Rachel L. MacAulay

5 Tips for Planning a Special Needs Birthday Party

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Birthday Cake

Planning a special needs birthday party is really not that much different than planning a birthday party for a child without special needs. For either child you should take into account all of their likes and dislikes, with the goal of having as many of their favorite things and as few (if any) of the things they don’t like, as possible. If you can, involve your child in the planning so that they can help you make decisions related to their big day.

Of course, don’t involve your child if you know that they’re going to ask for something totally unattainable. You know, like having Taylor Swift or a real dinosaur at their party. Or “tie-dyed” cupcakes that involve separating the batter into six different bowls, coloring them with different food dyes, layering each color into each individual form in the cupcake pan, and then baking them, all the while muttering that you’ll never, ever do it again—this may or may not have been me.

I’ve learned over the years to think about my kid’s personality and come up with a potential theme that I think they’ll like, and then run that by them. Some kids like choices and some don’t, so factor that into consideration too. You can easily make the choice for them if they’d prefer that. However, don’t make it a surprise if your child absolutely, positively panics in the face of surprises.

Here’s some more advice for throwing a party for your special needs child:

#1 – Keep the Party Small

If your child gets easily overwhelmed in crowds or has sensory issues such as aversion to a lot of noise, it’s best to keep the party small. Depending on the type of party you have, more children can also mean more waiting, as in waiting their turn to play a game, waiting in line to get food, etc. Most children, on or off the spectrum, hate waiting.

There’s no need to make your special needs birthday party into the social event of the year. Keep the guest list simple and invite only your child’s close friends and/or extended family members. I’m sure that if you ask your child who they want at their party, the number of names they mention could be counted on one hand—possibly two.

#2 – Ask Parents to Stay

Along with inviting just a handful of guests, ask parents to stay at the party if their children also have special needs. This will not only keep you from being outnumbered by kids, but will also prevent you from having to be in three places at once. Well, in theory at least.

Problems and meltdowns can happen in an instant with children, so it’s better for all involved if a parent is there to help out if their child gets upset or needs help. If a child decides that they’re no longer having fun at the party and want to go home right away, you can circumvent any potential tears or fits that would happen if they needed to wait for their parent to come by simply having them there already. Parents of kids with special needs usually won’t just drop them off at a party anyway, so this shouldn’t be a problem.

#3 – Think about Gifts

It may sound strange, but not all kids like presents. I know a little boy who doesn’t like change, including new things. Birthday presents are definitely new things!

If you have a child like this, and you think they’d do better not receiving birthday gifts, feel free to note that on the invitation to your child’s special needs birthday party. If your child merely gets anxious and would rather not open the gifts in front of other people, don’t make them. Instead, set aside time after the chaos of the party is over and the guests have gone home for them to have a quiet moment to look through the presents.

#4 – Monitor the Menu

Kid’s birthday parties are usually a time for serving up all kinds of foods that they’re not allowed to eat on a daily basis. Typically, these are sugary foods like cotton candy, cake, and all things chocolate. Kids who digest too much sugar tend to get hyperactive, and if they’re already hyperactive to begin with, you’re setting them up for behavior problems that they can’t control. Instead, consider party foods with low sugar contents, or only feature one food–such as birthday cake–with sugar in it. After all, it’s a party—you don’t want to kill all the fun, right?

#5 – Play to Their Strengths

If your child is highly energetic, do NOT plan a sit-down, make-quiet-crafts kind of party. Remember, the goal as a parent is to always try not to set your kid up for failure. Instead, a highly energetic kid will benefit from a highly energetic party—think about a sports party or keep everybody busy with lots of games. I’m talking about Musical Chairs 2.0, at the very least.

On the flip side, quiet, introspective kids will appreciate a low-intensity party. Ideas for this include tea parties and parties where it’s just the birthday child and a couple of friends out to the movies. My son loved a party where a local “reptile guy” came to the house and just quietly discussed and showed off his scaly brood.

Above all, birthdays are times for celebration, whether low-key or over-the-top. Do what will ultimately make your child happy while at the same time causing you the least stress.

Rachel L. MacAulay

I Have Autism, I Am Extraordinary

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Extraordinary

Scrolling through my Twitter feed with a cup of coffee firmly in hand is the usual way I start my mornings (a benefit of working from home). This morning I stopped short at a tweet from @HopeandHaven in answer to somebody else. The other person appears to have a wide spectrum of disorders, including autism, and obviously intended to make a positive sentiment about optimism and strength, but tagged autism under the umbrella term “Mental Illness.” HopeandHaven’s reply was simple and beautiful:

I agree with your sentiment but I don’t agree that autism is a mental illness. I am not ill. I am extraordinary.

