Category Archives: Autism

Dietary requirements

I know I’ve mentioned before that Teddy’s ‘connectedness’ with his environment is directly linked to the healthy functioning of his little body. If Teddy’s system is happy, he is with us. If it is distressed, he is disconnected. It’s really terribly simple.

But as simple as it may be, we didn’t work it out for the best part of two and a half years. The pieces of the puzzle fell into place in a beautiful dance of awakening.  Last Easter we finally admitted to ourselves that something was ‘not right’ with Teddy’s development. His father was talking to his own mother about it and they discussed autism. She then mentioned an article she had read about diet, and… the rest is trial and error.

Through painstaking trial and error, in fact, we have discovered that Teddy’s tummy is happiest when he is on a wheat-free, dairy-free and salicylate-free diet. What are salicylates? I hear you ask in horror… I did too 🙂 (follow the link to Wikipedia for more) The unfortunate news is that they are a naturally occurring pesticide to be found in all those foods you are proud of yourself for persuading your babe to eat: broccoli, for example, which Teddy loved. Grrrrr. And so began a couple of months of being chained to the cooker whilst attempting to find foodstuffs and alternatives that our littl’un could eat and tolerate. One of the biggest problems with intolerances is that the ‘alternatives’ have so many additives, preservatives, and last but not least, substitutes that are also untolerated, not to mention the fact that they are ridiculously overpriced as they have a desperate captive market, that they are simply not viable as the alternatives they set themselves up to be.

Just as each child is different, just as each child with autism is different, so is each child’s digestive system and tolerance / intolerance makeup. And with Ted, we have discovered that while wheat is a big no-no (we also avoid it due to intolerances – check out Wheat Belly if you are remotely concerned you might struggle with its digestion, too), its ancient predecessor spelt is just fine. So home-baked spelt bread, biscuits and cakes baked using spelt instead etc are all fine, if a little labour intensive. We have tried a plethora of milk alternatives: oat milk (he was horrified), KOKO – coconut is no good, soya he can’t tolerate and almond milk contains, however trace it may be, cyanide, and the one he finally settled on is rice milk. While he won’t drink it, it can be substituted for any milk in any recipe. And PURE sunflower margarine, or Vitalite takes the place of butter. For a long while he had no cheese at all, but we have now worked out that goat’s cheese – the hard white variety – is okay.  The only fruit he is allowed is Golden Delicious apples, peeled and cored, or pears. Ditto. But a little imagination goes a long way. While shop-bought sausage rolls are no good, an allergy-happy alternative is mince with onions, grated pear, parsley, in a spelt and PURE pastry. And they’re delicious. But it is time consuming. It’s back to basics stuff. The simpler the better. All home-cooked. Motherhood at its most primal. The latest technologies, fast foods, easy meals… they may just as well not exist…

Can you hear the exhausting labyrinth of ‘cooked, rejected; cooked tolerated; cooked, loved’ through this monologue? 😉

There is a wealth of cookbooks out there, and a wealth of information. You can find recipes on Pinterest, on Mumsnet forums, oh everywhere. But the difficult truth is, all you can do is work it out for yourself.

But it is all worth it.

For those mornings after the days you got it right, when you open his bedroom door and, rather than a small person who barely notices your existence, who is locked away in his own little world, a bright-eyed and bushy-tailed toddler bounces up to you, looks you right in the eye and says “Hello Mummy.”

That’s when you remember what it’s all for. ❤

Teddy and Daddy.  Connected.

Teddy and Daddy.
Connected.

Note: I would dearly love for this, too, to be a place where we can share recipes. If you have any successful recipes you’d like to share, please do comment and we’ll get a page together where I can post them for everybody. Thank you. 🙂

Trying on a new hat for a good fit…

autism3I’m considering having this made into a t-shirt 😉

Generally speaking, in our daily lives, we are fortunate enough to have a wide circle of loving and understanding friends, who have made it their mission to investigate the situation we find ourselves in with Ted, and how best to interact with and understand him. Those who cannot understand it, or who expect us to ‘carry on as normal’, have naturally fallen by the wayside. Without rancour, but it is much too stressful to pretend to be something you are not, to have to keep apologising for something that should require no apology, to navigate places and people who have unrealistic expectations of what is possible. It is a much less stressful proposition, we have learned, to have a meal with friends at their house, or at ours, than to attempt to sit through a meal in a restaurant. Although we are learning those little tricks I have mentioned before (stocking up on little toys from pound shops etc) to get through such situations, should we have to.

