5 learnings now you turn 5

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It seems like yesterday, Mathis, the first time I held you in my arms, the 2 days of the perfect dream after your birth: a family with 2 kids, a boy and a girl. It also seems like yesterday, the moment of disbelief, when the paediatrician told me that she wanted to take you for blood tests, to “exclude her assumption of Downsyndrome” – I will never forget those exact words, they were probably her way to gently prepare me for the diagnosis. There I was, all alone in the hospital room, your daddy was bringing your sister to a birthday party, you were gone for the blood test and there I was, a mommy alone with her broken dream: the perfect family.

What is a perfect family anyway? I guess all families have their worries and struggles and there is no intense happiness in life without moments of sadness. Accepting imperfection and embracing difficulties as part of life is something we all have to learn at some point, and you have just made that learning process a whole lot faster for us, Mathis. You have brought us so much more than worries. Above all, you have brought us the simple joy of belonging together.

You will be turning 5 tomorrow and look at you now: the quiet little baby, of whom we had no idea what to expect, has become an expressive toddler boy who loves cars, soccer and Peppa Pig. You have your personality, you got invited to your first kids party this year, you feel part of your little group of toddler friends, just like you feel part of our family. All this makes me so proud and grateful.

As October is not only your birthday month, but also Downsyndrome Awareness Month. Let’s take this special occasion to look at some of your milestones this year and let me reflect on 5 things you taught us.

Celebrate your tribe

IMG_2661We are your tribe, Mathis and you belong here with us. Your family is the world for you and you make that very clear to us. When I drive on the porch, you ask “papa home”? Or when you and I bought the groceries and we head back home, you ask “papa – ee (which means Eline)”. When you don’t want to go to school, you say “vake (granddad)”. It shows how important the family context is for you, and to me it creates that tribe feeling, the feeling of belonging together. Earlier this week, doing a group hug with the 4 of us and singing “vrolijke vrienden (jolly friends)” made me realize the value of such moments: we have to celebrate our tribe, because it makes us feel right where we belong.

 

Routine is holy

Ah routine? There is something self-contradictory about it. When I was a teenager, I thought routine sounded boring. A bit further in my career I discovered that successful people with busy lives have habits that help them to be successful: call it routine. Not boring after all then? People with a disability also need a lot of routine, not because their lives are so busy, but because it gives them peace of mind. Things that are recognisable are easy and less demanding from a cognitive point of view. Mathis needs a lot of routine too. The fixed day scheme in toddler class is helpful, but also at home, he has habits such as always closing doors and always putting his cuddly bear in the same spot in his bed. A bad habit is that he is lazy and still wants to be fed – preferably by mom – instead of eating by himself. Eating moments with Mathis stay difficult. Apart from this bad habit, routine is great, because it structures the day.

10 minutes focus time

IMG_4557Mathis has an extremely short task span, which is a challenge if you want to sit down to learn a new skill. From his special needs teacher and his physical therapist, I have learned that variety in exercises is extremely important to challenge him and keep him motivated. As an adult, when you are in between 2 tasks, you may ask yourself the question: what can I get done in 10 minutes? Well, you’d be surprised. If you set your mind to it, you can really be productive in just 10 minutes. When I see that the time is right, I can sit down at the table with Mathis and do a little word card game with him, to expand his vocabulary and train his recognition of written words. We always choose words that he likes, such as chocolate milk, Peppa Pig or car. With a little help, Mathis will memorize the written words and will show the correct word card with his finger, when I ask him. My 10-minute word wizard 🙂

Playing is learning

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In March Mathis received a vintage Fischer Price play house from some friends of ours. Since then, he plays with nothing else. It is absolutely adorable to see him play with toys from the early 1980s, when I way a toddler. He does role plays with his little Fischer Price family and it is a great way for him to use his fantasy. This independent way of playing is a huge step forward compared to last year. Playing with others is something that Mathis appreciates, but he cannot initiate this kind of “playing together” yet. This will be something new to learn in the coming months. It is s wonderful to hear from his school teacher that other kids tolerate Mathis in their game and even actively involve him. Even more wonderful is the soccer team for kids with a disability here in our neighbourhood. Mathis is the youngest one on the team and he loves it. It is great to see your kid with a disability participating actively in a sport club.

Surround yourself with good people

It has been 5 year now, living with Mathis. In the beginning, I was afraid. Will I be able to keep doing to job I like, to have the kind of fulfilling life that I want? No, it is not always easy and yes, we feel limited sometimes. But we feel we are not alone on this journey. We are surrounded by good people. This might be the most valuable piece of advice: whatever your challenge is, don’t try to do everything by yourself. Find people who are good at what they do and allow help. We have help around the house, we have lovely family and neighbours and parents of friends of Eline, the care team of Mathis has a number of very dedicated people, whose passion is to see kids like Mathis thrive.

