Category Archives: Special Needs

Learning Simplicity

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Birthdays. That word seems to have lots of emotion attached to it, doesn’t it? Think for a minute. A child begins counting down the days until the BIG day comes immediately the day after their birthday – unless you celebrate Christmas and then there is a mini-break. They are excited for the presents, the cake, the anticipation of it all. As we get older, many of us (not all) dread watching the number of candles added to the cake until it looks like one big fireball about to explode. Parents of the birthday child…well, planning out a party can be stressful, especially if you live overseas you have this idea of making the party a top-notched one right off a Pintrest page.

I admit, I have tried to be one of those moms. I have lugged party hats, plates, cups, napkins, banners, etc for all three kids half way around the world. I have a patient husband. I loved making the cakes, decorating, and planning the games to all go around the theme. Then the day of the party would come, and I’d be nervous – I’d be smiling and laughing, but deep inside I just wanted it to end. I was afraid it would flop. I know silly me, it isn’t about the party, but about the child… A few years ago, I caught on…sort of. My son got older and didn’t want the theme. He just wanted his friends, cake, and playing at the park. It was one of the best parties for me. It was easy and the kids still had a blast. Same for Mei Mei, simple with friends equaled fun.

But, what do you do for a child who has no friends?

Jie Jie has no friends. Really. She has tons of people who love her and who she loves dearly. These people range from adults, kids in her school, to people at church, but she doesn’t have friends. This isn’t a huge issue until her birthday comes around and I try to plan a party. I think her last party was when she was in Kindergarten and we invited her class – the special ed class in the local school. Of course, it was themed – Penguins!

Then we started homeschooling, and I’ll be honest every year I dreaded her birthday. Each one reminded me what she lacked – and it wasn’t just friends. I’d be reminded that she was one year older and farther away from the learning curve of other kids her age. Both facts punched the gut and I couldn’t plan anything. So, the past few years we’ve just gone out for supper and had some cake with a few presents. Then guilt would pour over me for not planning a nicer party for her. Nasty cycle.

We just celebrated her 11th birthday last week. A week before her birthday, I felt the pressure, the dread. My husband informed me that we were having a party this year. I asked, “Who are we going to invite?” He told me, “No one, we are going to have a family party.” I’ll admit, I dragged my feet and didn’t think it was going to be much fun – but then he made me go out with him to buy presents. We bought her a calculator, a flashlight, amongst some other things. We talked about what we could do – like games to play, simple decorations, and planned a trip to the zoo for that weekend. Amazing how attitudes can change once the focus shifts to more positive thoughts. My husband is such a great and wise man.

The day of her birthday, I brought her and the kids home early. We frosted the cake and set up the game, “Pin the Tail on Bullseye” that my sister had sent to use for her birthday last year. Ge Ge blew up the “Toy Story” balloons, also from last year’s package that we hadn’t used. When my husband got home, the party began. We all played the game, ate cake, and watched her open presents. We took her out to eat for supper and the restaurant sang to her and gave her a birthday balloon. This past weekend the five of us went to the zoo because that is what she wanted to do. She wanted to see the giraffes.

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It was the best birthday party we’ve had in years for her. You know those moments you sit back and watch the world around you – in amazement of your family and how grateful you are for each one? That was sentimental me this past week. I know that she would have had a blast with just cake and presents, but playing the game and laughing together was what I needed. A reminder that simple pleasures like a party is good for the soul.

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So, how do you do birthdays? Do you go all out (don’t worry, I won’t judge you…in fact, I applaud you!) Or do you do simple family birthdays? Do you have a child with special needs? What do you do? Please share your stories and thoughts in the comments below.

The Transition for the Child with Special Needs

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I just wrote about helping your children transition from the summer holidays to going back to school. You can read that by clicking on “The Transition“.

How about kids with special needs? They may need a little more time and creative ways to help them with this transition. Below are just some additional ideas to help them adjust to the transition.

  • Talk about it. Talk about what school looks like. Talk about their friends and what they will do while they are there. Even doing some role-play activities to help them get into the mindset will help.
  • Count down – Make a simple chart with the number of days left until school starts up. Let your child mark off each day. HINT: Don’t start too far away from the first day as it might be too overwhelming. You know your child, so adjust accordingly.
  • Visit the school: If the school allows it, make a trip to the school to go and see the classroom, to reconnect BRIEFLY with the teacher. (Hint: Don’t stay more than 5-10 minutes. Teachers love to see you, but they do need to get their work done.)
  • GRACE: Give your child grace and give yourself grace those first few weeks that school starts back up. Remember that sometimes change and transitions are not always what we hope or dream they will be – but they eventually do adjust.