“I am not ill. I am extraordinary.” Truly brave words. Have you looked at your autistic child and thought how extraordinary they are? Or have you been so focused and bogged down by the daily issues of raising a special needs child that you’ve never taken that step back to truly see them as they are?

Special needs or not, we are all extraordinary in our own way. We each have strengths and skills and good things to offer the world. It takes courage to not just recognize it in yourself but to declare it proudly and loudly to all that will listen. Because this world can be tough, and individuality and uniqueness are not always valued the way that they should be. But they should be, and you can help.

How? As with most things, by starting locally. As in, locally in your own household. By raising a child whose individuality is celebrated and not criticized. By recognizing your child’s successes and not giving too much weight to their failures. By using teachable moments and emphasizing learning experiences, but not overusing or overemphasizing them. Because everybody makes mistakes, and not just people with autism.

Autism is not an illness or a disease; your child is not a punishment or a curse. They are not ill; they are extraordinary.

Can you see that? Have you ever stood in wonder as your whiz kid performed complex equations in their head? Do you ever take for granted that your ultra-shy child can sit down at the piano and play any tune by heart? Does it matter that he can’t tie his shoes or that she only wants to wear the color blue? Are you so happy with the rules that life has made you follow that you want your own child restricted too?

Sure, society has guidelines and it’s our job as parents to prepare our children to live within them. To a point. It’s also our job as parents to teach our children to find happiness, isn’t it? So perhaps it’s time to leave our own ideas and expectations at the door and understand that their happiness will not come on our terms. Instead, their happiness is deeply rooted in the things they love to do and their ability to do them. Help clear their road of obstacles to reaching that happiness.

Make sure they know that they are not ill—they are extraordinary. And they can accomplish anything.

Rachel L. MacAulay

Parenting: The Hardest Thing You’ve Ever Done.

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Parenting

What’s the hardest thing you’ve ever done as a parent?

It’s not an easy question, is it? Your mind races back through so many snapshots; a fast-flipping Rolodex of moments and memories.

I remember my first (but far from only) hard parenting moment as if it was yesterday, and not already 13 years behind me. We’d just brought home our firstborn, a nearly ten-pound boy who emotionally enlarged my heart and physically exhausted my spirit. The staff at the hospital had intently focused on nursing and diapering to, I’d discover, the detriment of other little, important parenting things. Such as swaddling.

How hard is it to wrap a blanket around a newborn? you might ask. Well, let me tell you. I was close to freaking out when it was just the three of us at home–no nurses, no grandmoms–and I realized I had no idea how to wrap the baby and tuck those corners in so that the baby package stayed together. I laugh at it now–because, c’mon, anybody who has made a wonton, blintz or spanakopita can swaddle a baby–and know it’s a skill you never lose once you learn it. But there I was, an avid puzzle and game player, nearly brought to tears by one squirming baby and the blanket that just WOULDN’T STAY WRAPPED.

Of course, there have been many more difficult parenting moments in the ensuing years. Life has a way of throwing curve balls with no hints to warn of upcoming meltdowns and misadventures. Good intentions only get you so far, and usually that’s not nearly far enough. There are days when parenting is simply a minefield and you’re out there on your own, tiptoeing around, never sure if you’ll successfully avoid disaster.

Autism itself is a giant curve ball, but that doesn’t mean you can’t adjust your stance and master your swing. Parenting is compromise, revision, modification. I’ve learned to stop focusing on the home run—whether it’s the desire for a day out to go as perfectly as planned or a kid to have any interest in my favorite childhood book—and instead celebrate the times the bat simply connected with the ball. (Pardon the baseball imagery; themes crop up occasionally). After all, parenting is in the small things.

Of course, I miss those days when the worst I could do wrong was not correctly wrap a blanket, or warm a bottle, or answer a distress cry quickly enough. That 13 year-old is currently at sleep-away camp. It’s his second year and I’m the one who championed the experience. After all, children need space sometimes to discover who they are and who they can be. But I miss him. Daily. As we sit down around the kitchen table for dinner each night, there’s an empty space at the table that both tears at my heart and makes me thankful that it’s temporary. For now.

Because I know we likely have more years behind us than ahead of us in which either of our children will still be sitting around that kitchen table, telling us knock-knock jokes and testing out their newly acquired semi-raunchy vocabulary on an always-responsive and always-supportive audience. I also know that our protective control over their lives is slowly eroding as they grow and move on. At some future point, we’ll have to let them fly away, hoping to God that the world is kind and we’ve prepared them to adequately navigate through it.

