A Letter to My Son's Epilepsy Specialist

© Antonio Guillem | Dreamstime.com

Dear Dr. _____,

As you know, my son has had epilepsy for the past 2.5 years. And as I told you upon meeting you yesterday, he has never had a neurologist. You are his first.

We just moved back to the U.S. from the Netherlands, where his epilepsy was overseen by his pediatrician—a neonatologist by training, so she knew a lot about the growth and development of children born prematurely, as my son was, and a lot about the developing brain. But she wasn't an epilepsy specialist, and for various reasons, I had difficulty getting one for my son in the Netherlands. 

So, I relied on the advice of his pediatrician. 

She monitored the safety and level of my son's twice-daily epilepsy medication and raised the dosage as needed, but my son continued to have seizures once every few months. She considered these so-called break-through seizures to be normal and acceptable. Not having a more specialized doctor to turn to, I believed her.

But yesterday, you told me that you didn't agree. 

You said that the goal for my son should be zero seizures and that there are various ways we could try to achieve that goal.

You advised me to start by incrementally increasing the dosage of his current medication over the course of 6 weeks, and you gave me a schedule for exactly how to do this.

You ordered an EEG because that would help you pinpoint the type(s) of seizures my son has been having. You said that depending on the type of seizures, certain medications may be better suited for him than others and we may need to switch him to a different one.

You said to schedule a follow-up visit for 6 months from now but if my son has any seizures in the meantime, to come back sooner because something needs to change.

Thank you for giving me hope of a seizure-free life for my family. My son's seizures, though infrequent, have been challenging and scary: They usually happen at night after my son goes to sleep, they never stop on their own, and they almost always land him in the emergency department.

We can't let him sleep alone. 

We must be extra vigilant when we travel. For example, we must always bring his emergency anti-seizure medication with us, even on walks, and we travel only to places with decent hospitals nearby. 

Flying across the Atlantic Ocean has become somewhat terrifying. What if he has a seizure on the flight? What if his emergency medication doesn't stop it? What if we can't make a quick landing for emergency medical care because there's nowhere to land? Unless his seizure risk significantly decreases, we're unlikely to travel back to Europe, where we have family and friends.

These are far from the worst things imaginable, but they have affected our quality of life.

Thank you for believing that we can do better.

Sincerely,

A Grateful Mom

14 Fun Things To Do With Your Child With Special Needs This Summer

© Vladimir Fomin | Dreamstime.com

If you're like me and wondering how you're going to occupy your child with special needs this summer, then read further for some ideas I've come up with:

1. Go to the library together

Check your local public library's website to see what programs are available. Some libraries have programs specifically for kids with special needs, such as Sensory Storytime. You could also take your child to the children's room in the library, where you could read and/or play with toys and games together.

my son playing at a library

2. Go to the zoo together

Check to see what programs are available on a given day. Some zoos have animal feeding times open to the public or short educational sessions where you can learn about specific animals. If your child is really into animals, consider getting an annual zoo membership so that you can go as many times as you want for a set yearly fee.

3. Go to a science museum or children's museum together 

Science museums are great places for kids to do hands-on science and technology activities such as turning knobs to see gears turn, creating marble runs, and experimenting with bubbles. Children's museums often have play scenes set up that encourage your child to, for example, have a pretend tea party, or pretend to mow a lawn or drive a train. Museums are a great way to give your child new sensory experiences and opportunities to learn more about the world around them. Check out your local science or children's museum's website for any special programs available this summer.

my son and me in a giant bubble at the NEMO Science Museum in Amsterdam

4. Take your child to adaptive swim lessons

One-on-one adaptive swim lessons can be a great option for kids who need more support and supervision than a typical swim class might offer. Check your local YMCA to see what's available.

5. Attend music classes or a music therapy group with your child

My 4-year-old son, who has cerebral palsy, has attended a couple of music therapy groups for kids with special needs. Both have been small groups of 4-8 kids and have been interactive, supportive groups where the kids could play different (mostly percussion) instruments and imitate the movements of instructors in rhythm with music. The music therapy group my son currently attends encourages development of language and social skills through musical games and activities. Look online to see what's available in your area.

6. Attend hippotherapy sessions 

Hippotherapy involves riding a horse to improve balance, coordination, and strength. During a hippotherapy session, a trained physical, occupational, or speech-language therapist purposefully manipulates a horse's movement "to engage sensory, neuromotor, and cognitive systems to achieve functional outcomes," according to the American Hippotherapy Association's website.

7. Take your child to an accessible playground

...or to a regular, age-appropriate playground, depending on his/her needs. If your child needs a relatively quiet play environment, consider going on an overcast day or another time when you know it will be less crowded.

8. Take your child to an indoor playground/kids' gym

These often have slides, ball or "cheese" pits, bouncy houses, trampolines, and climbing towers—all sorts of fun stuff for kids to play on or in. They can be a great place to go when it's raining or when you need a change of scenery, and they can be a great way for your child to further develop his/her gross motor skills.

ball pit!

In a similar vein, you could consider enrolling your child in classes at your local kids' gym. I've heard good things about Little Gym from another parent of a child with special needs.