I know I need to get started with this transition with Jie Jie. Otherwise she just may think that I threw her into the Arctic Plunge Swim.

If you have a child with special needs, how do you help them get ready for going back to school? Please share in the comments below.

Coming out of Grief

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I’m joining in today with Velvet Ashes in their Friday “The Grove” linkup. This week the topic is on what every expat knows well – GRIEF.

Grief comes in various forms for the expat.

  • Every spring we say good-bye – either we are moving or someone we know and have grown to love is moving.
  • We say good-bye after every “home” visit – each getting a little harder as we see our grandparents, parents aging.
  • We miss family gatherings for birthdays, Christmas, Thanksgiving, World Cup parties, or whatever…fill in the blank.
  • Death of dearly loved ones – either family or tragic accidents

For me, those have been true – but as a parent to a child with special needs I seem to grieve regularly. I don’t mean it is there every single day all the time. No, my grief hits me when I least expect it. It sometimes hits hard like a punch in the gut. It is strong enough to bring instant tears – but not strong enough to leave me in a pit of despair. I wrote a story for the anthology MONDAY COFFEE & OTHER STORIES OF MOTHERING CHILDREN WITH SPECIAL NEEDS. The section below, I feel, illustrates how grief tries to pull me down.

 I’m told that parenting a child with special needs stays difficult. It doesn’t just “go away.” I have found that to be true. Grief finds me at odd places. It finds me at the park where I see girls playing and laughing together while my daughter stumbles up the stairs to go down the slide. Grief finds me in the hospital holding the results from yet another developmental testing and I see she isn’t mentally where I thought she was. And Grief brings tears to my eyes when party invitations are passed out and she didn’t get one. Grief reminds me that she doesn’t have friends her age. She doesn’t seem to notice, but I do. I hurt.

Through all the grief and mourning, joy does come. It always does. It comes with a kiss and a hug. Joy comes with each new word she speaks. It comes when she dresses up in her cowboy hat, boots, and comes out swinging her pretend lasso. Joy comes from watching her love life in the way I sometimes wish I could.

Yes, joy does come after the mourning.

 

I read a recent blog post from another parent of a child with special needs and she stated it, too.

She is happy. She is totally fine. She doesn’t feel like she’s missing out. It’s not her dream, it’s mine.

Grief comes to everyone – unless you are a hermit who lives in a cave with no pets. As expats we must learn to go through the grieving process, to embrace it knowing that it will pass. And as a parent of a child with special needs, I’m learning that it’s okay to grieve – but that I need to not stay there. Here’s how I get out…

1. Count my blessings – you know that song, “10,000 Reasons”. I made a chart on the wall – but even just saying them out loud helps.

2. Sing Louder – speaking of songs, I put on praise music and turn it up real loud and usually break out dancing. It gets all of us into giggles.

3. Remind myself that my daughter is not sad – in fact she loves life to the fullest (most of the time). Just yesterday I used this…at the water park I started to feel sad because she couldn’t run off with the others to zip down the slide, but I looked up at her jumping in her life vest laughing and splashing around. She was fine – so I would be, too.

4. Take note of the gifts and talents that my children, especially my daughter with special needs, have. Not in a “I have the best kids in the world” kind of way, but in a “Wow, look how they are growing and giving to others” kind of way. (but, just so you know….I do have some pretty awesome kids!)

Your Turn: How has grief affected you? What has helped you through the process? Please share in the comments below.

What I’ve Learned Raising a TCK with Special Needs

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I’ve had the great opportunity to write about raising a special needs child for two different websites.
The first is about what I’ve learned raising a TCK with special needs. To read more about it click here.

My other article is a comparison on running a race and raising a child with special needs. It usually isn’t the race we signed up for, but it is possible to learn all the new rules. If you’d like to read more please click here. This is part of a promotion to sell a book, in which I wrote a story for.

Please feel free to share them with friends who you might know – my hope is that a few will be encouraged.

Expat Special Needs Parent: Marriage Homework

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Expat parents of children with special needs know a few secrets. They experience

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loneliness, and the feeling of “alone-ness” like other expats, but many times even more so. Let’s face it, between therapy sessions, outbursts of children, and the mobility of the expat community these seasons of being lonely are often. The last secret that expat parents of children with special needs know is the secret of marriage: Being married is super hard work

Divorce rates are extremely high for parents of children with special needs. Many sites like this one, states that the rate could be as high as 90%! That is high! I don’t know what the rate of expat parents are, but I’m sure it can’t be too far off from that statistic.

