NETHERLANDS: A Mother’s Process.

NETHERLANDS: A Mother’s Process.

I worry about you.

I worry about not being the best mother for you.
About not giving you what you need.
I don’t have a manual.
All I have are my instincts, my feelings and my love for you.

No one tells me that I am doing a good job.
But there are plenty of hints and questionable looks suggesting that I am not.

So I worry.

My mind floods with fear that you might need more.
Something, someone to help you flourish.
And I worry that my love for you is not enough.

I carry this load and observe you daily, in silence.
I sigh of relief when I see you smiling and enjoying yourself.

My heart cringes when I see you struggling.
I’m afraid to share my thoughts, my worries.
To speak out about my growing sense of trouble.
About the signs that I see.

Am I seeing signs?
Or am I overthinking?

I struggle with acceptance.
Not because I can’t accept you for who you are.

Others can’t.
Their silent question marks,
weigh on me like judgement.
And I have a hard time shaking that off.

I battle with misconceptions and harsh opinions of strangers.
But when I look at you,
I can tell every little aspect of you that makes you so precious.
I see your infinite worth.

You are like that one flower in the flower bed.
The flower that keeps drawing my eye
Uniquely shaped yet oddly colored.

The flower that I admire the most.

 

This piece is a combination of my own struggles and the struggles of the mothers that I face around me.

Mothers who have a child that is struggling or going through a rough time;
Mothers who have a child  that is developing differently;
Mothers who have a child that has special needs.

I would like to ask you to withhold your judgment or quick advice.
Just see her, and respect her process.
After all she is just like you.
She loves and wants the best for her child.

 

Do you ever worry about your child’s development?

How do you cope? What are strategies that help you?

This is an original post written by Mirjam for World Moms Network

Mirjam

Mirjam was born in warm, sunny Surinam, but raised in the cold, rainy Netherlands. She´s the mom of three rambunctious beauties and has been married for over a decade to the love of her life. Every day she´s challenged by combining the best and worst of two cultures at home. In what little time she has left, she enjoys being an elementary school teacher. Mirjam has battled and survived three postpartum depressions. She enjoys being a blogger, an amateur photographer, and she loves being creative in many ways. But most of all she loves live and laughter, even though sometimes she is the joke herself. You can find Mirjam at Apples and Roses where she blogs about her battle with depression and finding beauty in the simplest of things. You can also find Mirjam on Twitter.

More Posts - Website

Follow Me:
TwitterPinterest

INDONESIA: When Your Child Doesn’t Fit In

INDONESIA: When Your Child Doesn’t Fit In

I still remember that day from last year.

I knew something was not right when the homeroom teacher got the principal, school counselor and some other unfamiliar faces as I sat down in their office.

My gut feelings were right. They pretty much told me my son couldn’t continue in that school for the next school year. In other words, my son got kicked out of school.

We all agree that it is best for your son to go to a school where they can cater to his needs.

I felt anger rise in the bottom of my stomach. Anger for receiving the news on such short notice mixed with a sense of panic of where to put my son to school next.

I blamed myself for this. Not my boy, but me…his mother who should’ve done more investigative work before sending him to the closest school to home. When I picked that school it was because they were the closest to our home. If you are familiar with Jakarta’s traffic, you would understand that I just don’t have the heart to send off my child to school before the crack of dawn like many other children have to do. I thought I had picked the right school.

My son has his challenges. Behavior problems that the school simply couldn’t handle anymore.

My sensitive boy has always been different.

He has been tested for behavior issues before and the results showed that he has no psychological problem and that he is a bright kid. He is not autistic. He is just different. He has difficulties controlling his frustrations which end up in him crying.  In a way, his emotional intelligence is a little behind than the other kids in his classroom. This made life so difficult for him; He hated going to school and would come up with 1001 excuses to skip school. Being different is not easy.

The school in question was an expensive school that cost my family over $2,000 in enrollment fees alone and they do have great programs, albeit very high academic demands. My son used to come home with a backpack full homework folders. We were both frustrated by the volumes of academic pressure he was under.

One of his teachers told me one time that he was very smart but he’s not the type to sit still and listen to his teacher during class. Yet somehow he managed to ‘absorb’ what the teacher was talking about.

He is different.

