Tag Archives: special needs

A Day in the Life of Me: Domino Affect

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It’s September* and everyone is back in school. Did you hear me sigh? Did you sigh along with me? Don’t get me wrong summers are good, but with a child with special needs they are usually not great. She needs a set schedule with a para and we don’t get either in the summers. Summer schedules are suppose to be flexible. They are to be a time to relax, take a vacation with the family, right?

So, with school starting and the schedule in place life would flow down a lazy river. Nice and easy. You’ve heard of the domino affect, haven’t you? You know after one domino falls, others go right behind it? Today’s story will follow the domino trail; not a lazy river experience.

Domino #1: Beach & Teas

It was a school holiday, Mid-Autumn Festival. So, off to the beach we went for the morning. Just the two of us because the other two were out of town. The sky was blue, the wind was strong, and the sand was warm. M2 rolled around in the sand and waves, built sand mounds, and ran up and down the empty beach. Perfect.

Teas are usually something we buy to take to the beach, but since we left so early there were no shops open. So, after rinsing off the sand and sweat we stopped at a shop before going home. My wallet was at home, but I had a zip-lock full of copper coins. They are worth 1 New Taiwan Dollar. I ordered and paid with 110 coins. Bless those workers hearts as I counted out stacks of ten coins eleven times. (Maybe you are wondering why I had a bag of coins in the car. Well, I’ll save that story for another time, but you can try to guess in the comments.)

We got home and I put the teas in my bag.

Domino #2: Keys & Flipflops

I gathered all our belongings and coaxed M2 out of the car. She is sometimes a sloth when she wants to be. I reminded her that we had tea and then threatened that she would not get tea if she didn’t hurry. Mama had to use the bathroom.

We live in a house with a yard. To enter you have to unlock a tall solid metal swinging gate. Ours is blue. I fanned out the keys on my key ring, but could not find the key to this gate. I looked through the bag to make sure they didn’t get buried under the towels and sand.

“No! Please don’t tell me I left them in the house?!?!”

M2 giggled, snorted, and smacked her leg.

I dropped the bag and climbed up the side wall to see if I could be like my super amazing husband who climbs over and jumps down. I looked down. It’s about a 6-7 foot drop, so not bad. But I looked at my shoes. Flipflops. I was not sure my ankles could take that jump onto concrete. And I was sure our dog looking up at me wagging her tail would not catch me either.

I called a friend who has an the extra set and lives just down the road. No answer.

I found a curved tool in the hedges. “Oh, Lord, please let me jimmy this door open. I really need to use the bathroom and need your help.”

Nothing. I try several times. Nothing

I felt my breathing pick up and my heart rate quicken. By this time our dog was whining on the other side of the gate.

I tried once more, probably with a little more frustration than wisdom. But the door popped open. I got in and I didn’t break the lock. A miracle, I think.

Domino #3: Wet bag & Wet Keys

After washing my hands, I went to the kitchen to retrieve our teas and get something for lunch. My bag was wet. Soaked. I reach inside and pulled out one full cup of tea and one empty cup. When I dropped the bag, the seal on the tea opened and out went the tea onto everything, including my car key which has a battery operated button to unlock it. I ran everything under the water to rinsed it off and then gave M2 chocolate almond milk. She was just as happy with that.

Domino #4: Car Alarm

Two days later we used the car to go to church. The key fob has the buttons on it to lock and unlock the doors. They were not working. I manually unlocked the doors and we drove to church. Later that day we were heading to pick up a friend to go to the beach. The car began to lock and unlock on its own. Strange, but I thought, “Maybe the keys are still wet and they just need time to dry.”

Monday morning same, but not a huge deal. Monday afternoon, I go out to the car to pick up M2 from school and the car alarm goes off when I open the door. I cannot get it to shut off. I try several times to unlock and get in, but the alarm goes off. One time I get in without the alarm going off, but then when I started the car it went off again. A little later, I had the car started, but when I pulled out of the drive the alarm went off again. By this time it had gone off four times. I was loosing my mind.

I call handsome hubby. Bless his heart, he was of no help.