Why is the rate so high? Stress is the simple answer. Stress of money or lack of it. The cost of the various therapy classes, the surgeries, and the medical equipment required for the child is not cheap, and depending on the country you live in it can even be more expensive than in your home country. It all adds up quickly. The other factor is the stress from the demands. Children with special needs require a lot of attention. They splatter Nutella, they climb into the bathtub fully clothed, and many are toddlers running around in bodies of a preteen. The time it takes to teach, re-teach, and re-teach again just basic living skills takes away from time together as a couple. If you have other children in the home, then more time is needed for them as well. Not spending time with your spouse causes stress on many levels – communication, intimacy, friendship, etc.

With odds like that, it seems hopeless – even to me.

Hope is there, though…

It is there for me because I choose to not dwell on that 80-90%. Instead I focus on the 10-20% that I want to be in. My husband and I made an agreement when we were married that we would not even joke about divorce. When Jie Jie was diagnosed and we read the statistics, my husband boldly told me that we would work harder to maintain our marriage, that he’d work harder to keep our marriage a priority~I’m such a blessed woman.

Has it been an easy road laid with flowers and fairy-tale music playing in the background? Wish I could say YES, but I have to be honest. It has been tough, and I mean T.O.U.G.H. I’m married to a great guy. He is. He’s patient with my emotional whacked out side that comes out after I’ve had five days of not much sleep due to a little girl (or two) walking around the home in the middle of the night. He’s great, but he’s not perfect. And sadly, neither am I. It takes work.

I want to share with you what we do to keep our marriage strong. We’ve been married for 14 years this July, but these idea were shared with me from couples that have been married much longer than we have.

We choose to make time for each other. That’s it. It’s simple, but it works. We’ve had seasons of “date” nights, where we went out once a week on a date. We had a friend that could watch the kids and we’d catch a movie, supper, or something as simple as coffee. Now, we are not able to go out as often, but we still take day trips or spend a night at a local hotel every once in a while. Since we can’t go out as often on typical dates, we take an evening walk. We are able to do this after the girls are in bed asleep and our son is still awake. We walk around our neighborhood and talk about jobs, problems with kids, future moves, and whatever else that comes to our minds. It’s been a great way to stay connected.

Your Turn: Maybe you don’t have children with special needs, but what do you do to keep your marriage strong? Please share in the comments below.

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Combating Alone-ness in Expat-land

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A few weeks ago I wrote a response to an article I read about raising kids with special needs and the reasons I think that they run true for an expat. One of the reasons was “Loneliness” due to mobility of expats and the fact that we live so far from family. This week I want to look at “alone-ness” which is different than being lonely.

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From the Merriam-Webster online dictionary, “alone” means to be separated from others. As a parent of a child with special needs, I do feel at times “separated from others.” The needs of Jie Jie are not like the needs of most expat families.

Jie Jie was tube fed her first six years of life. When visiting family in the US, we’d have checkups with the doctor and I’d stock up on feeding supplies that we needed to get us through a year or two. One spring, we had enough feeding tubes to make it back to the US – or so we thought. At church one Sunday morning, her feeding tube came out. Normally, this is not a huge deal because I always had one on hand for emergencies. The problem this Sunday was that the “emergency” tube was the one that broke. We had no more. We were able to creatively keep the tube inserted and feed her until we could see a doctor. Alone-ness surrounded me – although every single expat wanted to help, none could.

I was separated out from the others.

We contacted the company that made it and they located the exact feeding tube we needed in the same city that we lived in. The doctors there had just started using that type of feeding tube, so they were quite a bit more expensive – but we could get it the next day.

So, how do I combat this feeling?

1. Make friends with the locals and search out other expat families. There is a language barrier sometimes, but I have found a few who even have the same syndrome as Jie Jie. I am able to ask what is available for treatments, where to buy things, and even what they do for various situations. If you hear of another family, contact them and find out what they know and do with their child. I just recently discovered online speech therapy this way.

2. Online communities. Since Facebook, groups have formed for all kinds of things. I have found one that is a community of families that have children with the same syndrome as Jie Jie. It is here that I can post questions about development or other questions I feel I can’t ask. I also gain encouragement from the others that post about their children

3. Pray. Yep, I pray and ask God to give me wisdom in each situation. I go back and remind myself of his promises, his faithfulness, and his goodness. I remind myself that really, I am not alone because just as Moses promised Joshua, in Deuteronomy 31:6, “[God] will never leave you or forsake you,” I know that as a follower of him, he will never leave me or forsake me either.

