeaks.org
3. www.firstsigns.org

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