So this is it. A reflection on the 5 last years in my life and the 5 first years in yours, Mathis. Not the life I had imagined, but sure a very rewarding journey. I feel grateful that we are surrounded by loving people on this journey with you. Thanks to those people, I can still live the fulfilling life that I want, with time for friends and sports and an adventurous job – I am writing this post from my hotel room in London 🙂  Let’s keep on learning together, my beautiful Mathis. I am sure we still have wonderful times ahead.

What it’s like for a special needs sister

Every year on the 21st of March, we celebrate World Down Syndrome Day. A Day to celebrate the beauty of being different. Every year around this time, I write a little piece to reflect about out life with this special little boy with his extra chromosome.

Attention

He attracts a lot of attention, mostly in a positive way. When I do my groceries, people will wave or say hi to him. In the neighbourhood store, children or people that I don’t even know sometimes spontaneously shout out “hey, there’s Mathis!”. When he runs off while I pay, I ask Eline to watch my purse and I have to chase him and go grab him before he gets hit by a car on the parking lot. Doing groceries with Mathis is always an adventure and good entertainment for the other people in the store. He is only 4, but he knows damn well that he is getting an above-average level of attention. And Eline knows that too.

The story from her angle

This year, I decided to dedicate this post for World Down Syndrome Day to the girl who has to grow up with a special little brother who takes some of her attention away. This post is for my girl Eline. I told her I was planning to write the story from her angle and she was glad to tell me a bit more about how it is to be a special needs sister.

“to make him happy”

“What is it like to have a little brother with Down Syndrome?” I ask her. “Well,” she says, ”in the beginning I didn’t know what is meant to have a disability.” She pauzes and then switches to pros and cons, like she has just leant for a lecture for school. “The good thing is, that he has a good heart. I laugh a lot with him. I also help him to count to 10 when we play hide-and-seek. One of the bad things is that he gets angry very quickly, when things don’t work the way he wants and sometimes I don’t understand why he is angry and it’s not my fault. Also, sometimes I would just like to have some quiet time to chill out and just play on my tablet, but if he asks, I will play with him to make him happy.”

Mixed emotions

This girl is a treasure. It is not easy for her to deal with Mathis and the attention he gets, but she is such a great sister for him. It is no wonder that special needs siblings are sensitive and have a high level of empathy and responsiblity. Special needs siblings are often jealous and feel guilty in the same time. They are jealous for attention, but in the same time feel guilty, because it’s probably not ok to be jealous of your little brother with a disability.

This mix of emotions must sometimes be a struggle for her. Little routines and private moments of attention help to make her feel loved. We take time for a little chat in her bed in the evening, and we make time for long morning hugs (did you know that hugs longer than 30 seconds are really healing?).

Later

Sometimes, she talks about later, and then it get hard for me. Because I don’t want her to worry about later. Sometimes she asks if she will be able to find a husband and how she should combine having children and taking care of Mathis. Then I have to fight my tears for a moment and tell her that we will make sure that Mathis can live as independent as possible, that there are housing initiatives and that there will be people who can take care of him, so she can live her life. He can come and visit her and she can go and visit him, like regular families do. I told her she would probably just need work on her laptop a little bit, like mom and dad do in evenings, to look after his money. I did not think so much about later when I was an 8-year old. So in some way, I think special needs siblings grow up quicker.

True brother-and-sisterhood

Inspite of the burden that Down Syndrome put on her, I see the joy between Eline & Mathis prevailing over the worries. True brother-and-sisterhood is growing here. Now that Mathis is getting older, they become true partners in crime in the house. He enjoys it when she involves him in mischief, and he is so proud to be part of the tricks she is planning. Both of them against the parents. Eline is a hero for Mathis. Priceless.

On World Down Syndrome this year, let’s pay tribute to all those great special needs brothers and sisters out there. They are everyday heroes in their families! #WDSD19

One Day

Tonight is the night before Mathis’ 4th birthday. A good time to reflect for a moment, to look back at our journey with this unusual little boy, our son with Down Syndrome. I am writing this as a letter, to you Mathis.

One Day you will make your own choices in life. I mean that, Mathis. I am convinced that you will be able to make choices about the things you want to achieve in your life. We will be there, at your side, to guide you and to support you, but we will not force anything upon you, just because your IQ is below the average person’s IQ. You deserve happiness and freedom of choice, with respect of others’ freedom, just like anyone else in life.

That day is in the far future – at least I look at it as the far future, because it keeps me young and it keeps you my little boy for a little while. 14 years from now you will be an adult. That seems a long time from now, but when I realize that your daddy and me have been together for almost 2 decades, and when I realize how those years flew by, 14 years suddenly seems much closer.

So sometimes my mind wanders off to the future. And then I dream and I hope and I have some kind of vague plan in my head, a plan to offer you the chances you deserve in life. Sometimes I wonder if there will be a job for you one day, if someone will see the value in you that I see. And sometimes I think I will create a job for you. Build a little business with the talents I have and make room for your talents in there. But then again I think I should not make those choices for you. Because you deserve to make your own choices.