So, though at times I have felt very alone and even hopeless – I’m not. There are people around me. I have a great husband who is a great team player, but we do have to be active in protecting our marriage. I’ll be writing a post on this huge topic soon.

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An Expat Special Needs TCK Parent

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I recently re-read “6 Secrets Special Needs Moms Know But WON’T Tell You.” If you IMG_3649haven’t read it, go over and at least scan the list. It’s good and fairly accurate. I say that because I feel the same and I’ve heard the cheers from other moms out there. Like this mom, who was also inspired from this same article to write “Special Needs Parents“.

As an expat though, I think at times some of these truths could ring louder…and here is why.

1. Expats are mobile. We move, or our friends move. Like it or not, it is the nature of “expatland.” If we are the one moving, then it is finding new doctors, therapists, schools that have special education, housing that is safe for the child with special needs, and making new friends ~ and I’m not even getting into the emotional side of transition. If it is our friends that move, then new friends join the circle. Always changing…

2. Loneliness: Mobility can add to loneliness. The friend who understands your child, who forgives you for having to cancel the fifth coffee date that month because of something related to your child, the friend who always makes you laugh is no longer there. The time and energy it takes to invest in making new friends is exhausting ~ making one feel like it isn’t worth it at all. To add to this lonely feeling, going out in public and feeling the stares, the odd looks, or hearing the whispers is tough. This is normal in any country, but if you live in a country where the parents of children with special needs are believed to have “bad blood”, then one may not even want to go out.

2. Alone-ness. Not too many parents of children with special needs live overseas, so feeling “I’m all alone” haunts the mind of the parent. The internet forums for specific needs are a great resource for parents, but having someone in person who can relate to those struggles of living overseas is better.

3. Marriage. YES, this is so important and sometimes seems difficult. The divorce rate is very high for families of children with special needs. Couples have to work at their marriage to make it last. Most go on date nights every week, take weekends away without the kids, or even let the kids stay with grandparents for the week to have a second, third, or fourth honeymoon. As an expat, it can be difficult to find people to watch your children, especially if your child has special needs. People are not always comfortable and parents may have issues with finding people they fully trust – see #1 & 2 above.

So, why do we do it – live in “expatland?”

I can’t say for the other parents of children with special needs, but for our family I can say that we live here because it makes the most sense. It is not because we are against living in the US or in Germany or because we are hard-set on being expats. Nine years ago when Jie Jie was diagnosed, we were ready to figure out how to live in the US if we needed to. With no hesitation every doctor and therapists told us to return. So, we’ve taken it one year at a time.

We look at our whole family, not just Jie Jie’s needs. We look at our other children and their needs. We also look at what God is wanting us to do. Two years ago my husband quit his job as principal at the “American Christian” school to focus more on the nonprofit organization that he helped start called Taiwan Sunshine, which supports families of children with special needs. So, for now, this “crazy” expat life makes sense.

Next week I’ll share a few ideas to help fight those expat “heartaches” of being a mom to a child with special needs child.

Your Turn: What do you find difficult as a mom/dad to a child with special needs while living overseas? Even if you don’t have a child with special needs, what do you find difficult? Really I do want to “hear” what you say. Go ahead and comment below.

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Awareness Week for Cri-du-What? Syndrome

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Cri-du-Chat is French for “Cat’s Cry”. It is the name given to the syndrome that Jie Jie has. The syndrome was discovered 50 years ago by the French geneticist, Jerome Lejeune. This syndrome is also known as 5p- Syndrome or Lejeune Syndrome.

So much has changed in 50 years. One of the major breakthroughs has been not institutionalizing the children. For the past twenty years, or so, children with CdCS have been able to remain at home with their families – with the discovery that they actually develop so much more through the interaction and intentional therapy play starting at a young age.

The big breakthrough for me, as an expat, was the internet and communicating with other families that have a child with CdCS. I have been so grateful that I’ve been able to receive the services that I’ve needed to help our daughter develop and grow here in Taipei, but the lack of communicating with other parents has been difficult. Now, I’m able to check on the Facebook page or the website to get the latest information or to get a question answered. I don’t feel as if I’m wading through an unknown land without a map or compass. I know have fellow travelers who have gone ahead and left markers to help me navigate this new territory of parenting.

This week, May 5th-11th is the 2nd annual International CdCS Awareness Week. It is a time for the families to be a voice for their child who can’t speak up. It’s a time for us to encourage each other, to be excited that we are not alone, to cheer our children on as they develop more than we ever expected or imagined. If you’d like learn more, here is a short video that gives you a glimpse of what these kids can do.  I CAN

If you are living in Taipei or thinking about moving here with a special needs child, I wrote an article that just came out in Centered on Taipei‘s May issue titled “Living in Taipei with a Special Needs Child”.

