What if your best isn’t good enough?

Almost 4 years since my last blogpost… it’s been a long time and a lot has changed. We’ve moved a couple of times, I’ve lost about 23 kg and we’ve gained a stack of diagnoses.

So now I am officially a special needs mum who has had to learn loads about autism, genderdysphoria, myalgic encephalomyelitis (ME), kyphoscoliosis, asthma and hypermobility.

So far, it hasn’t been easy. We are still learning of course and that won’t stop because all of it is ongoing. I guess it’s not so hard to understand that my life has been rather hectic while we are getting quite knowledgable on the different conditions.

Being a special needs mum

This morning the Dutch radio channel on my phone was playing ‘Je hoeft het niet alleen te doen’. This is Dutch for ‘you don’t have to do it on your own’…

Every time I hear that song or others with a similar message I tear up these days.

No, I don’t have to do it on my own… theoretically that is.

I don’t have to do it on my own, but that’s easier said than done if you are seriously lacking a network nearby that you can rely on.

A friend posted a blogpost (this one) on Facebook yesterday and it is so true that being a special needs mum or dad is a lonely and isolated existence. And it is even more true for those who have multiple special needs kids and/or a child with a special need that is rarer and/or less (or simply not at all) understood.

Over the years I’ve surrounded myself with people I thought are most likely to understand our struggles, but I’ve learned that people will never fully understand what we are going through. And some are not even willing to try and understand.

Every special needs child is different and even when there is the same diagnosis on paper they will still differ immensely because of course they are, besides their diagnosis, unique individuals. Also, most disabilities, symptoms or characteristics can vary greatly and there are of course cases where there is more than one special need and they are not always diagnosed.

Do you want to be supportive?

Then listening to the parent, taking it seriously and believing what is said is a good start.

Dealing with ‘good intentions’ is another struggle. When people think they are helpful by suggesting ‘new’ ways to deal with your child and you either have tried those things already or you just know it won’t work.

It may come across as being unthankful or dismissive and you might even think that your help is not appreciated, but sometimes there just isn’t headspace for justifications and explanations. Most (if not all) special needs parents have become the experts in their child’s special needs field and have read or heard it all before. They just want you to understand that they want to be heard and that they don’t need you to solve anything to be supportive of them.

Don’t get me wrong, brainstorming with people who genuinely care and are in the know (because they’ve listened about the issues in the past) can be very helpful, because that might produce new ideas. However, talking to people who think they’ve got the answer is not.

It can leave the special needs parent feel like a failure

We know we are doing the best we can, with the information that we have and within our own ability, it never feels enough. And knowing that is already really distressing.

Most of the time simply listening and acknowledging the struggles is enough.

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A great day!

I normally don’t write about our days in detail, but this blogpost is slightly different. I’d like to give you an idea about our day today.

For those who don’t know, we’re in the process of getting our two older sons, B (15) and D (12) assessed as there are quite a few traits that are pointing towards Autistic Spectrum Disorder. And even though we didn’t see the necessity of it before we are now ready to find out. I know we’re not alone, but it might help people to understand what our days are often like.

We don’t go out an awful lot, especially not with all 5 members of our family, but today we did. Today we went swimming. The activity was already postponed a day to give B time to process the plan and save him from getting unnecessarily stressed.

Before leaving the house, B was as slow as can be with getting ready. D got very anxious before we left about who was going to help him with his goggles and his swim hat and other insecurities about the whole swimming experience.
Meanwhile, N couldn’t stop running around, which was loud so quite a sensory overload for most of us. My husband was great. He helped us all getting ready and didn’t just leave it up to me which has often happened in the past.

When we arrived in the pool, D was very nervous about the depth of the water and needed tons of reassurance, followed by a long discussion about and fiddling with his nose clip to get it all sorted just right. Then there was the moment where B had a short interaction with the staff where he was told he couldn’t take the foam noodles. He handled it well, until he was back with me where he burst out in tears. Another hugging and chatting session.

After swimming we were having some food in a pub/restaurant, which brought some new challenges. D didn’t know what to have which stressed him out. Again lots of chat, reassurance and explaining that he really didn’t have to worry if it turned out that he didn’t like the burger after receiving it. So much worry in his head. When his burger arrived he didn’t touch it because the bacon on it wasn’t crispy enough. He only ate the fries. I made him some food after we came home, which he did enjoy.
Meanwhile B was lying/hanging on the bench as if it was a bed.

Even though there was a big portion of stress and anxiety throughout the day we seemed to all enjoy it (eventually) which tells me that we, as parents, did well. It’s hard sometimes to accept the fact that control doesn’t make things go smoothly in our family. It’s the acceptance of five people having five different types of needs and then acknowledging and respecting those needs, even when you don’t understand them completely (or at all).

Today I realised once again that I have a fantastic family and even though we are all a bit crazy, we love each other loads.

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The boys in action.

It’s been almost a full year since I wrote my last blog. And things have changed.

After almost 3 years of unschooling (if you don’t count the occasional wobble where I agree with the boys to ‘do Maths’ for a few days, so that their dad and I feel better) I think we have reached a major milestone. We’ve reached a point where we are no longer fully deschooling.