“Push the button on the key fob, that will turn it off.”

“Really,” I said, “You don’t think I’ve tried that? It doesn’t work.”

“Oh, then I don’t know what to tell you, but you have to get to school now or you will be late to pick her up.”

This conversation was going on while the alarm was going off. You can imagine how we were both feeling.

I prayed, “Oh Lord, please let this crazy alarm stop. I cannot go down the street with it going off. Please don’t make me stand out any more than I already do!”

It stopped.

I sent handsome hubby a message asking him to let the teachers know that I was on my way.

He messaged back: “I’m sorry I was not helpful. I was mad because I wasn’t there to help you. I’m glad you got it to stop.”

I love that man.

M2 was in the office waiting for me. I did not turn the car off, but left it running while I ran in to get her. We went straight to the mechanics and asked him to disable the alarm system. He did.

With a chuckle.

Conclusion

Dominoes are fun to watch as they cascade around their merry path. But when that path is your life and it is affects so much of what you do, then that is not so much fun. In fact, it can make you aware of thoughts and emotions that you have about yourself, others, life, and/or the world. I’ve been studying Rational Emotive Behavior Therapy in my final class for my Master’s in Care and Counseling. The biggest takeaway is that beliefs directly influence our emotions and behaviors; not the situation or the event.

Example from my story. The moment I realized that I left the keys at home and did not have them to open the door triggered a belief. The belief that I should never do such a stupid thing like forgetting to take the keys to the house with me and this is terrible, I’ll never be able to get in. This belief started the domino affect of me dropping the bag; not setting the bag down. You could probably go back and see where this belief rises back up at various points in the story. How to change your beliefs is through disputing them, but I’ll save that lesson for another time.

*This story was supposed to be published in September, but for some reason I forgot about it. Maybe it was because I needed to understand REBT more and could begin to introduce it to you all as a way to process events/situations in your own life.

A Day in the Life: Graduation Trip

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We have another Senior (Grade 12/ 高三) in our home. Child #2 – our daughter who has Cri-du-Chat Syndrome and attends a local special education school in Taiwan will graduate in the spring. I got to attend the two day Graduation Trip with her and like all the other stories in this series there were lessons learned.

Preparations: Attitude

I got the packing list translated. Thank you Google 叔叔 (Uncle Google). Packed clothes and some extra snacks because you never know. But, the day before we left, I felt my heart racing and tension in my neck/shoulders area every time I thought about this trip. I took fifteen minutes and reflected on it.

I have gone on her other graduation trips, so what was different about this one? What emotions am I feeling about this upcoming trip? What thoughts do I hold that would cause these emotions?

It all came down to not knowing the plan. In my mind I needed to know where we were going; what was going to happen; what to expect. Well, thanks to my husband and Google 叔叔 I learned of the location, but that was it. I then remembered that the last time I went on an overnight trip with her and her class I had a “go with the flow” attitude. I can’t be honest and say that all the tension disappeared, but I can say that I noticed I began taking deeper breaths and relaxing. I worked the tension out with a roller later that evening.

The Trip:

Have a motto

Maybe you’ve heard this saying when you first moved to a new location, or maybe like me you have forgotten it. A friend reminded me of it as she was talking about a recent move and having to remind herself that where she is now is not like where she was previously living.

It’s not bad. It’s just different.

This became my motto for the entire trip.

Asian tour groups are known to have everyone follow the tour guide and not wander off to something that might interest you. They are also known for moving quickly so that you can see everything possible. That way you can get all the perfect photo ops. They are also known for having all the meals planned out in advanced at specific locations. And they help promote buying certain products.

This motto, along with the “go with the flow” attitude, proved to be very useful. For instance, the first day was spent going to three different places of interest. We rode the bus for about three hours stopping for bathroom breaks, of course. Our first stop was a cocoa farm where we saw how they make chocolate from cocoa beans. We even got to see some cocoa trees. We ate lunch there. The food was really good, except for one thing. At the end, we could drop a chocolate into the hotpot (think fish based soup with vegetables). According to my taste buds, fish based-soup and chocolate do not blend well together. But I remembered, It’s not bad; just different – yet I did not drink anymore as I was full from all the food we had eaten.