When my son got kicked out school, his father (my ex-husband) was diagnosed with cancer and I was under unbelievable pressure from work. The world felt so heavy on my shoulders. I went home from that meeting feeling defeated, crushed. I kicked myself for not being a good mother who could stay home with him like the other moms. I blamed myself for working long hours. Maybe that’s why he is misbehaving at school? To protest the life that he has. A father who lives overseas, a mother who works long hour, no friends around his age at home to play with. The mommy guilt wore me down.

I could not afford to put my son back in school straight away so I kept him at home for about 6 months, missing the first semester of the new school year. I was too embarrassed to talk about this openly until now.

It wasn’t until I found a local school recommended by a fellow single mom friend that the guilt evaporated. Located a little further away, I studied their concept and philosophy and after a trial class for my son, we both fell in love with this new school.

A school where he could be completely himself must feel liberating in a way. Where he is not judged by whether or not he could sit still or if he prefers to sit on the floor. The new school emphasizes on the facts that every child has a different combination of intelligence that makes him/her unique.

My son started this January and he couldn’t be happier. I have never seen him got so excited about school. Yes, he still has some challenges but seeing how happy he is has reassured me that we finally found the right school for him. Looking back, I realized leaving his old school was the best thing that could ever have happened to him.

How about you, Moms? Are you happy with the educations that your children are getting?

Maureen

Founder of Single Moms Indonesia, community leader and builder. Deeply passionate about women empowerment.

More Posts

Follow Me:
TwitterFacebookGoogle Plus

CANADA: What Kind Of Mother Am I?

CANADA: What Kind Of Mother Am I?

A few years ago, I went on a retreat for moms of kids with disabilities. I remember being a little skeptical when I signed up: the word “retreat” conjured up mental images of doing yoga, eating nothing but root vegetables, and spending great swathes of time alone in the great outdoors (which is not bad in itself, but it was winter and freezing cold, and the retreat was on the shores of a lake).

The reality turned out to be very different. About twenty of us spent the weekend doing journaling exercises and talking about our lives and the things that were making us feel overwhelmed.

Our stories were all very different, but a common theme ran through all of our narratives: all of us were fantastic at taking care of our families, but we were hopeless at taking care of ourselves.

We were all so caught up in our roles as special needs parents that we never had the time to just be.

A few days ago, while I was frantically scrabbling for the notes I needed to meet a deadline for a client, I came across my scribbled notes from that weekend. The notes included a journal exercise, in which we were asked to write as many sentences as we could that started with the phrase, “I am the kind of mother that…”

It was quite an insightful exercise, and it was quite cathartic. It helped me identify those little gold nuggets that make parenting truly special, as well as the more difficult aspects that needed to be acknowledged and, where possible, changed. Here are the sentences that I came up with, many of which are still true today.

I am the kind of mother that…

…feels guilty about all of the hours she spends working instead of being with her children.

…yells in frustration when things get overwhelming.

…does most of the chores around the house, just so they get done, even though it is exhausting.

…goes to sleep too late and wakes up too early.

…snaps at strangers who stare and say rude things.

…tries to see the positive in even the worst situations.

…takes care of everyone before herself, even though she has her own needs that go unmet.

…blames herself when things go wrong.

…hugs the kids anytime they want, day or night.

…never sends the kids to bed when there is anger or sadness.

…tries hard to be an advocate for her kids in the school system.

…worries about whether her kids are eating healthily enough.

…pretends she needs to pee, just to get a couple of minutes alone.

…sometimes longs for the kids’ bedtime.

…sometimes cleans up the kids’ messes because it’s easier than trying to make them do it themselves.

How would you finish that sentence? What are some of the things that shape your life as a mother?

This is an original post to World Moms Network by Kirsten Doyle. Photo credit to the author.

Kirsten Doyle (Canada)

Kirsten Doyle was born in South Africa. After completing university, she drifted for a while and finally washed up in Canada in 2000. She is Mom to two boys who have reached the stage of eating everything in sight (but still remaining skinny). Kirsten was a computer programmer for a while before migrating into I.T. project management. Eventually she tossed in the corporate life entirely in order to be a self-employed writer and editor. She is now living her best life writing about mental health and addictions, and posting videos to two YouTube channels. When Kirsten is not wrestling with her kids or writing up a storm, she can be seen on Toronto's streets putting many miles onto her running shoes. Every year, she runs a half-marathon to benefit children with autism, inspired by her older son who lives life on the autism spectrum. Final piece of information: Kirsten is lucky enough to be married to the funniest guy in the world. Connect with her on Facebook, Twitter and Instagram. Be sure to check out her YouTube channels at My Gen X Life and Word Salad With Coffee!