9. Take your child to local special events, such as family-friendly concerts or movies on the lawn

Check your municipality's website to find out what special events are available in your area.

10. Enroll your child in local recreational activities

Check your municipality's website: Does it have a recreation division? If so, are there any activities listed, such as sports clubs or educational activities? Some municipalities have activities specifically geared toward kids with special needs.

11. Do art and science projects together using crates from KiwiCo

This post isn't sponsored, and I'm not affiliated with KiwiCo in any way; I just think their crates look super-fun and I'm eager to try them with my own kid. KiwiCo has several different lines of crates aimed at different age groups: the Cricket (Ages 0-2), Koala (Ages 3-4), Kiwi (Ages 5-8), Doodle (Ages 9-16+), and Tinker (Ages 9-16+) crates. Each crate comes with creative materials for at least 1 activity; a parent guide or, for older kids, kid-friendly instructions; a kids' magazine; and online tutorials. They can be purchased individually at the KiwiCo online store or as one of several subscription packages. They look like a fun way to encourage development of your child's fine motor and cognitive skills.

12. Go to a beach

Do you live near a lake or ocean, or are you up for a day trip? You could go to a beach and wade in the water, ride the waves in an inflatable boat or intertube, or play in the sand. There are all sorts of sensory experiences to be had at the beach: hearing the waves breaking, feeling the waves lapping against your feet, feeling the motion of the water when you're in an inflatable boat or intertube, feeling the sand between your toes or in your hands.

If your kid has an aversion to touching sand, as mine once did, you could encourage him/her to play with the sand using tools such as shovels and rakes, or by running a toy truck over the sand. My son's therapy team at school encouraged him to play with sand in these ways, and he gradually became less and less aversive. He now enjoys playing in the sand.

my son and husband on the North Sea

13. Play outside with a sand or water table

Experience some of the benefits of the beach in your own backyard—or, for those of us who live in apartments and condos, a balcony or outdoor common area.

14. Have a play date with a classmate, neighbor, or other friend

You could invite your child's classmate, a neighbor, or other friend over to your home for a play date (with his/her parents present, if you'd prefer), or you could meet up in a public place such as a park or playground.

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I hope this list has given you some good ideas for things to do this summer with your child with special needs. If you have any additional ideas, I'd love to hear them in the comments section below! Thanks so much for reading!

10 Ways to Save Time and Energy as a Special-Needs Parent

© Anyaberkut | Dreamstime.com

Parenting a child with special needs can be challenging and exhausting at times, with all the doctor and therapy appointments, worries about your child's development, and extra assistance you need to give to your child. As the mom of a 4-year-old son with cerebral palsy, I'd like to share with you 10 ways you can save time and energy as a parent of a child with special needs so that you have more time and energy for the things that matter most.

1.) Plan meals in advance

Until recently, I didn't know how to do this—or at least, I didn't know how to do it well. I kept hearing that meal planning can save you time and money, so a few weeks ago, I watched a YouTube video about meal planning to learn how to do it better.

Since watching that video, I've been planning meals once a week, usually on Monday. I write down the days of the week and a dinner plan next to each day—usually a dinner that I know my family enjoys, but about once every week or two, I'll add a new recipe. I also write things like "leftovers" and "pizza delivery" because some days, you just need to have a pizza delivered.

(Something valuable I learned from the video is that you don't actually have to stick to the schedule. You could swap the Wednesday and Thursday meals, for example.)

Right after creating the meal plan for the week, I make a grocery list of ingredients I'll need to make those meals, plus foods for breakfast, lunch, and snacks throughout the week. While doing this, I check my pantry and fridge to make sure I'm not adding items to my list that I already have.

I'm loving that I no longer have to think so much about what's for dinner tonight or whether I have all the ingredients. I (usually) know what's for dinner, and I know I have the ingredients.

2.) Get groceries delivered to your home

My family recently started using Amazon.com's grocery delivery service, AmazonFresh, and we're loving it. (This blog post is not sponsored, by the way.) The food prices are comparable to those in our local grocery store, and since we're Amazon Prime members, delivery is free. 

When I order the groceries, I can reserve a 2-hour delivery time slot and select whether I want the groceries dropped off at my door or handed to me. If I order early enough in the day, I can often get same-day delivery. The food always arrives well-organized, with items that need to be refrigerated or frozen grouped together with ice packs or dry ice packs.

AmazonFresh does involve a couple of extra expenses versus going to a grocery store: a subscription fee of $14.99/month, plus a tip for the driver, or about 10% of the grocery bill. For me, these extra expenses are worth it: I don't have to go to the grocery store as often, which means fewer potentially challenging grocery store trips with my child.

I mention AmazonFresh because it's what I'm personally familiar with, but there are certainly other grocery delivery services out there that may be worthwhile for you to check out.

3.) Outsource chores when possible 

I keep joking with my husband that I want to get a pet monkey that can do our dishes. I don't think that's going to happen any time soon—doing the dishes is something most of us just have to do ourselves [sigh]—but there may be other chores that you don't enjoy and can afford to outsource, such as lawn care, snow removal, organizing closets, ironing clothes, or cleaning bathrooms.