One Day you will learn to read and count. It will take you more time, but we will be there, at your side, to support you. Whether you stay in the regular school, or whether you will find your place in a special needs school, who knows, the future will tell.

One Day you learnt to walk. That was last summer, 2 months before you turned 3 years old. We were so proud of you, because you had been training with your therapist to strengthen your little muscles since you were 6 months old.  One Day you learnt to jump. That was this summer. You make us laugh with your funny dance moves and little jumps, to show off your newly acquired skill.

One Day you were diagnosed with Down Syndrome. That must have been a bit more than a week after you were born. That was not what we had expected, not what we had wanted, not what we had planned. How were you going to fit into our busy life? We thought we were so busy, until life forced us to make more conscious choices about priorities.

Looking back at the months after your birth, the disappointment, the grief, I even feel guilty towards you now for having felt disappointed about you. You sure are a challenge for us, but you also open our eyes in so many ways and bring us closer together with your endless love.

Happy Birthday, sweet little boy!

 

A plea for affordable speech therapy (part 2)

LiesbethenMathis

How to be heard as a citizen in Belgium. Or not.

In August 2016 I wrote to the Minister of Well-being and Family Affairs with a request. I asked if there was anything his Department could do to make speech therapy more affordable for kids with a disability. At that time, Mathis was 2 years old and still too young for speech therapy. But I wanted to anticipate on what was coming.

In general, healthcare is pretty good in Belgium. For normal people at least. I have discovered there is some room for improvement for people with a disability, though. The thing about Belgian Politics is: there are so many levels of governance and so many departments, that you need a higher degree in Pathfinding and Patience to find your way or to be heard as a citizen.

Here is the story in a nutshell (before I switch to Dutch language to tell the rest of the story in the language of my own country and the jargon of this funny political system):

  • Speech Therapy in Belgium is only refunded for people with an IQ above 86
  • Speech Therapy for children with a disability is only refunded if you get it in a revalidation Centre
  • Revalidation Centres are further away from your home, than your Doctor
  • You are forced to centralize all care for your specialneeds child there, to enjoy the refund
  • If you  choose a therapist close to home, there is no refund

Een pleidooi voor betaalbare logopedie

Mijn e-mail aan Minister Jo Vandeurzen, 29 augustus 2016

Hallo Team van het Kabinet van Minister Vandeurzen,

ik ben Liesbeth, mama van Eline en Mathis. Ons zoontje Mathis heeft Downsyndroom. Verder is hij een vrolijke kerel van bijna 2 en zijn grote zus is echt superlief voor hem.

Waarom ik jullie contacteer: jullie zijn het Team van Welzijn & het Gezin binnen de Vlaamse Regering. En als “special needs mom” zoals dat in het Engels zo mooi heet (want in het Nederlands klinkt speciale zorgenmama een beetje gek) heb ik een vraag voor jullie, de vertegenwoordigers van het welzijn van de Vlaamse gezinnen.

Hier komt mijn vraag: wat is er nodig om het beleid aan te passen om de terugbetaling van logopedie bij een zelfstandig logopedist mogelijk te maken voor kinderen met een beperking? Dat zou de levenskwaliteit van gezinnen met een kindje met een beperking verhogen.

Ik doe graag even mijn verhaal:

Ik ben in de eerste plaats mama. Mama van Eline en Mathis. Maar ik ben ook echtgenote van Jochen, voltijds marketeer bij een voedingsbedrijf, blogger, foodlover & sportfanaat. Sinds Mathis geboren is, is voor mij een andere wereld opengegaan. De wereld van zorgen voor een kindje met een beperking, met veel afspraken bij kinderarts, orthopedagoge, kine, het Centrum voor Ontwikkelingsstoornissen, … Ja het is een zoektocht. Al moet ik zeggen dat de Vereniging Downsyndroom Vlaanderen mooi werk verricht, om kersverse ouders van een kind met Down te begeleiden.

Op mijn zoektocht kwam ik dus ook bij het COS (Centrum voor Ontwikkelingsstoornissen) terecht, waar het ontikkelingsniveau van Mathis na een reeks testen geëvalueerd werd en waar ik als mama ook terecht kon met vragen of twijfels. Ik vertelde dat we als ouders twijfelen over de keuze tussen bijzonder onderwijs en gewoon onderwijs, met het M-decreet. Het is een afweging die we zelf moeten maken, hoorde ik. Mathis is een mozaiëk-Downkindje, wat betekent dat de trisomie niet in al zijn lichaamscellen voorkomt. Zulke kindjes hebben doorgaans betere prognoses. Mathis zou in het gewone onderwijs kunnen starten en zal zeker leren lezen en schrijven, vertelde orthopedagoge Anke. Maar weet dat die keuze voor jullie als ouders wel gevolgen heeft, vertelde ze erbij: je zal veel meer zorgen zelf moeten regelen. Zorgen die in het bijzonder onderwijs all-in zijn.