The end game is always independence, is it not? The irony is that we are the ones who help them gather the feathers and teach them to make the wings that take them away from us. And that, my friend, is truly the hardest thing about parenting.

Rachel L. MacAulay

Autism: The More We Know

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Autism

The interesting thing about autism is that the more information the scientific and medical communities discover or uncover, the less impact the news seems to have for those who deal with autism on a day-to-day and really, minute-to-minute basis. The reality is that, for those of us who love and care for people—whether kids or adults—with autism, scientific understanding is secondary to our own personal understanding of how best to communicate and interact with the person standing in front of us. However, just because autism isn’t “curable” doesn’t mean that it isn’t manageable. In fact, even talking about finding a cure implies that autism is a disease, and that’s not what it is at all.

The term “autism” actually encompasses several “Autism Spectrum Disorders,” all of which are neurological in nature. These disorders are PDD-NOS (Pervasive Developmental Delay-Not Otherwise Specified), Autism (also called Autistic Disorder or Classic Autism) and Asperger Syndrome. Some authoritative sources also include Rett Syndrome and Childhood Disintegrative Disorder within the ASD classification. (Autism Science Foundation, What Is Autism)

All five of these disorders are linked to the brain, with issues affecting learning, communication, behavior and social skills. Many of them are marked by the loss of motor and language skills and difficulty in social interaction. Extreme examples of these disorders can include seizures, violent outbursts and self-injury.

Typically, developmental delays are apparent before the age of three, but that doesn’t mean children past that age aren’t diagnosed. There are adults who have been diagnosed on the spectrum in their later years. Although many people are afraid of a diagnosis of autism, it is necessary for figuring out what the next steps should be in addressing whatever issues your child is having. Be sure to go to a doctor or specialist for the testing and diagnosis.

Behaviors that can point to autism include:

  • Repeating other people’s words and phrases
  • Avoiding direct eye contact
  • Lack of empathy
  • Shying away from physical contact or simply not responding to it
  • Becoming overstimulated by loud noises and bright lights
  • Taking comfort in repetitive behavior
  • Developing motor skills “late” and/or very slowly as compared to others their age
  • Tics and/or hand flapping

You may observe all of these behaviors, or just one or two of them. When you’re dealing with autism the only thing you know for sure is that there are no hard and fast rules. We can use the word “typically” knowing that every person with autism is an individual and therefore, an individual story. As the saying goes: “If you know one person with autism, you know one person with autism.”

Anybody who deals with autism can quote two statistics from memory:

  • One in 68 children is diagnosed on the autism spectrum.
  • Boys are four times as likely as girls to be diagnosed.

Statistics speak to our need—and especially the scientific community’s need—to define something as-yet-undefinable. They can’t solve the puzzle, but they can tell you about some of the pieces. The best they can give you right now is a marker that points out the commonalities between people affected by an autistic disorder, so that you have a comparison point if you want or need it.

We’re all about the commonalities.

You’ll read all kinds of personal stories on the AutismAwareness.com site and, while every story is different, you’ll find the common threads of love, acceptance, gratitude and wonder. There are days of celebration and days of setbacks, days filled with laughter and days filled with tears. Yet, we’re all in this together, so nobody who’s dealing with autism should ever feel alone.

Alan Dunn

Autism. It Makes You Stronger.

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Father Son

Five years ago I never heard the word autism. Well, maybe I did, but it wasn’t part of my life.

In my world, autism was in the category of things other people had to deal with. I had my own challenges and anything which wasn’t a priority for me well, I just didn’t hear.

Then my son was diagnosed.

The world stopped.

Truth be told I lost something that day. I lost my spirit, my drive, my thirst for life.

The days became long. The nights even longer.

I became angry. My marriage suffered. My health suffered. My business suffered.

Many friendships were lost because I couldn’t talk.

Then something happened.

I was looking through some old papers one day and found this quote.

“A man becomes a father when he sees his child.”

I realized that moment I never saw my son, I saw his problems. From that moment forward my entire perspective of live changed. Not only is my son my best friend but he has taught me so much no one else ever could. This translates into life and choices I have made, especially over the last few years. This new perspective of opening my eyes more and realizing who is around, those who are truly around, helped me find a way to enjoy the best of life.

Life is too short. Embrace those you love and do what you want to do, on your own terms.

We all have challenges. The key is to open your eyes and see the magic.