More Posts

Follow Me:
TwitterFacebookYouTube

NETHERLANDS: What happened to our son

NETHERLANDS: What happened to our son

coretta_picWhile bombs are being dropped on rescue convoys in Syria again, while moms have to worry about mosquitos giving their children diseases and deformities, while there are moms out there losing their whole family due to war, hunger and hatred, and mothers who have to fight for safety and food for their children every single day, it is with a little reluctance that I share this story.

Compared to their struggle, mine is just minor. Because compared to them, I’m a swaddled, nurtured, spoiled, little Western brat, who can get all the help needed. There is always someone who has it worse then you, and I am eternal grateful to live where I live, and have what I have. Misery has made me humble and grateful and able to see things in perspective.

Yet, our life is no picnic, no walk in the park.

Fygo was born healthy, on April 2nd, just past midnight. It was a C-section, so the doctors could hold it until April Fools was over. I was tired after 33 hours of labour, and stoned out of my mind from the painkillers and anaesthesia. I thought he was UGLY!!!! I wasn’t wearing my glasses, and I’m blind as a bat, and the drugs influenced my judge of character, but I didn’t care, I laughed and laughed. Then daddy came back from counting fingers and toes. “He has 11 fingers!” he said, and he was KILLING me. Fygo happened to have an extra phalanx on the mouse of his thumb, dangling from a small vain. “Ugly” became my kind of “weird”. After recuperating and having stitches, I was brought to my room. My mom was sitting there with our son on her lap, watery eyes, totally in love…. with his red soft hair…. I was able to look a bit more closely, and immediately fell in love with him, too. He was so welcome. His dad and I met in our mid-thirties, on the internet, and if we felt like having a bunch of children together, we had to hurry up.

So there he was, our 11 fingered carrot top. I never expected that, but I love ginger. Lucky bastard, he would steal a lot of hearts, starting right that April 2nd 2006.

He was nervous and anxious from the beginning: we had to swaddle him, otherwise he would wake up from his own movements. But during waking time, he was so relaxed. A little timid, especially around groups of people, like on birthdays, and especially when the attention was fixated on him. A lazy one too: he didn’t turn back when laying on his tummy, he just started moping and then fell asleep with his head on his hands. Or when I put a toy just out of reach, he would try one or two times, and then turned his attention to a closer toy. I could sit him up right, go around the house doing all the work that needed to be done, and come back to find him facing the same way I had put him to: he didn’t move an inch. And yeah, he was a bit chubby and clumsy, but I love that in babies.

Almost 14 months later, his sister Benthe followed. Yiihaa, we could also make girls! Fygo was crazy for his sister. Before saying his own name right, he knew hers. When he spoke of her, he got that dreamy look in his eyes. Asking “Get Benthe?” as soon as I put her to bed.

But we went through a storm at that time as a couple. Some major health issues for my husband, I was losing my pregnancy hormones and fell into depression, money problems, work related problems for the both of us, my eldest got bullied at school and was totally misunderstood, and school blamed it all on him (“he has to grow stronger and fight back!”). And of course, on top of it, though the little girl butterflied through everything, Fygo was getting more and more upset. He changed rooms so Benthe could get the baby room, but we didn’t handle it right. Oh, we did what we could at that time, which was not much: hubby having a hernia, me depressed. But we didn’t talk it through with him, we just did it. He began waking up every night, crying. We couldn’t take him upstairs to our bedroom, because he was so used to his own crib. So we had to go to his room and calm him down there, in which we hardly succeeded. After a while, we were all so tired. We couldn’t do it anymore. We started shouting from our bedroom at him to shut the **** up. There were times that I wanted to smack him, just from frustration and exhaustion. I was the one going to his room all the time, because hubby could hardly get up due to his back problems. We had no family to help us out, mine lives 250 km away, and on hubby’s family we couldn’t rely.

But when he was sleeping, he seemed to glow, he became almost transcendent. We knew he would touch a lot of hearts, he was one big lump of unconditional love.