The second stop on the list was what was translated as an “elves garden.” When we arrived, I realized it was a garden with gnomes. They had some rabbits you could feed, but were not allowed to touch. Well, that proved difficult to avoid with an animal loving daughter. But, I tried. We were only “scolded” once. “Go with the flow” served me well here. They had costumes where we could dress up as gnomes. And as another famous quote goes: “when in Rome…”

From there we drove another hour to a deer farm. We were given instructions on what we could and could not do, then given metal tins with leaves and grain to wander around the lot with deer. They can be quite aggressive for such passive sweet looking animals.

From there was the hotel, where the fun did not stop. After supper they had a DIY project planned and the kids could dress up again. I was ready for bed and thankfully she was too.

Surprises:

With the “go with the flow” attitude, I could handle surprises: good or bad. Like not knowing we would be allowed to swim in the hotel pools and not bringing suits. Disappointing, but we found other things to do the next day.

Or finding out that there is not only a Starbucks at the last bathroom stop, but that they do have your favorite: Pumpkin Spiced. So, I treated M2 to her very first Pumpkin Spiced Frappuccino. Ahh, my little TCK did drink most of it, though she thought it was too sweet. Honestly, I thought so too.

Back Home

We got home and there were two things that I did that helped. First, I had prepared food before we left so I didn’t have to cook supper from scratch. Heat and serve – so easy. And the second, I declared Saturday a Travel Rest Day. We stayed in our PJs, watched movies, and rested all day.

How the Rapids Showed me Beauty

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Life can be like a journey down a winding river. Rivers can be calm and smooth, but usually along the way rapids appear. Life is like that. Sometimes the rapids are exciting and fun, like moving overseas. Other times they are downright frightening, like an unwanted diagnosis.

During those rapids I find myself wanting and sometimes even desperately trying to paddle back upstream away from it all. I long for an easier way, but usually there is no other way. And in the end, I find that God uses those hard situations in my life to transform me.

Fifteen years ago I found myself at one of those bends.

This week I’m a guest writer at Velvet Ashes. You can read more about my story and the lessons I learned by clicking here.

 

*PC Credit: Free-photos via pixaby

Language Learning and Special Needs…a conversation starter

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RaisingTCKs for Mulitcultural Kid Blogs

My children are bilingual, including my daughter who has Cri-du-Chat Syndrome, a disability that affects her mentally and physically. She’s not the only bilingual person with special needs, though. In fact, I know a young adult with Down Syndrome who is trilingual. And I read about another boy with Autism Spectrum Disorder who speaks at least four languages. This goes against the belief of many educators and therapists that children with special needs should focus on one language only. Most of the research focuses on three specialty groups: Specific Language Impairment (SLI), Down Syndrome (DS), and Autism Spectrum Disorder (ASD), but the researcher still believes that other disabilities can learn a second language as well. This is great news for CCKs (Cross-Cultural Kids) and TCK s(Third-Culture Kids) who have special needs and their families who are raising them.

My daughter is fairly non-verbal, but she is able to communicate in both English and Chinese. She uses American Sign Language (ASL), speaks simple words in both languages, and sometimes uses communication boards. We speak mainly English at home and she goes to a Taiwanese special education school where they speak Chinese. Honestly, like most Third Culture Kids she is comfortable living in both worlds. It’s part of who she is.

But, what about just teaching a child with special needs a new language? Are there any benefits? Join the conversation over at Multicultural Kid Blogs where I share some benefits I’ve noticed.

A Mother’s Day Letter to My Younger Self

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It is the night before Mother’s Day. For some reason my mind traveled to a time period fourteen years ago. I was a young mom about to hear my daughter’s diagnosis. With time wisdom grows. It’s through this wisdom that I wish I could have shared these few thoughts with that mom I was back then.