Zorg regelen schrikt mij niet af. Als marketeer ben ik gewend om veel verschillende zaken te regelen en organiseren. Tot nu toe lukt het mij perfect om de kine voor Mathis te regelen, daarnaast ook de activiteiten van dochter Eline te regelen en daarnaast ook nog voltijds te werken. Waarom? Omdat ik omringd ben door fijne mensen van bij ons in de buurt: kine, onthaalmoeder, schoonouders (niet te vergeten). Maar toen Anke me vertelde dat er binnenkort ook logopedie voor Mathis bijkomt en dat die sessies alleen in een revalidatiecentrum terugbetaald zijn, zonk de moed mij een beetje in de schoenen. Want hier in Halen is geen revalidatiecentrum in de buurt. Dat is in Aarschot of Hasselt. Valt niet in te passen in ons huidig leefritme, helaas…

Natuurlijk vroeg ik waarom. Waarom kan ik voor Mathis dan geen zelfstandige logo kiezen bij ons in de buurt, net zoals de kine? Toen volgde de uitleg: de overheid redeneert dat kinderen met een beperking meer zorgen nodig hebben, en ze wil die zorgen op een centrale plek aanbieden. Wel, ik nodig de overheid graag uit om eens een week te komen meedraaien in een werkweek in ons gezin.

Een kind met Down heeft natuurlijk nog meer noden dan logo, maar ergens is het “revalidatie-centrum-denken” volgens mij niet mee met het nieuwe inclusieve denken van het M-decreet. Het M-decreet opent de deur voor kindjes met een beperking in het gewoon onderwijs, maar de medische zorgen moet je als ouder nog wel op de oude manier regelen: in een revalidatiecentrum. Nochtans zou een zelfstandige logopedist die in de buurt woont superhandig zijn. Maar helaas, een zelfstandige logopedist is alleen terugbetaalbaar voor kinderen zonder beperking. “Een oud zeer is het”, vertelde een logopediste van Vzw Stijn me. “Helaas.” Ik zou graag iets aan dat oud zeer doen.

Ja, kinderen met Down hebben noden, maar het gezin waarin ze wonen heeft ook noden, en het kind is gebaat bij een geborgen gezin, en niet 1 waarin ouders moeten rondracen naar een revalidatiecentrum, wat helemaal uit de richting van woon-werk verkeer ligt. Want hey, wij leiden ook nog een werkend leven. Met de geboorte van een gehandicapt kind stond onze wereld even stil, maar we hebben de draad weer opgepikt en werken allebei voltijds. Dat vergt met 2 kinderen een goede planning. Voor Mathis hebben we een schitterende onthaalmoeder & schitterende Bobath-kine, bij wie de 1x per week zelf langsgaan, en die Mathis 1x per week kine geeft bij de onthaalmoeder. Schatten van mensen zijn het. Ik ben de kine en onthaalmoeder erg dankbaar, want ik zou niet weten hoe ik anders alles geregeld moest krijgen. Dochter Eline moet namelijk ook tijdig naar haar hobby’s na school.

Als er individuele trajecten kunnen opgesteld worden om kindjes met een beperking te integreren in het gewoon onderwijs, waarom dan niet voor de bijhorende zorg? Waarom zou die zorg dan toch nog binnen de muren van het oude systeem moeten gebeuren? Elk gezin kiest wat voor hen haalbaar is in het dagelijkse leven, in functie van het kindje met de handicap en ook in functie van de overige gezinsleden. Ons zoontje doet het congitief goed genoeg om te starten in de gewone school, dus ik zou afbreuk aan zijn capaciteiten doen, door hem te droppen in het bijzonder onderwijs, omdat het zorgpakket daar all-in is, dus makkelijkeker voor mij als ouder. En het zou afbreuk aan onze dochter doen, door wekelijks heen en weer te moeten gaan rijden tussen huis en revalidatiecentrum en weinig quality time met haar te kunnen doorbrengen.

En op het einde van de rit kunnen kinderen met een beperking die logopedie volgen, beter praten en zij nze dus beter inzetbaar voor uitvoerende taken op de arbeidsmarkt. Ik zou niets liever willen, dan dat mijn zoon opgroeit tot een zo zelfstandig mogelijke jongen, die in deze samenleving ook zijn steentje kan bijdragen, op zijn niveau. Daar kan betaalbare en toegankelijke logopedie toe bijdragen.

Kan het Kabinet van Minister Vandeurzen met mijn vraag aan de slag? Ik zou enorm dankbaar zijn.

Lieve groeten van een geëngageerde mama,

Liesbeth

Het Kabinet Vandeurzen reageerde een maand later op mijn e-mail, om mij door te verwijzen naar het Kabinet van Minister Maggie De Block. Mijn goesting om hiermee verder te gaan was weg. 2 jaar later is er niets veranderd. Nu we logopedie moeten opstarten, moet ik kiezen tussen de stress om 2x per week naar een revalidatiecentrum te rijden 25 km verder, of de zorg bij ons in de buurt te regelen voor een meerkost van 1000 a 2000 eur per jaar.

