Awareness Week for Cri-du-What? Syndrome

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

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!

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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Public Transportation and Children, including Special Needs…

crowded bus

*photo by nats’ photostream at flickr.com

Imagine getting on this bus with Baby in the front pack and Toddler trying to free his hand from yours. You help Toddler climb the giant steps up, only to find the bus crowed with no seats. With Toddler in front, you tighten the grip of his wriggly hand while you grasp with the other hand the hand grip swinging from the ceiling. The bus lurches forward. You stumble a bit. You close your eyes praying for your lives and cursing yourself for taking the bus. Then someone smiles and gets up so Toddler can sit. You stand swaying back and forth, or more likely jerking forward and backward while bouncing Baby, who at this point has started crying. Somehow the bus gets more crowded. Your stop is coming up. You begin planning the exit strategy in hopes that you don’t loose Toddler and don’t crush Baby. Then, the Mommy Panic Button is pushed – what if Toddler doesn’t get off with you? What if he gets lost? 

Imagination or Real?

Maybe you didn’t have to imagine this because you just experienced it this week AND to top it all off you are in a foreign country. I’m pretty sure I have had this kind of a day. It was WAY too easy to write for me to have imagined it all up.

Transportation Holder

When our son became old enough to have his own transportation card (like a debit card for buses and subways) we bought him a holder that went around his neck. All the kids now have one. Jie Jie just got a new one for her recent birthday.

photo.JPG

“But a transportation holder isn’t going to help…”

No, just having the holder and the card are not going to help. I agree. That is why we decided that in case we should get separated from our kids, they need to have our phone numbers in the holder as well. So, we have my husband’s business card with his cell number inside, too. This card is written in both English and in Chinese. The dual language is important – not everyone can read English, so the language of your host country needs to be on the card as well. The kids know they are to ask someone to call that number if for some reason they find they are lost.

Special Needs Addition

Since Jie Jie is a special needs child, we have added  a little more information to her holder. We also have a card that states, in English and Chinese, that she is a special needs child who cannot speak or have anything by mouth. Then both of our cell numbers are on that paper as well.

I’ve been thankful that the kids have not had to use those business cards to call us. Tomorrow morning we will climb those steps again and face the crowds. We take the bus to school most mornings. Even though the kids have gotten really good about staying close and paying attention when it’s time to get off, I feel a little better knowing they have our numbers in their holders in case something does happen.

Your Turn: Do you use public transportation with your kids? What has been your experience? Share your story below.

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5 Tips for International Traveling with Special Needs Children

Wheelchair

photo by Tom Magliery

Earlier this week I posted about traveling with kids alone. I had just traveled with my two girls alone from Asia to the US. My oldest daughter has special needs, so I wanted to add a few other tips regarding travel with special needs children.

1. Ask for help. This may sound obvious, but sometimes I get into an independent mode and forget to ask for help. I have found that most people are willing to help when asked. During this last trip I asked for help with getting my carry-on down from the overhead compartment. I also asked the flight attendants for extra water. I have to mention that the flight attendants on my flights were extremely helpful and nice. Anyone that travels often will know how oddly pleasant this was.

2. Accept help. Another obvious, but for the flaw I have about independence, I have to remind myself to accept the help that is offered. I know I’m pathetic at times. This trip a man helped me get my luggage from the hotel van into the airport. Although, one needs to be careful and watchful about strangers when traveling alone, I have found that most people just want to be helpful.

3. Wheelchair/stroller use. If you don’t have a wheelchair to bring or you don’t want to deal with yours after you arrive at your destination, then use the airline’s wheelchairs. In the past, we have let the airlines know that we needed it and they have had them ready with someone to push them for us. One instance, we even got to ride in the golf cart from one gate to the next. For this trip, I chose to bring our own wheelchair. Jie Jie is walking okay, but she tires easily and with jet-lag and such I was afraid of meltdowns. I checked her wheelchair in at the gate and she walked onto the plane on her own. When we arrived we had to wait a bit, but they brought her wheelchair to us. Although, I do remember a few years ago they forgot to load the stroller, but the airline was great about providing a wheelchair at each layover. A few days later our stroller arrived at our door from the airline. So, if you do take your stroller/wheelchair make sure you have the correct address on the check-in tag.