May 2008. We had a holiday full of Dutch festivities: Queens Day, remembering the casualties of WW2 on May 4th and celebrating our freedom of that war on May 5th, and some Christian holidays as well. My bonus daughter was visiting with her boyfriend, things were looking better, I was looking forward to summer, we put up the pool in the back yard (in which I had to retrieve Fygo because he went under with no safety floater on yet!!!) and were busy redoing the front yard. I was changing jobs and would become a driving instructor. I just had had the interview that day in May, and getting ready to help hubby in the front yard. Fygo was playing in the heaps of sand on the sidewalk, with a neighbour friend. Just when I was about to change my clothes to working clothes, he went with his friend to their house a block away. We always looked out for each other’s children. So we watched them go. Digging, looking, digging, looking, digging, looking. The door opened, the door closed: they were safe.

Only this time, our neighbour was standing with two kids on her bike, ready to pick up her other children from school. This time, she couldn’t bring him back to us. So he went wandering….

After a few minutes, hubby had a bad feeling, like being cut off from something. Where was Fygo? Was he inside our neighbour’s house? I went looking. He wasn’t there. I walked around the block. No Fygo. But still, I was not worried. He was a much seen, much loved personality in the neighbourhood, maybe someone had called him inside, not seeing him accompanied by one of us. Crows were circling the house.

Hubby was going nuts, but I wanted him to stay home in case someone was bringing him back. I got angry at hubby, because if HE felt it, surely I would feel it too! I was his MOM! And more over, Fygo was clumsy, he couldn’t get off the sidewalk without falling to his butt first, and he was startled by passing cars: he would never cross the street.

I went looking by bike, in the direction of a friend that had a dog he loved, crossing the street and passing a pond. Hubby came to the intersection, we talked, and he said he wanted to help searching and went the other way. Still mumbling about him not falling into 7 ditches all at once, I cycled around the pond. There was some debris there, but that was not extraordinary. Almost back at the beginning of the pond, I saw him: floating, face down, his red hair and red shirt waving in the water. My world stopped……

I threw down my bike, jumped into the water, very keenly remembering my First Aid lessons of 15 years before: get him out face down, don’t let more water reach his lunges, no CPR until the water is out, don’t push his heart with your whole hand. I screamed and screamed, and as hubby arrived, so did a complete stranger who was working in one of the surrounding homes, to take over CPR. The son of our physician who happened to pass by, brought his dad, Emergency was called, and in no time the place was crawling with ambulances, medical staff, and people who wanted to have their children to take a good look at this boy dying and these parents crying their lungs out to all the gods in heaven and hell and all their dead relatives to please give him back, don’t keep him there, bring him back, let him go, he’s ours!

Another neighbour happened to be a police officer, and sent them away. She had to restrain herself not to use her baton.

I’ll spare you the details of how many times we were told to say goodbye, the coma, the horrible and continuous muscle contractions, the screaming, the jaw locks with his tongue stuck in between. In the police car following the ambulance to the hospital in Amsterdam, at some point we said: He’s back. He’s going to be okay. At that point, his heart started beating again. And unconsciously decided, that we would make the very best of it, stay positive, not buy into the medical jabber. In both hospital and rehab centre, we were famous for our fatalistic positivism. No one could beat us down. Fygo would NOT die, he would live, and he would do what he always did best: enchanting people, mesmerizing people, touching hearts.

We ended up being in hospital and rehab for 7 months. We slept in Ronald McDonald Homes, with our daughter Benthe. She was the light of our life and really saved us. Rehab didn’t really help, but then again, it was way too soon to see real progress, at least for him: we have seen miracles there, but always for others, not for us. Nevertheless, we celebrated every miracle happening. Being with other parents at the worst of times, needless to speak, we understood each other.

From day one, we said: this will work out for the best, it will be fine, all is well and we will get through this. Also to family and friends, we have been over-optimistic. While the world around us was waiting for our breakdown in the midst of still scary times, we pushed through and found each other. We did everything in our power to keep finding happiness in the smallest things: celebrating the Soccer World Cup and watching the games on a big screen at the hospital with others, drinking way too much beer. Taking strolls through the park. Making passionate love with each other. Being so proud of our other children, because they handled it so remarkably well. Seeing our daughter under the shower, unable to stand yet, sitting there with her bath toys, singing and talking and having fun. Sharing experiences with other parents.

And of course: crying our eyes out for what would never be. Naming all the monsters that we could possibly encounter, the what if’s. Feeling guilty, asking ourselves if we really were not to blame. We never blamed each other though, only that freaking duck he possibly tried to follow.

We were well aware of the situation. We were well aware we could lose him. We were well aware (after realizing and experiencing that waking up from a coma is nothing like in the movies) of the consequences of his condition at the time. We didn’t look forward more than an hour, a day tops. But we could not let reality take over our mood, our faith, our love. So doctors could talk all they want, that harness of positivity was destroyable.