A soft bunch of simplicity

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Kids with Down Syndrome are very soft. On the outside and on the inside. They feel soft because of their low muscle tension, called hypotonia, and they are also soft in their behaviour to others. They naturally have a lot of attention for how other people feel. Their cognitive skills may be limited, but their empathic skills are a great asset.

In the midst of the opinion storm about the NIPT test (*) in 2017, I remember one opinion piece written by a mom of a boy with Down Syndrome, who regretted that less kids with Down Syndrome will be born, since the NIPT test is now reimbursed by Belgian healthcare service. She wrote that having less citizens with Down Syndrome would be a loss for our society, because they bring softness and warmth in a society that is getting harder and more complex. Quite a different angle than seeing people with a disability as a cost on our tax system.

In her own way, this mom was reflecting about the condition of her son in the context of our society. It might be typical for us “special needs moms” to do this, to look ahead to what is coming, to try and see the broader picture. In one of my previous posts I wrote about my hopes for life-long inclusion and how people with a disability also deserve the chance to work with their talents, just like everybody else.

The thing that stayed on my mind, was the beautiful description that this mom wrote of her son: “He is a soft bunch of simplicity.” Those few words are so beautiful and just how I see Mathis. He is soft, cheerful, thoughtful and he sees happiness in simple things. Our kids with Down Syndrome and their soft side can indeed bring a beautiful balance in our society that is getting more complex and focused on efficiency and productivity.

Let’s embrace softness on World Down Syndrome Day

21 March is World Down Syndrome Day: let’s embrace softness & simplicity and let’s see the beauty in being different. It is the gift of people with Down Syndrome to our society.

Don’t forget to wear 2 different socks on 21 March 😉 #WDSD18 #differentisbeautiful

(*) NIPT = Non Invasive Prenatal Test

Colourful kids, Colourful moves

Did you know

that it is possible to talk about colours with gestures? Last week Mathis & his friends learned about colours in school. The usual 2,5 or 3-year old kid can name the colours red, blue, yellow and green. For Mathis this is different. Even though he might understand the notion of colours, he cannot pronounce the words. So how was his teacher going to let Mathis express himself about colours?

That’s where creativity comes in

Right. Raising or teaching a kid with special needs requires patience (lots and lots of patience) and creativity. That’s exactly what Karen is good at: Karen is his coach, who comes to Mathis’ class every Friday. She is a teacher in a Special Needs School and she comes to the regular school every Friday morning to help Mathis with learning and to help his teacher with tips to involve him in the lessons on his level.

So here is what Karen did to teach Mathis colours: she made beautiful cards, each of them showing the colour + several items in that colour + the corresponding SMOG gesture. SMOG means “Spraakondersteuning met gebaren” (Gestures to support language). You might not believe it, but there are actually gestures to show the colours red, blue, yellow and green.

Coach Karen has been working on SMOG gestures consistently since November and we notice how Mathis picks them up quickly and is expanding his ways of communication. Heartwarming. The other beautiful thing about having Karen in the classroom, is how she helps to create a bond between Mathis and the other kids: the SMOG gestures are fun for the other kids to learn too, and at the same time Mathis feels they speak the same language. He feels understood & accepted.

Feeling understood and accepted: this is what inclusion is all about. It makes me happy to see my special little boy with his funny gestures being accepted in his little class group. Using gestures & body language has received a whole new dimension, since Mathis is in our life.

What about you?

Do you use gestures to better explain what you mean? It’s a great feeling to be better understood. So hooray for gestures and body language 😉

21 March World Down Syndrome Day

Every year we celebrate people with an extra chromosome on 21 March. Because it’s ok to be different. Because people with Down Syndrome are wonderful persons who are capable of more things than you would expect.

On World Down Syndrome Day it’s a tradition to wear 2 different socks 🙂 A funny statement to show that being different is ok! #WDSD18 #rockthesocks

DS Awareness Month 17: Hopes, Dreams & Ambitions

October slided into its second half already, which means Down Syndrome Awareness Month is past halfway. It has been a very intense month with little time for writing, but this autumn Sunday is the perfect occasion to get back to writing.

What an intense month it has been. Mathis started going to school mid September. We celebrated his 3rd birthday with a lovely family brunch, I travelled to Berlin for the last time with my BeARTENDER buddies, I left my job at Dirafrost to start a new adventure as Marketing Manager at I3 Technologies – a digital marketing greenfield for me & the team to spread our wings. Also, we welcomed lovely little Lucy to the family on 17.10.17 (beautiful date, right?) and I am so proud to be her godmother.

These intense moments put Down Syndrome Awareness month a bit out of focus. There are more awareness campaigns in the US and the UK than in Belgium, but let me take this opportunity to bring it in the picture in our country too.

