We Cook Together

My son when he came to us in 2007, was conspicuous for using his nose to learn about the world. Whatever new thing he saw, he first smelled it. I guess – it is a guess only – that the olfactory sense developed better because it was one he tried using even when in a crib in the orphanage.

Normally, when you have a baby or a toddler at home, they move around. They creep and crawl and discover the world with hands, eyes, also mouth – and of course their nose, too.

In the orphanage, young children spend way too much time just in their high, safe cribs which unfortunately give no way to work on their senses.

The result are sensory problems (and you need occupational therapy/sensory integration therapy later…) and even persistent primitive reflexes which lead to major issues (issues with fine and gross motor skills, reading difficulties, balance problems and many other). Our son is doing his NR therapy to reduce these problems.

My guess is that while my son’s other senses did not have much “to do”, he could still smell around, so this sense was more important. In course of years at home, the sight gained importance, but he still enjoys smelling things and he’s a fan of my perfumes shelf :-).

The whole topic of neuronal reorganization deserves a post on its own, but for the time being let me get back to the real topic: Cooking. The first chore that makes fun.

One fine day my son expressed his interest in cooking. I like cooking but I do it from time to time only, mostly on weekends, as on weekdays we all eat at work or school. On weekends I have time to cook so my son started helping me.  We started with simple tasks like washing potatoes or mixing something but then progressed to actually cutting, first on a board, now also “in hands only”. I pay attention that he learns from start the right way of handling a knife (e.g. how to hold whatever you slice and avoid your fingers being cut, how to actually keep the knife in your hand, how to move it – after all there is a reason why knives are slightly rounded).

As the cooking takes place about twice a week, he does not get bored. He also enjoys that he shares this time with me only. Besides he can smell and taste whatever he wants (he tries much more than earlier when only I cooked) and I tell him stories around cooking (e.g. why one does certain things). He enjoys that there is a rather quick and tasty result of his work. Needless to say, given his olfactory preference, he sometimes opens my little spice jars just to stick his nose inside and learn what is turmeric, what is cardamom and what juniper smells like.

We are still way from him being able to cook anything on his own (and handling fire/stove is one thing I do not allow him yet) but whatever we do strengthens his self-esteem; he tells others (e.g. his grandparents) about each cooking session.

In the meantime we also have a little tradition – each cooking session must end with a joke or riddle for our head gourmet aka daddy. It started with my son learning about the five basic tastes – he did not know the umami (savory) one – so I demonstrated it using some soy sauce of course. He had then the idea to “cheat” daddy that he was drinking coffee while in fact it was a teaspoon of soy sauce. And so it went, now I have hard time thinking about what would make a good joke or riddle.

Advertisements

Proud of Myself

Today I am proud of myself. I managed to break my own behavior pattern tonight, one I am struggling with.

If someone by chance assumed by reading these posts that I was a very understanding parent, patient and so on, then please read again. I am none of these. My key problem is that while on one hand I know really a lot about FASD, deep down I struggle with it. I have major difficulties to react properly to my son’s various behaviors.

One of the behaviors I detest is his laughter at inappropriate moments. It is such a trigger for me :(. I normally storm out of the room and the evening is over. It is hard for me to raise beyond it and e.g. go back to him and talk normally like if nothing happened. And there are some other triggers like this, one day I will write about it more – if any parent of a FASD child happens to visit this blog, she/he should know they are not alone.

You would say I should consider counseling – I actually did. The therapist nailed down the reason but then said I needed no therapy and that I should be aware that I was facing an extremely difficult task which could only be solved by better bonding with my child and the only person who could do anything was me. Call it attachment issues, but on my side.

So – I try my best. I fail often but today I am happy because I consciously broke the pattern / the script I used to run when my son laughed the inappropriate way again.

The actual problem was: he said he had by mistake peed on his pants so he put them in the bin with dirty clothes. I ensured only that the bathroom was not in need of a cleanup – it was not. So then I said, better would be telling me what happened and putting the pants into the washing machine directly, because otherwise all the clothes in the bin will smell of urine. Here my son started laughing and I got triggered.