I've looked into cleaning services in the past, and I was pleasantly surprised to discover that they can be quite flexible. You can often have a cleaner come once a week, every two weeks, once a month, or as needed, depending on your needs and budget. You can specify which area(s) of your home you want cleaned and, sometimes, what type of cleaning products they'll use (e.g., green products).

To reduce costs, you could consider hiring a local teenager or college student to do certain chores for you.

4.) Declutter your home

This will take time and energy upfront but will save you time and energy in the long run. Physical clutter can obviously make it harder for you to find things when you need to find them—i.e., waste your time. It can also create unnecessary mental clutter. 

A year or two ago, I learned about the KonMari Method^TM, which is a method of tidying up that involves gathering everything from your home from a single category, such as clothes or books—allowing you to see the sheer volume of things that you have in that category—and then getting rid of anything that doesn't spark joy.

I read a book about the KonMari Method^TM, The Life-Changing Magic of Tidying Up by Marie Kondo, and it inspired me to declutter my own home. I've gotten rid of lots of old papers, clothes, and books that no longer served a purpose in my life. I always feel lighter after a good decluttering session.

Decluttering doesn't have to be overwhelming. You could start with the category that is easiest for you, or you could forego the KonMari Method^TM altogether and just focus on a small area of your home, such as the cabinet under your bathroom sink or the counters in your kitchen.

5.) Take breaks from your child

Taking breaks from your child is a good idea for all parents, but I think this is especially true for parents of a child or children with special needs. My son needs more physical assistance than his typically developing peers with everyday things like eating, drinking, and going up and down stairs. This assistance often comes from me, leaving me at times feeling physically exhausted. 

His special needs also require that I take him to a lot of doctor appointments, deal with the resulting medical bills and health insurance claims, find ways to stimulate his development at home, and work through some difficult emotions about his medical issues and development. 

I'm sure many parents of kids with special needs can relate: This is all a lot to deal with, and I need breaks.

If/when you need a break, it's a good idea to have your spouse, partner, babysitter, neighbor, or a family member watch your kid for a while. If that's not an option, I don't think there's anything wrong with having your child (2 years old or older) watch a video. It's not unusual for me to let my 4-year-old son watch an episode or two of "Daniel Tiger's Neighborhood" on YouTube while I do something that helps me clear my mind and/or feel more positive, like cleaning or organizing.

6.) Take breaks from focusing on your child's development

It can be exhausting thinking about your child's development day after day after day, and trying, trying, trying to help him progress in certain areas. It can be especially exhausting—and disheartening, even—when your effort isn't leading to any obvious progress, or when the progress seems quite slow.

Sometimes it helps to take a step back and not focus on your child's development for a while. Maybe you need a day, a week, or even a month of doing nothing specifically therapy-related with your child at home and, instead, just enjoying playing with your child at whatever developmental stage he's in. (Of course, play can be therapeutic for your child, but it's okay to not focus your mental energy on the therapeutic aspects of play for a while.)

One year for my birthday, I gave myself the present of canceling all of my son's therapy appointments for a week. (This was back when he was a baby and I was attending all of his therapy appointments.) That week, I played with him and enjoyed him, and I went back to therapies the following week feeling more refreshed.

I recently took months off during our recent move. I did play with my son and help him practice drawing and verbalizing, so it wasn't a complete break, but I didn't spend a ton of mental energy during that time focusing on my son's development. 

7.) Give up extra activities that are not fulfilling 

Are you doing any volunteer work or other activities that you're not finding fulfilling? Maybe you're on a recreational sports team, the leader of a Boy Scouts troop, or a member of the Parent-Teacher Association at your kid's school.  Is there someone else who's willing and able to take your place, or is your commitment in that role coming to a close? If so, it's okay to step down.

Raising a child with special needs is a big job, and by eliminating extra activities that don't fulfill you, you'll have more time and energy for your child and possibly for other activities that are meaningful to you. I wrote more about this topic here.

8.) Set up automatic payments on bills

As you may know, it's often possible to set up automatic payments for things like mortgage or rent, electric bill, gas bill, car payments, and car insurance. Doing so means you don't have to remember to pay these bills every month. This is especially nice when you already have a lot to remember and think about, as parents of kids with special needs often do.

9.) Sign up for paperless bills 

By doing this, you eliminate paper clutter that takes time for you to go through, and you save a tree while you're at it. Win, win.

10.) Designate a spot in your home for bills only

Setting up automatic payments and going paperless aren't options for certain bills, like medicals bills, in my experience. It's a good idea to keep these bills in a designated spot in your home that is for bills and only bills. That way, you don't have to rummage through a pile of papers looking for them or, worse, wander around your house looking for them. (I've been there.) You know exactly where they are when it comes time to pay them, especially if you keep them in a visible location.

In my home, I now keep a mail organizer on a counter right next to our front door. It has 4 open slots. I keep bills in the first slot so that I can see them and remember to pay them.

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I hope you found these tips helpful. You might already be doing some of them, in which case, great! If you have any additional tips on how parents of kids with special needs can save time and energy, please share them in the comments section below!

Thanks for reading!