Until rehab….

Fygo had had a nose probe for feeding since the accident. This had worked properly so far in hospital. He never pulled it out, not even in spasms, but when it became apparent for us that he would not start eating by himself soon, we decided to get him a PEG probe (or at least, that’s how it’s called in Dutch; PEG stands for Percutaneous Endoscopic Gastrostomy, meaning basically a hole through his belly, having direct access to the stomach: a literal “belly button”). If need be, we could pull the thing out and the hole would be healed in weeks.

But first, we transferred to a rehab facility, well known for their program for young patients up to 26 years of age, who suffered from brain damage, next to a good hospital where he could get this PEG probe. We were just starting to get psyched about the possibilities there, hearing the miracle stories of other patients and parents. But also exhausted, having a difficult time because Fygo wouldn’t stop crying and screaming and we couldn’t figure out why and couldn’t do anything for him. He was so stiff, we could have laid him between two chairs and use his body to sit on.

We were just starting to get kind of a picture of the future, when the nurse in charge of Fygo accidently pulled out his nose probe, and some of the feeding had gone back into his lungs, causing instant pneumonia. So the PEG surgery was cancelled, and the little guy had to fight for his life again instead. Since then, he has had respiratory problems on and off. Especially in the beginning, when we had all our hope set on the rehab facility and their program, this was a blow.

Fygo couldn’t start the program, which would have been most helpful shortly after the brain damage was inflicted. He was way too ill. And every time he recovered, but every time the team and us made plans to start, he got sick again. He obviously thought differently. We have been in rehab for a long time. We watched patients come in, way worse than our son, see them wake up, regain consciousness more and more, growing into their bodies again, increasing vitality, starting to eat and talk. All patients had changed of course, they were not who they used to be, some “residue” of their trauma was still active, but I could kill for his full consciousness and a strong and healthy enough body to work with for our son.

But never were we jealous. We celebrated each other’s victories, big and small. Seeing other people’s children recover made it bearable for us. We came across a South African neurologist, who had prescribed the sleep medication Zolpidem on a coma patient of his, because he was so restless. To everyone’s surprise, the patient didn’t drift off to sleep, but awoke and moved his finger, after having laid still for 10 years. We tried it. It worked a little. But brain damage due to lack of oxygen is very different from that which is inflicted by trauma (a blow on the head).

We heard of hyperbaric oxygen therapy. This is usually given to people with burn wounds and emphysema or other lung diseases, but clinical research showed more progress in healing brain damage too. Clinical research doesn’t count though, so there was no compensation whatsoever, and the facility that treated patients with hyperbaric oxygen couldn’t treat him anymore, even if we paid for it ourselves. The insurance companies wouldn’t allow it. We could still do it in the US, but it is too expensive for us. Since a few years, the physical therapy that accompanied the hyperbaric oxygen therapy is given here in the Netherlands, but his body is too weak now.

We read into every article, every conversation, every possibility that could help him, with no permanent success. After 7 months of rehabilitation, living in Ronald McDonald Homes and seeing no further progress, we left for home. Fygo could not live with us in the house we rented, and besides, it was too emotional for us to stay there.

We homed Fygo temporarily in a facility with severe multiple handicapped people. He was the youngest. The facility was old, kind of dirty too: it would be torn down and rebuilt, but until then, this was the situation. The other “kids” were noisy, often sick, we went through some deaths at his department, and though the staff did everything they could and with a lot of love, their ways were old fashioned, too. It was horrible to leave him there, and knowing it was temporary kept us going.

It was there that we met with the great guy who is running the school Fygo is attending now, so this period did have some good come out of it. We found another home, away from where we lived, in a much nicer town. My oldest left to live with his dad, a thing he had always said he’d wanted when he was to go to high school, and for us, that was the best. We had to focus on Fygo, and on ourselves.

The new place has a bed and bathroom downstairs, and we got all the help we needed from municipality. They have sponsored so many aiding facilities in and around our house to help us take care of Fygo. They even sponsored a van! Our consultant even asked her whole family to contribute towels and cotton cloths for us. We truly felt welcome in this community, even though they knew we could not give it back, and we are still grateful for that.

We brought Fygo home, still in a vicious cycle of illness, crawling back up, hospitalization, his almost dying, our almost dying, being sick ourselves, depression, addiction, trouble at work, and so on. We didn’t live, but we survived. It was only survival mode that saved us.