Living overseas with a special needs child is not always easy, but neither is living overseas with children. Period.
Your Turn: Whether your child has special needs or not, what has been the most difficult thing about living overseas for you? Please share in the comments below.
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Field-Trip Madness

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We’ve been sick around here for the last few weeks, but I think we are now coming out of it. Finally.

A few months ago, I was thrilled to be asked by Carole at The Expat Child to write an article for her site. If you’ve not heard of this site, you need go and check it out. She has a wealth of information for parents relocating with their child(ren).

I had just survived a couple of field-trips with Jie Jie when I wrote this article. I shared some tips that I learned from the good, the bad, and the could have been ugly.  Here is a clip from that article.

Though staying home would have been easier, new experiences are good for her development – no matter how hard they may be for me. So, I took a deep breath, said a prayer and entered the pottery shop.

If you want to read the rest of the article you can click on the link: “Surviving Field-Trips with Special Needs Children”

Here’s some of my favorites from The Expat Child:

Jet-Lag and Children

Where is Home?

Step Out of Your Comfort Zone

Vacations and Special Needs – it can happen!

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Vacationing with children is SO different then the days before children. Before children Uwe and I would just pick a destination and plan around job schedules. Packing could be done the night before. Living abroad, travel was almost as easy as breathing.

Then child number one came and travel changed just a bit. Packing was focused more on what he needed and therefore took more planning. We still hiked up mountains and other non-child friendly activities. Our thoughts when choosing a destination was – If we can carry him in the backpack carrier, then we’ll do it. Once child number two came along traveling wasn’t nearly as easy as breathing. Then Jie Jie was diagnosed…and what seemed easy required much energy and planning. She required so much – feeding tubes, food to feed her, stroller, diapers, extra clothes, etc.

By the time child number three came along, we weren’t sure about traveling at all.

Those early years, when we had three under four-years of age, I learned something – keep my expectations low. Kids get sick on vacations. Kids get tired and grumpy on vacations. Kids might not like the vacation places you chose. And a whole lot of other things can go wrong, like the weather, the food, the room…you get the picture.

No as our kids are older, we involve them more with the vacation planning. We ask them their opinion. We look up the place on the internet or on Google Maps and let them see where we are going. We ask them what they would like to do while we are there.This has helped with Ge Ge and Mei Mei, but Jie Jie is different. With her we need a different approach.

We still involve her in the planning.

We show her the pictures of the parks, the playgrounds, the beaches, and any animals we might see. We tell her how we are going, whether it is by train, plane, boat, and or car. This gives her an idea of what we will be doing and gets her involved as well.

Flexibility

This is probably true for raising kids while living abroad, but for vacationing with special needs kids it’s very important. They don’t always respond the way you think they might and they may do better than what you thought. For instance, Jie Jie loves the beach and the sand. She likes fish and turtles, so I thought she might like snorkeling – well, a modified version of snorkeling. Geared up in her blue life-vest and mask, we walked her across the shallow reef to the edge. The plan was to let her look into the water, but after one short glance she was done. I’m not sure if it was the water that seeped into her mask, a darting bright blue fish, or just all the new experiences at once that caused her to freak out, but she was done. We didn’t force her to look anymore. We told her she did a great job and walked her back. She was perfectly content playing in the shallow water. Having flexibility allowed us to change plans – like I stayed with her on the beach while Uwe took the other two out snorkeling.

Try new things, but still keeping expectations low.

We do this not because we are negative thinking people, but because we try to be realistic.  For instance, we just took a vacation to Xiao Liu Qiu, a small island off of Taiwan. This island is very small and doesn’t have many cars. Our original plan was to bike with the kids, but once we got there and saw the hills we knew that biking wasn’t going to work. We decided to try the scooters for a day and see how it went, not thinking Jie Jie would sit still and behave. She surprised us. She did just fine. We scootered around the whole time we were there.

Slow it down.

Don’t expect to do everything. As a family choose a few things and do those. Allow for breaks and even rest times in the room. We allow the kids to each choose one activity they would really like to do or see – then we do those things first. Sometimes Jie Jie can’t participate in the chosen activity – that’s when either I or Uwe take her to do something else.

Not every child is the same. This goes for special needs children as well. Just because your child may have some issues that are harder to deal with doesn’t mean that you can’t have a fun family vacation. With a bit of creativity and flexibility, you can even take more exotic trips with your whole family.

Your Turn: Have you traveled with your special needs child? What are some vacationing tips that you have when you go? Please share in the comments below.

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