Dear Younger Self-

I know you forgot what today is, but let me gently remind you. It’s Mother’s Day. Don’t put your head down in shame. I know you’ve lived with your mother for the past several weeks. I know you forgot to buy even a simple card to thank her for her selflessness. For all the drives to the city, waits in the hospital, and the endless cooking she has done for you. I know you wish your husband and almost two-year old son were with you instead of back in China. The hospital visits and tests have taken a toll on your mind and body. It’s a scary place to be. You’ve talked with doctors, and even specialists. You’ve held your baby while nurses have poked her with needles. Yet, still no results. No diagnosis.

Emotions will visit you, strong emotions that will come when you least expect it.

Fear…

Don’t play the “What if” game. It will open wide the door to Fear. But, I know you will. The questions will come at you like quick shooting arrows. “What if she never walks?” “What if she dies?” “What if we have to leave China?” Don’t worry; he gets the best of me still today with his quiet whispers of doubt. Fear wants to consume you, but he won’t. Your daughter will get the diagnosis you don’t want to hear – Cri-du-Chat Syndrome. Your mother will be next to you in that small room in shock. Maybe it is a mother’s instinct, or maybe not – but you won’t be shocked because deep down you already know. Your world will be shaken though. Your baby will need a feeding tube. You will feel like all the air was taken from your lungs. Sit tight – the God who created that bundle of joy topped with red curls already knew. He’s not surprised. So, just breathe – in and out, in and out. You will feel like waves are pummeling you to the bottom of the sea, but dive deep into those waves. It is there where you will find peace. Dive deep into the peace that passes all understanding, the peace that comes from our Lord Jesus Christ. Just breathe.

Grief…

Grief will come, in fact, she already has. This Mother’s Day you will grieve for that child you thought you knew. You will cry hot tears that seem to never run dry. They are tears of healing. Release them. Let them wash over your face while they wash over your heart. I wish I could tell you that Grief eventually exits your life, but I can’t. She will come back when you least expect it. Fourteen years later, she still visits me. When I see other kids in middle school laughing with their friends at the local 7-11 or tying up their shoes about to play in a soccer tournament, she comes back. My throat tightens and my eyes begin to drip tears. And there she is. Grief dressed in black. I’m learning that Joy can accompany Grief. It is those times I offer gratitude and praise that Joy is also there. I give thanks for what Matthea can do and I praise God for his many blessings in our life. So, as you grieve this Mother’s Day know that “joy will come in the morning.”

Loneliness…

This Mother’s Day you will feel lonely. Uwe and Marcus are miles away. You feel like you are the only one going through this, yet you know that is not true each time you enter the hospital. But, Loneliness comes and tries to squeeze out those in your life who love you. Don’t let her. Remind yourself that you are not alone. God is there with you. Your family is there. And remember your friends just drove a few hours to spend time with you. They are praying for you. Don’t let Loneliness crowd out the others.

Guilt…

Yes, you will feel guilt. Guilt will overshadow Grief. Guilt will remind you of friends who have lost children. Guilt will point a finger and say, “You’re child is living. Why are you grieving?” You won’t really know what to do with Guilt. You will try to hide Grief, but it will still be there. I want to give you permission to block Guilt out of your life. You have permission to grieve. This diagnosis is hard. There are a lot of unknowns. It is scary. So, don’t believe Guilt. Pray for those friends and be sensitive when you talk with them, but don’t bow down to Guilt.

Hope…

You may not feel like there is any hope right now, but she is there. Hope will come pouring in when you find out that you can go back to China. Hope will come when you gain confidence in using the feeding tube. And even this day, Hope will come in a form of a Mother’s Day gift from your sister. A small cut rock that says, “A Mother’s Love begins long before we can remember…And brings us Warmth and Happiness We Never Forget.”

Give yourself some grace today. Your love for your children comes through. I can’t tell you that everything is perfect and life is like a rose garden. Life isn’t easy. I mean whose life really is easy, huh? But, life is good and full. I can’t tell you all the great things because you need to experience some surprises in life.

I wish that the decade older version of me would send me a letter like this. I sure would like to know how these teenage years turn out.