Fast forward to this day. Fygo turned 10. He’s a carrot top with a man bun and a grown up body odour now. After his last stay at the hospital this March, we had to have “the talk” again. For the first time in 8 years, he had to be on respiratory support, because just oxygen wasn’t enough. He had pneumonia, and on top of that the flu, that hit really hard here in Europe. What if this happens again: CPR or not? Support or not? How far do we go? How far will the medical staff go? Realise that puberty often means getting sick more, resulting in death. It was a hell of a time again; we went through a lot.

But it helped us say: NO. We don’t agree with that. This is NOT okay. Whatever you say doctor, but NO. NONONONONONONO! This is NOT going to happen. You revive him until he can’t go on no more. HE will show us, and WE will know. And we WILL decide then to do what’s best for him. We are no fools, and we know when to stop. But we’re not anticipating on it, no effing way. We have to live, not think about dying. Besides, can we please stop giving him the milky tube feeding stuff, which only contributes to his slimy lungs?

We decided to go our own way. I make his own food now; I came across a whole community on Facebook that blends normal food for tube feeding. I can add all the good stuff that helps his body grow stronger and give him a more normal intestinal function. And since he does not have to focus on staying healthy, his learning abilities grow as well.

Because, although he can’t sit, hold himself up, let alone stand or walk, has no neck balance, cannot eat or swallow or speak, there is a normal, 10-year-old boy in that battered body of his, that wants to be accepted, play, love, communicate, have friends. He doesn’t think there’s something wrong with him. He feels our moods. He knows when we’re down. He knows it’s because of him, and therefore accepts that he goes on sleep overs every week. But he also knows we love doing this.

Him going to a special class in a normal school, is magic. He learns to work with his eye tracker computer, and in this last 6 months, he has shown us all that he understands everything. He is showing us he can work with that darn computer as well. We see so much of the personality that we’ve come to know in his first 2 healthy years. Communication is key. And he’s still lazy: he knows we know him so well, that he doesn’t really need his computer to tell us. He still will do something one time and one time only, so we make a fool out of ourselves when we want to show other people what he can do. He still doesn’t like crowds or getting attention. He doesn’t want to be filmed while working. He makes jokes and laughs his crooked smile. He still winds women on his little finger with that spotted face and dreamy look.

We KNEW right away, from the day he was born, that he would touch people’s hearts, and he does. Never foreseeing how of course, and if there would be a pill or a procedure to let him be “normal” again, we would gladly take it, but even though the pain and the suffering and the almost deaths and the almost divorces, this life is still worth living, and it has brought us so much more then we could ever experience had we lived a normal life.

Fygo is still not in the clear, and maybe he never will. Right now, his spine is a mess and his lower rib is about to touch his pelvis, and we will have to decide whether he should get surgery or not. Well, actually, not is not an option. It’s more like: when.

He’s grown so fast and whatever muscles he still has are so tight, that his thigh bones are like parenthesis, and completely dislocated. His knees have been broken several times, without clear reason: he’s become fragile from not moving at all. His muscle tissue is nihil. Epilepsy is becoming a daily frenzy.

So yeah, we know we will outlive him. Thank God we will. But until then, we will get everything possible out of this life we gave him, that is our responsibility. And it is not about giving him a better chance of survival through intensive therapy, medication and working hard on recovery. He will not recover, because he already IS the best version of himself. We would be fooling ourselves if we think he could get any better.

But to us, it’s about showing him this beautiful world in a way we all enjoy. It’s about pleasure. It’s about fun. It’s about making memories. We still want that side cart on daddy’s motor cycle, because we know he will love it. We still want to go on holidays and show him other parts of the world, and have him in an airplane. We still want a farm with tons of animals that react on his energy.

We want him to know that whatever has happened, it’s okay. It has to be.

Otherwise, life and all this, is pointless.

Coretta Vermeulen

I'm Coretta, a former teacher. I'm married, and the mother of an 18 year old son, a 9 year old daughter and a 10 year old son, and bonus mom and grandmomship. Our 10 year old son Fygo has brain damage due to near drowning and has no use over his body, except for his eyes and ears. He lives with us at home and visits a special school. We try to live "a normal live" as much as possible.