Let me explain.

N, who is 7 now and has never been to school, has decided last week that reading would be very helpful. This is totally his own decision. When he told me, I reminded him that we had signed up for Reading eggs (a learning to read application) a while back. At the time we thought it might help him to have the option because he was learning to read little words by himself on the computer and showed interest. This only really lasted for a very short time, so it had been untouched since. But now he’s decided that he is going to give it another go.

So for the last few days he’s done reading eggs lessons every night, just before bedtime which seems to suit him best. And of course only if and when he wants to and without any prompting.

Our middle son, D is now 11 and was asked to create the music for a computer game his friend is making. He has got a proper deadline and is working towards that. Lots of creative skills as well as business skills in that.

He also has a fair amount of conversations with friends who go to school where he explains to them how he home educates himself and how we are facilitators and not teachers like in school.

Then there is B, who’s 14 and has decided that the time has come to really look at his future. He’s not happy with how he spends his days anymore and wants to challenge himself more with his future in mind. So we made a plan together, so things became a bit clearer and he now is actively focussing on Maths. He wants to get that to a high enough level so he can move on to physics and engineering. He also decided that he’ll start with Biology and/ or Chemistry soon.

So after all this it’s clear to me that, even though it’s hard at times, standing back and letting the boys figure it out for themselves, make decisions for themselves at their own chosen time, is paying off.


They make their own decisions. They invest in it.

They are passionate, because they understand why.

They learn loads and they stay curious.

They are happy.




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What is it all about?

Now that we are approaching the end of our second year of home education I thought it was appropriate to document our progress so far. I haven’t done this in previous posts, mainly because we don’t test and/or monitor the boys as this will make me nervous and wobble more.

I trust my boys and their natural abilities to let me know when I’m needed to help them. I don’t tell them when they need help because to me that shows them that I don’t trust them or their abilities and that maybe they shouldn’t either.

So… No tests, but how do you know that they are progressing?

I think that question is easily answered when you meet the boys, or in fact the question doesn’t need to be asked when you look at them or better even when you talk to them. When I look back more than two years ago, our boys seemed ‘fine’ to the outside world. Normal boys who got on with their lives, go to school, do their homework etc. doing all the right things that are expected from a child. Expected by society that is.

We knew our eldest (B) was very bright (we didn’t know yet that he was of-the-scales smart though) and that he had emotional issues like meltdowns and/or tantrums.

To the school system our second son (D) was just average except for maybe being too sensitive to ‘teasing’, but I secretly think that they blamed me for being overprotecting. We however knew that he is very bright and very fussy about labels etc., but that his older brother had similar issues/sensitivities so we were not too surprised. He was always hard working in school and both B and D were (and still are) quite the perfectionist, which I always viewed as a positive. After all, I was a perfectionist too. (Now I know that it is not necessarily a positive all the time as it has the ability to get in the way of learning, because what is learning without making mistakes?)

Our third son (N), who is four years younger than D was just a baby. He was in preschool and seemed to love it.

In December 2011 we started our home education journey. In the beginning the boys just loved not having to wake up at 7am and be rushed in any way, even though I still felt they should do certain things, like getting dressed and go to sleep, at particular times. I was under the impression that this was best because the rest of the world did this as well. (Thinking about that now, this seems a rubbish reason!)

I also felt that the boys had to hit certain levels at certain times. I was conditioned to think that a child should be reading at a certain age and that he should read certain books, that he should be learning to do handwriting and that he is probably not going to like Maths because it was hard and children don’t like hard work or putting any effort in anything considered ‘important’. Now, through my own learning, both by doing research, reading a lot and most importantly personal experience, I know for a fact that this is pure nonsense!

I have learned that a child will learn best and most efficiently when they are ready and interested. Just the same with walking, talking and potty training.

So, now about two years after we started our unschooling journey without tests, without workbooks (even though we do have them available), without strict bedtimes, without ‘should’t, with a few wobbles, but with lots of time, laughter, messiness, humour, lots and lots of conversations and questions I can honestly tell you that it works!

B has decided to sign himself up for an online course on Astronomy, which he will start after doing a mathematical biostatistic course which, we hope, will help him. I’ve signed up as well with the idea that I can support him in his studies, but of course it might end up being the other way around.

D has shown an interest in cooking, especially making bacon sandwiches. He is actively working on his shyness and enjoys being more independent by going to the shop around the corner on his own. This may seem to some of you like nothing special, but believe me, it is. D has had very negative experiences in school, which he’s only talked about in detail ages after he had left school. It had a major effect on him and he has been and still is struggling with self esteem issues and is still displaying school type behaviours. He still has a lot of internal shoulds (‘I should do this’ etc.), but he is slowly getting more relaxed and opens up which shows the lovely, caring little man that he is.

N is very interested in astronomy, anatomy (bones especially), cooking and reading. He has asked his dad to read a science fiction book (‘to your scattered bodies go’ by Philip Jose Farmer) as a bedtime story. So they have been doing this and he seems to be loving it. His interest in astronomy is probably from talking to B and looking at B’s astronomy books.