Your loving “more mature” self,

MaDonna

Raising Children with Special Needs When You Live Overseas

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Forest, Hope, Radiant, Zen, Sunflare

“Your daughter has a rare genetic syndrome called Cri-du-Chat Syndrome, and she needs a feeding tube.”

My dreams, my desires to live overseas, seemed to shatter with that diagnosis. The past 10 months all made sense. This was the reason she was hospitalized in Beijing for bronchitis at 3 months old. This was the reason for choking almost every time she nursed. And this explained why, just a few months before, she lay limp with pneumonia on a large hospital bed in the middle of China next to six other children with some sort of lung infection. All of this led to me flying alone with her to the U.S. for medical tests. This was the reason I sat in that small clean consultation room with a doctor I barely knew.

Was this going to be the reason God would end our time overseas?

And then the haunting question, How am I going to tell my husband Uwe half way around the world on the phone?

To date, that was the hardest phone call I have ever had to make.

When Uwe and our oldest son (20 months) arrived in the U.S., we believed our time overseas was over. At that time we only knew of one other family living overseas with a child with special needs, but our daughter seemed to have more medical issues. As we consulted with surgeons, therapists, and doctors, not a single one hesitated to tell us to go back. This was incredible to us because we, like so many others, didn’t think it possible that families affected by disabilities could live and work overseas. So with a list of diagrammed exercises, extra feeding buttons and bags, and a feeding machine, we returned to China. Uwe went back to work as principal at the international school, and I began therapy with Matthea. Life changed, but God had not. He was still good. He was still providing.

Our story isn’t unique. There are others like us. Last week I was able to interview eight families ministering overseas who also have children with special needs. All of our stories seemed to share the following three themes.

You can finish reading over at A Life Overseas. 

Marathon Parenting

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Two months ago I finished my first ever half marathon. That would be 21km of feet hitting 20170316_155509the pavement at a slow jog. Though my times were nothing to brag about, I finished and I have a medal to prove it. The medal is hung from a wide silk ribbon and it is in the shape of a hot air balloon. It is pretty, but let me tell you the race was anything but pretty.

Okay, parts were pretty. The location was in Taitung, Taiwan. Known for beautiful mountains and blue/green ocean. We started out in Forest Park, which is just that a park forested by trees. We ran towards the mountains. That means that I ran uphill for at least 3km of the race (I calculated), but it also means that I ran downhill 3km. The rest of the layout was flat along the river basin with the view of the mountains the first half. The last half I noticed rice fields flooded, rows of green tomatoes hanging from their tepee-like frames all while dreaming of the finish line and a cold green tea.

Because…

It was HARD! I mean I had trained for this day. It wasn’t like I just showed up and put on a number hoping that I’d finish. No, I’d spent the last six months building up my stamina for this day – and it was still hard.

It’s funny how your mind sees things differently when your body is in pain. Like those slight inclines turned into steep cliffs and the curves in the road became tormenting hairpin turns hiding the turnaround. Then the last 3km of the race perseverance was a must. No joke. I was back in the park when I saw the 3km marker. Seriously? I still have three more to go? But I’m in the park! My legs were feeling the burn, I had slight abdominal pain, and the sun choose to come out and shoot rays of hot fire at me. I got to the 500m marker and rounded the turn with a sharp inhale. Where is the balloon filled archway announcing the end?!?! I wanted to lay down right there. Another “more mature” runner was in front of me. He and I had been encouraging each other with the Mandarin phrase “Jia you”. With his encouragement we finished together.

It was during the last stretch that I remembered I had written an article comparing  parenting a child with special needs to a marathon with hurdles placed throughout the race. At the time of writing that piece, I had only run a 10k. I used testimonies of other long distant runners to write that piece, but I can now testify that I was pretty accurate.

A few weeks ago a friend reposted a quote on Facebook. She, too, is parenting a child with special needs. It said..

“Every parent plans to raise their child for about 18 years, set them free for 30 years and then hope they come back to help them face the final years of their own life. A SPECIAL NEEDS parent plans to raise their child for 65 years and while doing so also has to prepare for the other 20 or so after they themselves are long gone…. Let that sink in for just a moment and you will begin to understand the drive and determination that many of us have while we are here on earth.”