How our journey started

Our journey with Down Syndrome started on 11.10.2014, 2 days after Mathis was born. When Mathis was born, everything seemed perfect. He was the cutest newborn baby boy. 2 days later, when I was about ready to leave the hospital, the pediatrician came into my room to tell me about her suspected diagnosis. I was alone, husband Jochen was bringing Eline to a birthday party. The news came as a slap in my face, totally unexpected, so unreal. Bye bye picture perfect. Hello uncertainty, doubt and fear. We waited for a week for the final blood results to confirm Mathis’ diagnosis. We were suddenly special needs parents. How were we going to handle that?

But hey, look at us now! Look at Mathis now! Look at the progress he made this summer: in 2 months’ time he learned to walk alone and say his first words. He learns at 3 what other kids learnt at 1 year old, but we are as proud of his first steps, as we were of Eline’s first steps. The difficult first year made room for a regular family life with lots of happy moments.

Here are the kids & me at the baptism of nephew Marcel in Brussels, February 2017 (*)

Questions for the future

We are enjoying Mathis’ childhood time, but someting I think ahead: how will his school career continue? Will it be possible for him to stay in the same school as Eline? We are lucky with his lovely patient teacher this year, but what about next year? What if one year a teacher won’t put up with him? What after school when he becomes an adult? Will he get a simple job that will make him feel happy and feel he is contributing to society? Where and how will he live a quality life, with respect for his independence (as far as possible) and without being a burden on his sister?

Lots of questions, which I decided we will tackle when needed. They are not keeping me up at night, because I want to enjoy our little family and don’t want to let worries prevail. I believe there will be difficulties, but I also believe that opportunities will arise. Sure there is room for improvement to better integrate people with a disability in our society, but it will take time and courage.

About life-long inclusion & talents

There is a series on Belgian TV since last month, starring people with Down Syndrome: Tytgat Chocolat. Sure, this is a step in the right directio, because it shows people with Down Syndrome in a way that most people have never seen. It shows that they also have hopes, ambitions and dreams. However, the actors with Down Syndrome in Tytgat Chocolat were not paid a wage like the other actors. They received a kind of allowance. After the filming of the series, they returned to their day center.

So if there is 1 thing I would like to focus on in this Down Syndrome Awareness Month, it is inclusion in all aspects of life, also in worklife. Inclusion should not be limited to the school years. I recently met a woman with a 34 year old son with Down Syndrome. He is capable of doing different kinds of work. The daycare center noticed that and gave him a tight schedule with different kinds of jobs: bringing the mail around, helping to serve breakfast, helping in the bakery, helping to serve lunch & clean up afterwards. All without receiving a wage. The poor guy ended up with a burn-out, told his mom. He stopped working in the daycare center since then. His mom would rather have him not working at all, than to get stressed. Understandable.

At the same time, I think it is a missed chance. It is a chance for a disabled person to work and earn a wage, on condition that the job is well-defined and is a good fit with the person’s capabilities, talents & personality. Everyone should have the chance to do something that they are good at and that they like, to make a living. It’s all about working with your talents. People with Down Syndrome have talents too. They are not the smartest, but their warmth and happiness would make them perfect hosts at a bakery or coffeeshop or in the hospitality sector. Just thinking. This might be inspiration for policy makers.

Just smile 🙂

If you feel inspired by Down Syndrome Awareness Month, just smile when you see someone with Down Syndrome. Don’t feel uncomfortable, they are just pretty ordinay people with a very warm heart.

(*) Thanks to my brother Joris & my sister in law Liesbeth for the beautiful pics taken during the baptism ceremony.

Decisions by the heart

In this blogpost you will read how I got started with Music for Life (MFL) 2 years ago and you will find out what a Belgian non-profit organisation could do with the money we raised. Oh yes, and of course I could not resist to share another picture of our little boy on his first day of school, last Friday. Look how confident he walks in the playground. This mom is so proud and thankful for the people who surround him with the best care. Enjoy the reading 😉

Are you a slow or a quick decider? A thinker or a doer? Do you decide by the ratio or by the heart? Planned or impulsive? I am a bit of both. In general, I plan everything I do well in advance. My agenda consists of blocks of time that I dedicate to tasks, meetings, appointments. It’s a typical working mom habit: choose wisely how to dedicate time. Did you notice that I use “dedicate”, not just “spend” time? Because time is so precious.

So, in this meticulously planned agenda I try to keep some space for the unexpected. I love when unexpected but pleasant things come on my path. That’s the other side of me: still impulsive sometimes (especially when I shop 😉

That’s also how I got started with Music for Life, 2 years ago: my impulsive me woke up on a morning in late November. It was going to be a Ladies Day: mom, sister & me took a day off work to enjoy together. On that very morning, I heard on the radio that charity actions for Music for Life were in full preparation. Immediately I felt that vibe: I want to do something too. I want to join people and work together for a very personal good cause, dear to my heart. It was a decision by the heart.