More Posts

CANADA: Autism – Overcoming Fear Of Water

CANADA: Autism – Overcoming Fear Of Water

Autism boy and his brother at the hotel pool

Autism boy and his brother at the hotel pool

When he was younger, my autism boy was terrified of water. Bath time was an ordeal that involved physically restraining this petrified, screaming child while we sponged him down as best we could. When we had to wash his hair, we would have to take him by surprise and wrap him up like a burrito before he would realize what was going on. These gruelling sessions usually ended with me in tears as I contemplated what I was putting my child through.

A trip to a splash pad one summer’s day a few years ago led to the discovery that although my autism boy hated being submerged in any body of water, he would consent to standing under a spray of water. From that day, our lives were a lot easier: bath time became shower time. My son was not exactly thrilled, but the screaming and terrified looks were replaced with crying and more manageable anxiety.

Although keeping my child clean is less traumatic than it once was, it is still challenging. My son only just manages to tolerate being in the shower for any length of time. Every minute that he is in there, he begs to be allowed out.

And so it was with a great deal of trepidation that I decided to enrol him in swimming lessons this summer. Fear of water or no fear of water, this kid has to learn how to swim. Individuals with autism are twice as likely as the general population to die prematurely from accidental causes. An extremely high percentage of those deaths are drownings.

And so I called the local aquatic centre and told them I wanted to put both of my boys into swimming lessons. I explained about the autism and the fear of water, and expressed my concern that my son would not even get into the pool.

The lady at the aquatic centre said something that I have told myself many times, something that I believe should be a constant mantra for autism parents everywhere.

“We won’t know what he’s capable of unless we give him the opportunity to try.”

These words told me everything I needed to know about the staff at the aquatic centre: that they were prepared to work with my special needs son in a positive and inclusive manner.

On the day of the introductory lesson, I deposited the boys with their instructor and made my way to the observation room, where I leaned forward in my chair and waited anxiously. I knew, at least, that my autism boy would be greatly reassured by the presence of his brother. As I watched, the boys were directed to sit on edge of the pool and dangle their legs in the water.

My younger son readily complied. The autism boy watched him for a few moments, and then followed suit. I held my breath, waiting for a disaster.

But instead of screaming and panicking, my son gingerly lowered himself into the water, to where his instructor was waiting.

I’m sure there was an audible thunk as my jaw hit the floor.

With his hands resting lightly on the instructor’s shoulders, my boy walked from one side of the pool to the other, and then back again. He waited patiently as the instructor went through the same paces with my younger son, and then he did it all over again.

Half an hour later, I met my kids at the entrance to the pool. Both of them were full of smiles, and my younger son could barely contain his excitement as he described how well his brother had done.

Several weeks have passed since then: during this time, we have had a family vacation that included many hours at hotel pools, and there have been two more swimming lessons. Almost overnight, my autism boy has become a water baby. He’s not exactly Michael Phelps, but he can float with support and put his face into the water.

This experience has been a valuable reminder for me to never assume that my kids will not be capable of something.

Have your kids ever surprised you with an accomplishment that you weren’t expecting? Have they ever come to love something they once feared?

This is an original post to World Moms Network by Kirsten Doyle. Photo credit to the author.

Kirsten Doyle (Canada)

Kirsten Doyle was born in South Africa. After completing university, she drifted for a while and finally washed up in Canada in 2000. She is Mom to two boys who have reached the stage of eating everything in sight (but still remaining skinny). Kirsten was a computer programmer for a while before migrating into I.T. project management. Eventually she tossed in the corporate life entirely in order to be a self-employed writer and editor. She is now living her best life writing about mental health and addictions, and posting videos to two YouTube channels. When Kirsten is not wrestling with her kids or writing up a storm, she can be seen on Toronto's streets putting many miles onto her running shoes. Every year, she runs a half-marathon to benefit children with autism, inspired by her older son who lives life on the autism spectrum. Final piece of information: Kirsten is lucky enough to be married to the funniest guy in the world. Connect with her on Facebook, Twitter and Instagram. Be sure to check out her YouTube channels at My Gen X Life and Word Salad With Coffee!

More Posts

Follow Me:
TwitterFacebookYouTube

NETHERLANDS: Looking beyond behavior

NETHERLANDS: Looking beyond behavior

unnamedI stood in the doorway. Uneasy, uncertain if I was at the right place at all. I couldn’t seem to find my way around this hospital. My eyes flashed back and forth, seeking for some sort of assurance. A doctor passed me, I stepped aside to let him pass in the narrow hallway. I read the sign on the door again. It said to report here, but the lady behind the desk was ignoring me.  Her phone conversation seemed to be going on forever. Then she stepped out of the room and passed me. Nothing about her acknowledged the fact that I was there. She held her nose high, her face a mask of arrogance. Her heels clicked away while I repressed the hint of anger that I felt rising in my stomach.