I did storm out (as usual) but then I found the strength to consider what to do next to finish the day in a better way.

I managed both to stay calm, briefly make sure that he understood what happened, offer him a way to fix the problem (put the pants into the washing machine) and then even we hugged and said good night.

Proud. Determined to continue.

It is not only about problems

Children with FASD have multiple issues but they definitely also have strengths.

My son’s specific strengths are:

– Vocabulary, however this must be treated carefully: FASD kids have often very well-developed expressive speech but the receptive stays behind, i.e. they use many words they do not really understand. It is sometimes true also in my son’s case.

– He is bilingual. Truly bilingual, except for writing.

– He is good at music and can play flute.

– He is good at judo: just got his yellow-orange belt last month.

– He is very creative: more than once he astonished his German language teacher with his own stories or insights, on a level beyond even his chronological age.

– He is good on stage: was part of a theatre group, played on real stage during school theatre festival in Frankfurt last year and was really, really good.

– He has very rich imagination, which is visible when he plays with e.g. Lego. Long stories take place on his room’s floor 🙂 and every lego construction has a back story.

– He is actually good with Lego. This is new, until about 1-1,5 years ago he could not do much with it. Instruction leaflets were too difficult and he had no ideas on his own. It changed really about a year ago soon after our first three months of daily NR exercises and kept improving since then. Today he is not a big fan of  “building what the leaflet shows” (except for figures, he loves both the pre-designed ones and own creations) – he usually puts all the Lego stones together and envisions a construction (a building, a car, a spaceship, whatever), he talks a lot about it to us and then builds it. It’s a pleasure to buy him yet another Lego set.

Our Flooded Bathroom

Our son is not the biggest fan of bath or shower so it takes an effort to convince him day after day he should mind his hygiene. Usually it ends with a shrug, some unnecessary comments from him (about how he hates showers and how unnecessary they are and how irritating the parents are) but at the end he does it.

Then the next step is monitoring him – if we do not check upon him, he can as well let the water run for 15-20 minutes and just play with it without even thinking about washing (forget using any shower gel or something). Then he would finally realize it’s been long time and just leave the shower (wet but not washed).

So we have to check. When he was younger, one of us stayed with him in the bathroom. These days we give him his privacy (he will turn 11 next month) but do control from outside (one can tell by hearing only if he is playing or actually showering) and if needed, we intervene.

Well, this week Tuesday I was busy and did not listen too well. He seemed to be showering but I knew we were in trouble when I heard the shower cabin door opening and my son calling, “Dad, I have a problem”. Well, bad luck, dad was on phone. Mom came.

What I saw: the bathroom was flooded. Water was inside the shower cabin (of course) but also on the opposite wall, on the floor, on the rugs, on the ceiling and everywhere in-between. Half of the bathroom was wet.

My helpless child stood there and had no idea what happened. But as his first answer is usually “I do not know”, I insisted and found out that he played, of course, with the shower head. It was SO FUN to direct the water towards himself and sprinkle his face. He just did not notice that the water stream sprinkled the ceiling and all the surrounding…

OK. So he had to clean up. With my help because he intended to use his own bath towel to dry the floor (he has not yet internalized the difference between a towel, a floorcloth and a dishcloth and such). Some more complaining (“I cannot”, “I don’t want”) BUT it got done and actually quite fast.

I did force myself to praise him for that (I do have major problems in such cases and I was much more angry than that it seems now).

Let’s see what comes next.

 

 

IQ Test Results

We got today the IQ test results (In German: HAWIK-IV, similar to the “Wechsler Intelligence Scale for Children“ (WISC-IV) for our son. I must say I was worried that it could be worse that I expected (the low range of the norm) – but I was spot on.