4. Make it known. Let the people at check-in, security, and at the gate know that you have a child with special needs. This may sound so ridiculous, but I found that not everyone “saw” Jie Jie’s situation. I guess they thought she was just a child in a stroller? Anyway, letting the people know made all the difference. We were able to board earlier, and the security went really smooth. They were understood that we were going to be slower. Some officers helped me put my carry-ons on the x-ray belt. Most of them smiled and were friendly with the kids. I know this ALL depends on the individual, but I really had a good experience with security checks. 

5. Be grateful. I think as a parent of special needs children we sometimes have the expectation that we should get special treatment. Don’t get me wrong here, I agree that the disabled have rights and we need to stand in and fight for those rights. That is not what I’m getting at here. What I’m saying is, we shouldn’t forget to say “Thank you” to those who help, even if it is part of their job. Smiling at the people who are helping and being pleasant is another way of showing gratitude and it brightens their day, too. Demonstrating gratitude for our children, whether they are disabled or not, is a great way to begin teaching them to be grateful and polite to others early on. *Note that with international traveling, other cultures may not treat children with special needs with the same “rights” as the country you come from.

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

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Interview with the Lai’s, authors of “I Am Special”

As promised, the interview with Lai Yit Loong and Catherine Lai, parents to a special needs TCK. All answers are from Catherine unless otherwise noted.
Where did you grow up?
I was born and raised in Singapore.  Loong was born in Malaysia and went to Singapore for education when he was 15 years.  We met each other in Singapore.
How old was Benjy when you began to notice something was different?
Benjy was about 8 months old when I noticed that he was not meeting the milestone of babies that age.  I sent him to the doctor regularly to follow up on his progress and we all thought he was a late bloomer.  I enrolled him at Tiger Tots when he was 2 years old.  About 6 months later, his class teacher suggested that Benjy might be autistic and told me to look into it.  Benjy was diagnosed as ASD at about 2 years and 10 months.
How did you react to the diagnosis?
From the suspicion that he was autistic to the final diagnosis, I was just very anxious and I was scared.  I was sad too because he was our only son, the son that everyone in our family (especially my in-laws) was waiting for.  It was difficult to accept but I knew that God has a plan for us and there is no reason why I should question Him.  Loong and I accepted this very well and we were more interested to know how we can help our son.  Sometimes I do feel sorry that my husband could not have a regular son that could rough it out with him, but I am sure Loong does not feel that way.
(Loong’s input) He has made me a better father. I have become more sensitive to and aware of Benjy’s developent, attentive to his needs, and become more involved in his life. Benjy has also bonded the family closer together. He has become the center of our universe and focus of everything we do. I have learnt to do many things which I have not attempted before, such as changing his diapers and cooking his meals. He has also inspired me so much that I wrote a book last year just for him.
You have three other children. How did they react to the news?
In the beginning, my girls could not understand what Autism was.  They were very curious about their little brother and they tried so hard to help him achieve the different milestones.  To teach him to crawl, they would literally be on the tummy, wiggling around to demonstrate to Benjy how to crawl.  They love their little brother very much and they are extra gentle, caring and patient towards him.  They allow him to get away with many things.
Did you ever think that you should move back “home”? Why?
I did not want to move back to Singapore because my husband’s job is in Taiwan.  I was afraid that moving back might affect his employment.  I believed that God has given us a special child and He will provide a way for us to be able to help Benjy.  I pray a lot and make use of all the resources that God has put around us.  Loong and I were prepared to move back to Singapore should we fail to find resources to help Benjy.
What has been the hardest part with raising a special needs child in a foreign country?
It was easier to handle when Benjy was a baby because he did not display behaivour that tells him apart.  As he gets older, it becomes more obvious and Benjy sometimes will behave odd in public and it can be a little embarrassing because people stare, judge and sometimes become excessively ‘helpful’.  Taiwanese are outspoken. They like to come forward and tell you what to do.  There are also people who come and openly criticize us because they think we spoil our son.  In the beginning I try to explain his condition but I got tired of it and realized that I did not have to justify my son or my action.  It is more and more challenging to bring Benjy out without causing a scene.
Do you have any advise for others who are raising special needs TCKs? Please share.
The earlier we can accept their special condition, the better it is for parent and child.  Your spouse and you must agree to accept, move on and work together to help your child.  Read as much as you can about it.  Be open about it, the more I talk about him to my friends, it actually made me feel better.  I mostly find my strength from God and in the bible.  Attending a good bible study class (like BSF) helps me whenever I feel depressed.  Whenever I am depressed, I seek God.
If you are more interested in reading more about the publishing side of “I Am Special”, check out this interview I did with Yit Loong here.
I’m so thankful they were willing to come and share what they have learned as a parent to TCKs, and to a special needs TCK.
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“I Am Special” Book Review

“I Am Special” by Lai Yit Loong and Catherine Lai is a picture book about their son, Benjy. Benjy is special because he is the youngest of four TCKs and the only son, but more so because he has autism. Written in first person, the reader gets a glimpse into Benjy’s life and the journey he is on. His parents write that, “through this sharing, [they] also hope to reach out and encourage many children out there who are on the same journey as Benjy.”