Very spontaneously, we became a team with some family & friends, called “Koekjes & Kaartjes”. In 2015, we sold home-made cookies and little gift cards and we raised 2000 eur for Downsyndroom Vlaanderen. 2016 was the 2nd edition, when we did the same concept and raised 2600 eur for another Belgian non-profit organization, DAB (Dienst Ambulante Begeleiding, who provide counseling at home to families with kids with a disability).

Raising funds & seeing results

So, almost 1 year later, I thought it would be great for everyone who contributed, who helped, who bought cookies or cards to hear what happened with the money we raised.
I have been in touch with the team of DAB during the year, on the one hand for advice to stimulate Mathis’ development and behavior, and on the other hand to keep in touch about their investments with the money we raised.

And look what a beautiful e-mail I received last week: a heartwarming thank you message with pictures of happy kids’ faces and beautiful new educational material for the DAB team to bring new inspiration and stimulation to families with a special needs child. On the picture next to Mathis, you can see a beautiful Haba game. Next to new educational material, the money from our action was also used to work out potty-training programmes, that are much needed for kids with a disability.

It is beautiful and rewarding, to see the tangible contribution that we made with our Koekjes & Kaartjes Team. I am playing with ideas for this year’s edition. Let’s see what and if… soon.

What DAB does

Give information, support and educational advice to families with

  • a risk-child due to early birth or illness
  • a baby or toddler with a developmental disability (like our boy Mathis)
  • a child with a mental, physical or a multiple disability

Always with an eye for the possibilities & limits of the child and the rythm & habits of the family.

More info about DAB activities (in het Nederlands): click here.

New Beginnings

How long has it been since you felt new? New can mean many things. New in its most obvious sense, as in “happy with the new sweater you bought”. Or new, as in that fresh feeling you get after a good workout or some good running. New, as in “reinventing yourself”, after a difficult period, after overcoming something that you did not expect to happen to you. New, as in “bursting with fresh energy after a relaxing holiday.” New, as in “energized by a good idea and determined to make it happen.” I could fill an A4 with different meanings of new.

Newness has good vibes. It stands for chances, for hope, for positivity. That new sweater can make you look great on many occasions, the fresh feeling after running can make you feel good, the acceptance of a new situation can help you see an end as a new beginning with new opportunities (*).

So this post is about new beginnings, because I am seeing new beginnings around me in many ways that are good.

Holidays brought new appreciation

Today was the first new day at work after 3 weeks of holidays. Returning to the office with fresh energy makes me ready for the upcoming busy period at work. Those 3 weeks of holidays have been very good for me and for us as a family. A week to relax in France and 2 weeks at home were really what we needed and it brought a kind of new balance in our little family.

It may sound simple, but during those 2 weeks of holidays at home my husband and me got a new sense of appreciation for each other. We argued less and we got along better. I realize that the daily hectic of worklife influences our behavior at home. So we are going to hold on to that level of appreciation that we reached now.

Eline

2 weeks at home gave me the time to think about a new style for Eline’s bedroom. She is turning 7 next month, so the time has come to turn the cute toddler room into a “big girl’s room”. Together we browsed through kidsroom & interior websites and we saved some ideas on a Pinterest board especially for her. Taking the time for long breakfasts together and chatting about the ideas, making a wishlist of new things for her room: I really enjoyed that. The determination of her choices, the twinkle in her eyes: priceless.

New beginnings also for Mathis

IMG_0058

Very new: we have to get used to Mathis starting to walk around the house. He still loves crawling and he crawls really fast, but at 2 years & 9 months he has finally gotten strong enough to walk. He is still using the support of cupbards and chairs, but he is getting where he wants to be. Alert alert: little hands trying to grab anything on tables or cupboards 🙂

Mathis has really made progress on several levels in the past weeks. He is doing well on potty training and he is starting to talk more. I am so happy to hear him say mama mama mama. 3 weeks close to the kids means that they have gotten a bit spoilt with attention, so I heard “mama mama mama” every time I left the door. So cute!

He is picking up more and more SMOG gestures (**), that support his and our speech. He is now able to tell he want to eat more, he can say grandma, cookie, drink, pee. The most wonderful thing that he learned to say lately, is the name of his sister. He calls Eline “ee” (vowel) /iii/ (phonetic) . Seeing him ask her attention is just absolutely adorable. It is also a relief to see he is finding ways to express himself and to get things done.

More new beginnings to come: Mathis will be starting in regular toddler school after the Autumn holidays, around 1 November. After a rather difficult start of the preparatory meetings with the school in March, we finally got the ok on his file for support by mid June. Good news. What’s more, his teacher got in touch with me via Facebook and asked if it was ok for her to come and visit us to get to know our little boy. Man, I was so happy to read this message. Of course she was welcome! She came over the next day and she turned out to be absolutely wonderful. Mathis is going to be in a class with 11 toddlers and I can’t wait to see him there, happy in the group, imitating other children and just happy to be part of the class.