The WISC-IV test checks the IQ in four areas (as result, there are four index values). It takes into account the age of the tested person, too. It is calibrated in such way that within the peer group, the average IQ is 100 +-15 points standard deviation, i.e. anything between 85 and 115 is average.

With the overall result of 87, our son is on the borderline to “below average” but still within the average.

His four sub-index values were: 101 for VCI (Verbal Comprehension Index), 86 for PRI (Perceptual Reasoning Index), 96 for WMI (Working Memory Index) and then 79 for PSI (Processing Speed Index).

That means he is average for VCI and WMI but below average in the two others.

A – no, not high, just very normal – VCI (Verbal Comprehension Index) is the reason why whoever meets our son first time or just for shorter periods in a social, convenient (for our son) setting, is astonished how bright this child is (and why do the parents say he has issues???). Our son can speak very well, in full, rich sentences, he has broad vocabulary, he knows a lot of facts about the world (general knowledge), can combine them, draw conclusions, express own thoughts. All this plus his charming personality mean that he usually makes a very good first impression. On non specialists, that is. Whenever he met a specialist (not necessarily a psychologist or therapist – just an experienced teacher was enough – they could see through the facade.

The PRI (Perceptual Reasoning Index) is on the edge to below average. It checks the visual-motor and visual-spatial skills, organizing thoughts, creating solutions to problems, abstract thinking. Given that with FASD, the executive skills (self organization, planning, understanding time and money) are typically affected, it is not a surprise that his PRI is on the low side. PRI is called “fluid intelligence” and contrary to the VCI, it can hardly be improved.

The WM (Working Memory) is normal. WOW!!! The working memory for FASD individuals is almost always affected so I am really, really happy that he is so normal (96).

The WM Index assesses the ability to remember new information, hold it in the short-term memory and manipulate it to produce some result (e.g. with poor WM you will not be able to calculate “in your head”). It is linked to concentration, planning, sequencing, cognitive flexibility but also prone to anxiety. It is also important for self-monitoring. I need to think what to do about it because WM can be improved. For some reason all the areas above (planning, concentration, self monitoring etc.) are not really working well in daily life for our son. It is a contrast to the WM index value so maybe there is some potential.

And then the low (79) PSI (Processing Speed Index). It is not a surprise, really. How often I lose my patience, when I wait for a reaction from my son (an answer, a handling) and he does nothing. It seems his brain is then still busy with processing. PSI refers also to grapho-motoric processing (e.g. writing). Our son is very slow when writing, too.

The processing speed seems to be a problem for FASD kids. There was a study done on children with and without FASD. They all were given same problems to solve and then their brains’ activity was measured/imaged with MRI. The healthy children’s brains worked in a structured way: only certain few areas were “firing”, depending on the task. The FASD children’s brains were a different story: the neurons were firing everywhere. It is clear that these children need more time and effort than the healthy children and usually even that is not enough to reach same results. It is also considered an explanation to the question “why are FASD affected individuals so quickly tired?”

More information about the WISC-IV can be found for example here.

 

Maths, continued.

He got a 3+ in the test, scoring 81%. In Germany, the scale is from 1 (very good) to 6 (insufficient). 3+ is between 2 and 3 (not quite mathematically correct…) and means a bit more than “satisfactory”.

My husband and I are very glad with the result, especially that indeed all our son did was correct and the gap comes from what he did not manage to do time-wise. We told him we are proud he did so well.

Our son was a bit disappointed because his friend with whom he learnt (my husband coaches him) got a 1-. Well. The difference is, the boy has no FASD and just had some self-esteem problems. The second, key difference is, when last week they both practised, the other boy actually practised. Our son spent much of the time doing nonsense (squeak, protest, wiggle, giggle, drop pens, the usual stuff).

In a way however it is ok that he’s slightly disappointed. It shows he cares. For a long time he did not care.

Maths

My son had a test in maths today. One interesting thing was to see that he seemed genuinely concerned about it. More often than not, he does not.