I don’t know who wrote that. It wasn’t me, but it was definitely the feelings I was having during that hot Sunday morning. Let me explain.

I sometimes feel I’m running uphill. Life is hard and sometimes a struggle. Let me give you a glimpse from our meal times: Jie Jie, who is now 13, but mentally about 4, has to have her food cut up into tiny bites so she doesn’t choke. We have to watch her closely when she feeds herself as she tends to take 3-4 huge bites at a time and proceeds to choke anyway. Then she gets upset with our oldest because he has his elbows on the table, and then she thinks her chair needs a cushion (although before the meal she said she didn’t) or we need a completely different chair altogether. By the time she finishes her meal, everyone else is done and the table is cleared.

I feel my body giving out. It has been reported in health studies that parents of children with special needs age quicker. This is due to the stress. Stress of child choking to death. Stress of child getting hit by a car. Stress of trying to plan for the future. Stress from the IEP meeting or trying to figure out how best to homeschool your child. These are just a few that I know parents deal with on a regular basis. For me my body gave out in the form of a sprained shoulder. I was in physical therapy for about three months repairing the damage, which we believe may have been caused from years of me daily tightening my neck muscles every time Jie Jie would grab me in a super bear hug squeeze. Some days this happens 10-20 times. I have a very tight neck.

I am tired and weary at times.  Many kids with special needs may not sleep all night long. Many parents go about their day on about 3-4 hours of sleep. Plus all the trips to the hospital for therapy, check-ups, and surgeries. Fixing supper? Laundry? Who has the energy?

I can’t see the finish line and afraid I never will. Just like those deceiving turns from the half marathon that blocked the finish line, I can’t see the finish line of parenting. And this is where that quote hit home for me – it can be overwhelming. This is when perseverance has to kick in. There are days I want to give up, but I can’t. I want to finish this life well.

But…(here’s the encouraging part)

We don’t run alone. Just like the other runners in my half, there are other parents who are running this race with me. They may not live in the same town, and maybe not even the same country, but, they are on social media. We are there to support and encourage each other in our knowledge, our joys, and even in our frustrations. We understand the pain and the fear. I am part of a Facebook private group for those dealing with the same syndrome that Jie Jie has. If you are not part of a group, I highly suggest either searching on Facebook or on a search engine.

Spectators.  Running through a small village near the mountain’s edge a few elderly people sat in white plastic chairs cheering us on. In life, I have people who come alongside me and help me. That morning of the race, a dear friend came to our home at 5:50am to be there when Jie Jie woke up so the rest of the family could complete their own race (yep, I signed everyone else up for the 10/5km).

Qualified Help. During the run qualified EMTs on scooters rode up and down the road ready to attend to those in physical need. As a parent of special needs, there may come a time when qualified help such a therapist, counselor, or psychologist is needed. Don’t shy away from mental health help. I just read in a local English newspaper here of a elderly Taiwanese man killing his sister who had special needs because of the stress from the past 30 years of taking care of her. None of us want that. We need to take action before it gets bad.

So, who are you?

  1. A runner? Parenting a child with special needs?
  2. Active spectator? Maybe you’re the spouse, the grandparent, the aunt/uncles, or maybe a friend who helps out. Thank you. Thank you for your help, your encouragement, your presence in our life.
  3. Sideline spectator? You see families, but not sure how to help. You may not even know anybody with a special needs – they are not in your line of vision. I have a challenge for you: First, look – you always see what you are looking for. Second, just smile and say “Hi”. Seriously, just that small act of kindness speaks volumes to us. It’s a reminder that we are human and that you acknowledge that we and our children are humans

Just as the scenery during my half marathon was beautiful, a small act of kindness brings beauty to a harsh world – no matter if that person has special needs or not. I challenge you to do one small act of kindness this week to anyone, but you’ll get extra points and a virtual medal if you do it for a family touched by disability.

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.