So newness all over, if you ask me. Oh yes, July is Sales month, so obviously I bought myself some new clothes too 😉 Because next to my special-needs-mom-role, I am just a regular 37-year old woman, who is happy to score that new t-shirt and cardigan. Belgian design, I keep teling myself, so I am basically just supporting a new Belgian label (lame excuse, I know 😉 I just love Marcel knitware).

What about you?

Did you treat yourself to something new? Even if you did not buy anything, I bet there is something you did or thought about that can make you feel new & good about you. Give it a try!

(*) an end is a beginning of someting new, inspired by Life on Sneakers, a lovely book by Evi Renaux, who had to reinvent herself after suddenly being confronted with serious health problems

(**) SMOG is a Dutch abbreviation for SpraakOndersteuning Met Gebaren = Speech Support with Gestures

Steps to Shape the Future

Today’s post is about regulation or the lack thereof. I never cared much about regulation but now I do, because my son’s education is concerned. Boring stuff you think? Yes, partly true, but take a read. You will discover how different people react in times of uncertainty and how to deal with situations that you don’t fully control.

Immobilists & Entrepreneurs – Part 1

In times of legal uncertainty, it is interesting to see how different people react to this situation. There are the ones who use it as an excuse for immobility. Let’s call them the immobilists. They are afraid of the unknown, they see the risks and not the opportunities, they find it difficult to handle change, they much rather prefer things to stay the same, because it is easy to do what they are used to do.

And then there are the people who take advantage of the uncertainty, to shape their own solutions. Let’s call them the entrepreneurs. They have an open mind, they find solutions for problems, they are not afraid of difficult things, they see the opportunities much stronger than the risks, because a need that can be fulfilled is a market opportunity.

About legislation, a gap & interpretation

Today I am facing a situation of legal uncertainty in the field of support for disabled children, who go to a regular school (not a school for specialneeds kids). Since 2015, a child with a disability is allowed to go to a regular school in Belgium, if the child is capable of attending classes by means of “reasonable adaptations” by the school. There is, however, no clear definition of what is “reasonable”. The government leaves this up to every individual school to decide. Some room for interpretation there.

The legal set of measures about the allowance of disabled kids in regular schools is called “M-decreet” (M-decree). M stands for measures – nomen est omen 😀 It sure was no marketer who invented that name. Unfortunately the famous set of M-Decree measures does not foresee any measures to regulate the support for children with a disability, nor training for the educational staff, nor guidelines for the schools to handle the extra support. Ha. Take that specialneeds kids. Ha. Take that schools. A gap in legislation. Up to you to figure out what is “reasonable”.

Immobilists & Entrepreneurs – Part 2

“You see, madam,” said the immobilist, “the M-decree is just a way for the government to save money.” The government wrapped the M-decree in the nice & colourful paper of inclusion. A beautiful colourful thought, I still believe. The problem is that the budget for the support still sits in the special needs schools. So the decree is in vigor, but the budget for support is not (yet) there. Legal uncertainty.

Yes indeed, Mrs immobilist, there is no official decision about support for these kids yet, but let’s not sit and wait. Let’s think about solutions that are reasonable for all parties: the specialneeds kids, the teacher, the class, the parents.

After a 1st disappointing meeting, where Mrs immobilist did too much talking about “the old days”, I started making phonecalls to special needs schools: presenting me & my son & asking what had to be done to file for support. The purpose would be to get someone of their team to support Mathis in class for a few hours per week as of November. The first 2 special needs schools I called were very helpful, but still said different things about the procedure to follow to file for support.

Ah, the Disability Jungle… Fuzzy meetings with NO outcome, Belgian administration. Get real please. Can we talk solutions please?

Moving in the right direction

Finally Friday last week shed a different light on the situation. I spoke to another special needs mom, an Entrepreneur in my eyes. Of course we talk: it makes no sense to do things alone, if others are facing the same situation. She had pretty good news: the school is going to file a request to get a permanent person for support for several specialneeds kids in the school. This was like 180° change versus the Immobility Meeting I had just 1 week earlier. So right now, it looks like things are moving in the right direction.

Just like Mathis: also moving in the right direction: he is starting to enjoy walking. And he is enjoying drawing & starting to make puzzles. Inspite of his slow motor skills, this boy is getting school ready!

It will probably be a bumpy road, but I am ready to accompany him and to take every step it takes. We will take this opportunity to help to shape the legal framework for kids like Mathis to get the support they need in school. Let’s embrace the difference & let’s work together with schools & parents to make this a beautiful learning journey for all.

6 April 2017 brings good news!

What a coincidence: in the News just the morning after writing this post: Belgian Minister of Education frees up a budget of 15,2 million EUR to support children with special needs in regular schools. Things are moving in the right direction indeed!
Click here to read the article: 300 nieuwe leraren voor M-decreet.