So he worried he could not understand it – in his standard way: I am stupid, I don’t get it – and as usual, it required the super-human patience of my husband to sit with him during the weekend and learn because my son would do anything to disturb the process.

They learnt, practised and so Monday came, my son still unsure if he could do anything. Then at school, the students had the choice: either write the test on Monday or on Tuesday. He chose Tuesday. As I picked him up from school, in the car, he said he was going to practise more in the afternoon so that maybe “Dad can show me some tricks, I still do not get it”.

Well – at home it was not so easy. You could literally see that at one level he knows and wants to learn, on another level he does everything not to do it. In a way, everyone has the problem – “procrastination”. I remember that during my university time, sometimes I rather cleaned up my room completely than sit and do the thing I was actually supposed to do… It’s just so much vivid with my son than average.

Finally they learnt more but then the attention deficit problem kicked in. My kid was calculating something and mid in the work, he spotted a bread crumb on the table. Immediately it became the centre of his focus, maths forgotten. And so it went again and again.

Today he wrote the test and said that out of 8 “big” tasks, he did not manage to complete 2 sub-tasks of one “big” task and he is quite sure the rest was ok (he gets 15 minutes more than all others to complete his tasks as part of his special education agreement and his aide is allowed to help him to measure time and keep his focus, but not with the “content” of the test).

So, we’ll see. But I do sincerely hope he will get a good score because all behavior problems aside, he did do his own best to prepare for this test. It would be great if he could see his effort translate into results.

As for the maths test, this time it was about problems like, “3 apples cost 1,5 EUR, how much do 5 apples cost?” or “Ms. Schmidt compares the prices of shower gels, a 300 ml bottle costs 2,40 EUR, a 200 ml bottle costs 2,00 EUR, which one should she buy?”

Note how complex it is: you need not only understand that you have to compare 100 ml of each (or price of one unit) – so it may be ml, it may be EUR, it may be centimeters – but you also need to understand WHY actually Ms. Schmidt would care about the price. Money and time are two very abstract ideas that FASD kids struggle with all life long. In my son’s case, the money part seems to be less affected, he does grasp the idea and he is actually quite careful with spending money – but the time topic is a wholly different problem. Another big issue is the basic multiplication. He still cannot learn it by heart (up to 10×10) so it takes way too long for him to do even basic calculations (in 4th grade you have to not only understand multiplication but actually do it without much effort).

 

 

Furious – Or Just Annoyed?

“Are you furious?” asked my son late tonight.
“No, I am not furious. But I am annoyed that you do all possible things to avoid going to bed”, I said.
“I do not really know what’s the difference between furious and annoyed”, said my son.

True. It is not the first time he said he did not know what’s the difference between dislike and hate or angry, furious and annoyed.

He uses of course the equivalents in German but the problem remains the same. He uses multiple emotion-laden words without really understanding what’s behind. We try to explain him the meaning. Actually we try to explain it even when we are, at the given time, plain angry. Unfortunately so far it has not yet stuck with him and so “furious” and “annoyed” mean the same.

After more than four years with the growth hormone…

… yesterday we learnt that our son’s growth has FINALLY significantly accelerated and he made the lowest norm line (3% shortest population).

He was ALWAYS under that line – now it is the first time ever he is in the norm.

Such a little thing but it made us SO happy :-).

Our son asked what it exactly means with all those lines – I told him that he was still short for his age, but now it was “normal” short and not even less than that. He did not speak much of that later that day but when in the evening he was already in bed and my husband came back home from a business trip, the first thing my husband heard from our son was “The doctor said I am not pathologically short any more” (he used of course a less scientific word for “pathological” in German – I am not sure what would be the equivalent in English).

“When Rain Hurts”

I am half way through the book of Mary E. Greene and I started only today.

I find myself nodding in recognition every few paragraphs. All these big and small oddities of behavior which are so often dismissed by well-meaning others – “All children do this or that”.

True, all children do. But not ALL of this and not EVERY day. The dosage makes the difference.