I took a seat and a big breath of air and turned to my phone for distraction. The heels came clicking down the hallway again. Still on the phone, she took her seat behind the desk again. Still nothing. I was completely invisible to her. By this time I was having a vivid conversation with myself.

“Leave it Mirjam. She’s talking to a patient. Maybe she didn’t see you.”
“I am so certain that she saw me! This is not worth getting angry over.”
“But you have to stand up for yourself!”
“No, I’ll just leave it.”

The doctor called me in and ended my inner struggle. I mumbled something about being ignored, but let go of the situation. After my appointment, I sat in the same hallway again waiting for the doctor to hand me the forms for my bloodwork. A woman approached me, she smiled apologetically. Her face was soft and friendly.

“I’m so sorry that I kept you waiting,” she said. “I had a situation and I was in a panic. Are you still waiting for me? Did the doctor call you in already? You don’t have to wait in the hallway, you can wait in the lounge, where you can have a cup of coffee. I’m so sorry. Is there anything else I can do for you?”

As she walked away, I could have slapped myself in the face. If there is anything I have learned this past year from working with kids with special needs, then it is that there is always more then what you can see at first sight. My first rule is: whenever there’s an extreme, look beyond the behavior. There’s always a reason for the behavior. No one yells for no reason. No kid acts out for no reason. At my work when I react to the behavior, I miss out on the real reason behind the behavior. I miss out on a chance to really connect.

I have used this technique a lot in my work. When a kid starts throwing things in anger, I can give a lecture about not throwing things and give a consequence. But I can also start a conversation by saying: ‘I can see that you are really angry,” and find out what the real issue is.
Most of the time I find out that the angry child is feeling sick, had a difficult morning or is feeling anxious about something. Addressing the real issue always deescalates the situation quickly.

I have also tried this technique at home. Whenever my youngest is whiney and starts yelling for no apparent reason, instead of reprimanding her or correcting her behavior, I stop and think a moment and then I address or investigate the situation. I take her by the hand and look her in the eye. “Are you hungry? Shall I make you something to eat?”, “Did you have a rough day? Do you want a hug?”, “You are tired, aren’t you? Do you want to sit on the couch, can I get you a blanket? Shall I make you a cup of tea?”

I haven’t perfected this technique, at least not at home. I have found that at home it is harder to control my emotions. When one of my kids starts acting extreme, my first instinct is still to correct the behavior or to step in and join the madness.  At work it is easier. I can take a step back and think before I react. But I am getting better at this every day. The situation in the hospital has taught me that adults are no different from children in this area. Instead of getting angry, I could have reacted with patience. I could have been more apprehensive. In hindsight, I realize that I did notice that her cheeks were flushed. I heard her say that she was doing her best to fix the situation. I should have looked beyond her behavior.

When I look at the world around me this way, I find that I am so much more understanding, so much more forgiving for people around me. This is why I am sharing this with you today. Because we could all use a bit more understanding, right? The next time your child, spouse, neighbor or coworker starts yelling or overreacts for no apparent reason, don’t join the madness. Take a step back, think, make eye contact or make physical contact and address the situation, investigate.
I guarantee you, you will witness a tiny miracle.

You’re welcome.

Do you think you can use this technique? Have you ever been in a situation where there was more behind someone’s behavior than you thought at first?

This is an original post for World Moms Network written by Mirjam in the Netherlands

Mirjam

Mirjam was born in warm, sunny Surinam, but raised in the cold, rainy Netherlands. She´s the mom of three rambunctious beauties and has been married for over a decade to the love of her life. Every day she´s challenged by combining the best and worst of two cultures at home. In what little time she has left, she enjoys being an elementary school teacher. Mirjam has battled and survived three postpartum depressions. She enjoys being a blogger, an amateur photographer, and she loves being creative in many ways. But most of all she loves live and laughter, even though sometimes she is the joke herself. You can find Mirjam at Apples and Roses where she blogs about her battle with depression and finding beauty in the simplest of things. You can also find Mirjam on Twitter.

More Posts - Website

Follow Me:
TwitterPinterest