All of this just confirms to us all we are on the right path. And don’t get me wrong, I am sure there will be other security wobbles ahead, but I believe this is more down to parenthood than to our chosen path and maybe this is the true reason why I felt the need to write this blog (with a little encouragement of a friend – thanks R.!). As a reminder.

So to remind myself and anyone else who is having a home education wobble:

‘You are doing a good job! Look at your kids and ask yourself: Would they be happier in school?’

Isn’t that what it is all about?

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Am I the mother I want to be?

I haven’t been blogging for a while and I’d like to share what’s been happening lately. As many of you know I have MS and my main symptom is and always has been fatigue. This is not the type of tiredness you can sleep off and can be debilitating which is frustrating and makes me grumpy and snappy at the kids.

Lately I have been working on my health (again) with the purpose to end up following the paleo diet, which I tried before, more strictly. I decided to follow a 21 day Cleanse (http://thebrandnew.me/). This meant no gluten, no sugar, no coffee, no alcohol etc. and drinking lots of water.

I did well.

After about 4 days I suddenly start waking up between 7 and 8 am, had a shower, my morning lemon water and ‘alone time’ before properly waking up my boys. As far as I remember this had never happened before. My head seemed ‘lighter’, my memory seemed better (even my kids mentioned it), I was happier within myself but above all my patience returned and I took the time to communicate way more calmly, because I suppose I felt I had the time and energy.

This is the mum I’d like to be.

I went on and followed the Cleanse strictly and didn’t stray once, until day 19…
We are now 4 days further and I am back on my paleo plan and feeling better about it, but after I strayed from my diet I noticed a major difference! My fatigue returned and with it my grumpiness. Yesterday I snapped at my 5 year old because he didn’t want to clean up his Lego alone. He asked me if I could help him, but I just felt drained.

So I snapped and I guess that woke me up big time!
I have now decided that I am going to stay on the diet and only stray if there is a special occasion and I feel I can ‘recover’ the next day. I am not sure if I can actually stick to that, but I’ll try. This is not just for me and my health. I am also able to give my boys the mother they deserve.

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A win-win situation!

After reading my friend’s blog (http://homeednovice.blogspot.co.uk/2013/01/a-little-wobble.html?m=1) about her thoughts about home educating her three boys I started thinking about us. After all her three boys are not much younger than ours.
Do we really need a different approach for each of the boys?
As our approach is very much child led I suppose the answer could be yes, but when I think about the overall picture I don’t think that that is actually the case. I deal with every situation individually therefore it doesn’t matter who asks for my help. I will deal with the question in a way that is most suitable for the one who is asking.
I used to ‘teach’ the boys, was quite organised, planned lessons and sat with them making sure they would do their ‘work’. I cringe at the thought of that now. I realise now that I actually recreated school at home, which didn’t do any of us any favours. It was very tiring for me and not particularly enjoyable for them, especially the bits they really didn’t want to do but were being ‘forced’ to do. Feeling really bad about that now to be honest.
Nowadays I listen much better to what they want and need and follow them in stead of expecting them to follow my wants and needs. And surprisingly this works really well. Everybody seems to get the time to do what they want and need and what is appropriate for them in terms of their level, their preferred approach and interests.
A win-win situation!
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Does the truth take the magic away

Christmas… What is it all about? Do we really need a Santa to make it a good Christmas?
Even if children get scared of the thought of a stranger entering their house in the middle of he night?
How can we teach a child to be careful about strangers if it is ok for Santa to sneak into our house? And what if a burglar, dressed as Santa, would do the same around Christmas time? And how is a child supposed to know not to go with ‘Santa’, when ‘Santa’ approaches the child and ask him if he would like to see a present that he has in the back of the van? I am just saying… Have we thought this through?

Children do have a natural warning system.

Unfortunately this is frequently ignored by adults, when they don’t see the problem. Take ‘visiting Santa in the grotto’… Sitting on his lap… Why do some people find the picture more important than the child’s feelings. A child crying his eyes out because he simply doesn’t want to sit on this man’s lap. And why would he? He doesn’t know him and even if he did, he is likely not to recognise him! The internal alarm goes off, the child let the parent know by crying and the parent ignores it. What does that tell the child? Your warning system is wrong! Your feelings are irrelevant, which then will be translated to you are irrelevant. No respect!

Yet the parent expects the child to respect them.

Why is it ok to lie about Santa’s existence? Are the historical facts and myths not interesting enough?
When I was growing up we didn’t have Santa, we had ‘sinterklaas’ who would arrive with presents on the 5th of december. My parents also let us believe that he was actually a real man. When we were told eventually that this was all fake, I felt quite cheated on. I definitely did not appreciate it. If I think about how we celebrated Christmas, it wasn’t about the presents (we didn’t have any). Christmas was about family, peace, warmth and being nice to each other (… and food, lots of food). Christmas music in the background, watching Christmas films, playing games together etc etc and then a lovely meal that seemed to last for ages while we talked and laughed.

It felt magical and lovely. Presents weren’t missed!

No need to add a lie!

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