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.
While 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.
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.
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.
I wake up in the middle of the night needing to use the bathroom. I tiptoe past my son’s bedroom, but in spite of it being about two in the morning, he is awake.
“Mommy!” I hear him whisper.
I go in, thankful that he finally understands the importance of not talking out loud while the family is sleeping. As I tuck him in, he reaches a hand up and touches my face.
“Lie down with Mommy on the bed,” he says, in his peculiar speech pattern and his even more peculiar voice that is teetering between boy and man registers.
Knowing that he will not get to sleep again without a cuddle, I promise to be back. I quickly use the bathroom, return to my son’s room and lie down beside him. We lie there for maybe a minute before he whispers again.
“I love you, Mommy.”
“I love you too,” I reply.
“Good night. Have beautiful dreams,” he mumbles, giving me a gentle but unmistakable shove. By the time I’m walking out of his room, he is fast asleep.
As I make my way to my own bed, I think about my son, about how far he has come and how far he still needs to go. He is twelve years old now, sprinting down the home stretch toward his teenage years. Nine years ago, almost to the day, he was diagnosed with autism.
Back then, when he was almost four, the only functional words in his vocabulary were “juice” and “pee”. He needed assistance with every single aspect of his daily living – toileting, getting dressed, eating, brushing teeth. Grocery store meltdowns were common, and washing my son’s hair could reduce him to a state of terror. Haircuts were absolutely out of the question.
Today, my son talks. Not a lot – not enough to have more than the most rudimentary of conversations – but he talks. He makes requests using full sentences, complete with “please” and “thank you”. He expresses emotions and makes jokes. He can pick out his own clothes, take a shower more or less by himself and even washes his hair. He hates it, but he understands that it has to be done. He can have haircuts now, even though I am the only one who can administer them and he keeps bunching his shoulders up.
As I look at him now and try to see into the future, I have no way of knowing what he will be capable of nine years from now. On the one hand, I don’t see him being able to live independently. He still lacks many life skills and, like many people with autism, he does not have an innate sense of danger and he does not know how to keep himself safe.
On the other hand, nine years ago I would not have foreseen the progress that he has made up to this point. I would not have thought that a kid who once had two usable words would be saying things like, “Have beautiful dreams”. So who knows what another nine years will bring?
We will only find out by continuing to steer him out of his comfort zone and into unknown territory.
How do you deal with challenges faced by your child? Do you wonder what your kids’ futures look like?
This is an original post to World Moms Blog by Kirsten Doyle. Photo credit to the author.
My mom was visiting with us in Kenya recently, and I decided to take her to Heshima’s Dignity Designs, a specialty jewelry shop I had heard great things about. I thought it would be a fun mother-daughter day out, and we could buy some lovely African beaded jewelry. What I didn’t realize was that we were about to learn about an inspirational program supporting special needs children in Kenya.
When we arrived at the shop, we met Heshima founder Tracey Hagman. She asked if we would like a tour of their children’s center before we started shopping, and we said, “Sure!” What we saw there touched and inspired us both.
Many special needs children in Kenya live a life with little dignity, and even less support. Heshima, meaning “dignity” in Swahili, provides assistance and services for Kenyan children with special needs, as well as their mothers.
Kenya sorely lacks institutions providing services for children with disabilities. Many special needs children in Kenya are kept at home, out of school, sometimes hidden from the community due to stigma. Those that do attend public school often languish, neglected, without any targeted assistance. Very few special needs children ever have the opportunity to receive the special education or therapy they need.
Heshima seeks to meet the needs of such children – children with cerebral palsy, cognitive impairment, physical and learning disabilities, epilepsy, and other conditions.
Heshima provides meals, basic education, and specialized therapy (physical, occupational and speech) to the special needs children in their center. Heshima also supports the mothers of each enrolled child, providing them with training, employment, and much-needed income. Heshima moms are employed as water distributors, jewelry makers, or as assistants within the Heshima program.
We got a chance to meet many of Heshima’s children, moms and staff during our visit that day. The center is beautiful – bright, cheery, and full of brightly colored toys, bean bags, and books. The children were so HAPPY. As we passed through the center, some children were contentedly napping. Other children were starting their therapy sessions, using both locally made and imported devices to help the children develop their gross and fine-motor skills. Still other children were sitting in class, working on their handwriting or listening to stories. It was a warm, welcoming space full of smiles and cheer. I felt good just being there.
After we toured the center, we made our back to our original destination – the Dignity Designs jewelry shop, and picked up several gorgeous pieces. The proceeds from jewelry sales all go towards salaries for the Heshima moms, giving them the income they need to support their family. The jewelry is truly beautiful and unique!
I was so inspired to see the work that Heshima is doing with these wonderful kids. These children deserve love and support. They deserve to be seen for who they are as individuals – not as labels, stereotypes, or stigma. Their moms deserve to make a living wage, and to connect with and get support from other moms going through the same challenges. Thanks to Heshima, they’re getting all this, and more.
If you would like to support the work done at Heshima, you can visit their website to make a donation. The center operates almost exclusively on individual donations, and relies heavily on the support of people like us!
Are quality services for special needs children available where you live? What is being done locally to support people with disabilities in your country?
This is an original post to World Moms Blog by Tara Wambugu. Follow Tara and her family’s adventures on her blog, Mama Mgeni, and connect with her on Facebook, Instagram, and Twitter.
Photo credits: Heshima, used by permission.
Does that mean I get a cane now?
And a dog?
That would be sooooo cool!
She was excited, my precious one. She skipped and danced, as we left the hospital. I had just explained to her, in careful wording, that she was now officially ‘disabled’. At the last tests, her eyesight was down to ten percent, which was substantially less than a bystander would judge. Most people don’t even notice she is 90 % blind.
She compensates a lot, the therapist confirmed. She constantly moves her head around to get a full view with the remaining ten percent. Her eye-brain-connection is still flexible and easily adjusts. She even unconsciously practices echo localisation. The scientist in me finds thàt extremely cool.
The overwhelmed mother, on the other hand, was nearly in tears. I had known what was coming. I had heard the forecast. I had seen the clouds. But still, the thunder unsettled me.
Disabled. The phrasing seems so inappropriate for her. She is so able!
She is in first grade now and struggles to learn how to read. Focusing on the letters is extremely tiring for her. She keeps losing track of the word she is reading, as it disappears in the 90 % cloudy view. She literally has to press her nose next to the word she is deciphering. Writing is even harder, with minimal sight to guide her hand.
But still, she keeps trying. For the last month, she has worked twice as hard as her classmates. She has begged for extra homework and practised until her neck was hurting too much from bending down. For now, she just craved to learn how to read.
So that’s what she did. Last Thursday, she passed her first reading test. Yes, she was far slower than her peers. But she passed. I’ve never been prouder.
As of today, with her official label of disabled, she is entitled to extra support, both at home and in school. We’ll get her a special, tilted desk to spare her neck. Binoculars to keep track of the writing on the board and other magnification aids. Learning will become easier for her from now on.
And no, she won’t get a cane and a dog just yet.
She wasn’t even disappointed and kept skipping, not noticing all the people who had to jump aside to let her pass.
I don’t need them anyway!
Instead, she asked for eye make-up.
You know, because the doctor said I have such lovely eyes.
She chose yellow, which turned golden on her skin.
Sunny clouded eyes.
How do you talk with your child about disabilities? Do you recognize the lightness of heart a child can deal with it?
This is an original post to World Moms Blog by K10K @ The Penguin and The Panther.
The picture in this post is credited to the author.