I believe this book does encourage other children. My daughter who has special needs likes to look at the pictures. I believe that she understands the message of the book, that she is special, too.

If  you are interested in getting a copy for yourself please know that all proceeds go to the organization Taiwan Sunshine. You can buy a copy of the book here.

*Next week, watch for an interview with Yit Loong and Catherine. It will be encouraging and inspiring as they share about raising their TCKs!

Looking Past the Disability…gifts and talents

***This will be one of several pieces on lessons that I am learning from Jie Jie, one of my TCKs.

Disability. Handicap. Special Needs. Special Ed.  Words that just don’t tend to flow off the tip of one’s tongue easily when talking about a loved one or someone else’s loved one. I find that people (some, not all) feel uncomfortable using these words, especially around me. A mother to a mentally handicapped daughter. Hey, even I feel uncomfortable using those words to describe one of my most treasured gifts given to me. They are NOT pleasant words. They don’t bring encouragement or happy feelings, but they are real and can’t be overlooked.

My daughter is a three year old trapped in the body of an eight year old. Trapped is probably not the word that she would use. If she could communicate, I believe she’d tell me it is “Great!”  I mean, what three year old wouldn’t love to have the height to reach the cereal box to sneak a snack when mommy isn’t looking? I know she does. She doesn’t tell me in words. That smile of success, those squeals of joy complimented with the beat of hand clapping is enough for anyone to know she is quite satisfied with life.

Over the years she has been teaching me much about life, about giving, and about love. Every once in awhile, I’ll share it with you. Today is one of those days. This lesson is something I knew to be true in my head, but to really see it makes has made me know it and believe it to be true.

This lesson? That each person possesses a gift or a talent that just naturally flows from them. It maybe something that everyone notices like being athletic or joyful. Or something that is not noticed like discernment. Some may label these “gifts” as personality traits, unique qualities, or rather just a person’s nature. Maybe this is true, but I think it is more than just that. As a Christian, I believe we’ve all been given some sort of gift or talent that is to be used for God’s glory. 

Even people with disabilities.

My daughter? I see compassion and hospitality naturally flow from her personality. It isn’t a lesson I’ve taught or even really intentionally tried to teach. It is just something she naturally does.

Compassion. She cares for her stuffed German Shepherd, Shrek. She pets him, watches TV with him and tries to feed him real food when I’m not paying attention. She’s very caring for her baby dolls, making sure they are rocked and loved. Many days I’ll be handed the “baby” and a blanket. As I swaddle this doll again and again, Jie Jie signs for me to sing Twinkle, Twinkle Little Star.  And lately, I’ve seen her compassion for those hurting. One day I saw her facial expression soften as she squatted down beside another little girl that had just fallen down. Jie Jie patted the injured girl and rubbed her back until the girl felt better. She didn’t needs words to be compassionate. She didn’t need a band-aide. She was just compassionate to care and give.

Hospitality. This one just came to me right after Christmas. I have noticed that any time someone comes over for a meal or coffee, that Jie Jie always runs to her room and grabs either a book or a toy. At first, I thought she wanted our guest to read or play with her, but then I realized that after she handed off the item she would turn around and jump up and down with either a squeal or come and give me a hug. I feel like she wanted them to feel welcomed, to have something “fun” to do while they were visiting. To her just sitting and chatting is not so fun, I guess.

Now that I’ve noticed these gifts I want to help her use them more. I want to create opportunities where she can practice these gifts. I want to show her how to be gentle with my friends’ babies. I want to show her more ways to be hospitable in our home when guests come over. I want her to grow and develop in these areas that seem to be natural and in a way, easy for her.

Your turn: What gifts have you noticed in your children, whether they be special needs children or not? How have you helped them grow in those gifts? Have you ever thought about this kind of training? Please comment below.