We don’t encounter too many folks who clearly weren’t told not to stare as curious children, but the sad fact is that we tend to avoid areas and situations where there are too many people or too many expectations to conform to a standard mode of behaviour since, as I have mentioned before, judgment is never far behind when you are attempting to live a ‘normal’ life out in the big, wide world, with an autistic child in tow. And of course, as I have said before, part of the issue is that there is nothing obviously marking an autistic child as autistic. By and large, an autistic child looks like any other child. Which reminds me, I also love this:

met one

Because the fact is, while autism has many common traits, no two children display the exact same ones, and like every other child on the planet, each is different. So there is a very real danger of making assumptions or basing expectations for a child with autism on your experience of another, totally different child.

At the outset of Teddy’s investigations I, too, was guilty of the sentiment behind one of the most common exclamations I hear:

“Oh, I thought they weren’t supposed to be able to do that!”

It’s a difficult statement on many levels. First, your child is being lumped in with everyone else, which is never a comfortable situation, even without the challenges that autism brings. Secondly, it can engender a very uncomfortable desire to defend the diagnosis and, if you are not careful, you can find yourself listing all the ways in which he does conform to it. That brings with it a horribly dirty feeling of betraying your child, since you spend the vast majority of your life with this small beloved person focusing on the positive. On what he can and does do.

A simple example to demonstrate this point is that many autistic children cannot stand to be touched. Teddy, on the other hand, spends that small portion of his life that he is not running around his immediate environment, climbing furniture, or demanding food, snuggled into or onto either of his parents, usually with the command: “Big cuddle!”

You know what? It’s a minefield. You think one thing is positive and a sign of hope, and then someone in the field of paediatric care comes along and says “Ah yes, they often do that. It means…” something completely opposed to the hopeful spin you had given it.

But no matter what anyone else thinks, says, or has experienced, Teddy surprises and delights us every day. The moments in which we throw one another puzzled or dismayed glances at some particularly troubling new development or behaviour are regularly and completely eclipsed by the moments in which our hearts and souls soar with love, pride and joy at some tiny, tiny milestone we were never sure he’d reach. Speaking to his occupational therapist the other day, I said to her “It’s baby steps, really…” and she looked at me quizzically.

“Have you said that before, during this meeting?”

“No. That’s the first time.”

She paused.

“Then it was one of the mothers I saw this morning. The exact same words, in the exact same tone.”

There’s a reason for that.

As soon as the word autism has been heard (and you will never unhear it), the facts, experiences, and literature ingested and digested, the biggest and most helpful thing you can do is open your mind (your heart, of course, is already cracked wide open) to everything. And your eyes and ears. Because, if you are not careful, you can miss those baby steps.

Two years ago, when Teddy was progressing more or less as you would expect for an 18-month old child, he could tell you all the sounds the animals make. It was one of our favourite party tricks and I remember very clearly the pride we felt as we heard his beautiful responses.

As he became less and less verbal and responsive, he stopped doing that.

But with the acceptance of his challenges, investigations into changing his diet which produced immediate and dramatic results, we have watched him slowly coming back to us.

Driving to nursery the other morning, we passed a field of cows.

“Moo,” said a little voice from the back seat.

Baby step. Don’t miss it!

“Yes…! … Teddy? What does a sheep say?”

“Baa!”

“Yes! What does a dog say?”

“Woof woof!”

Once, such responses were taken for granted. Now, the smallest response can set you up for the rest of the day. Once, I was grateful for big things, and took the rest for granted. Now, the smallest things rock my world.

If you want your child to be understood, I have begun to learn, then you need to teach people how to understand him.

autism2


Peaks and Troughs

I don’t think my heart has ever been this heavy.

But, paradoxically, I don’t think it has been as light either.

Which, I suppose, brings a kind of balance to life, doesn’t it?

Yes, we’re on autism again 🙂

It’s all so relatively new, and we’re wading through it, learning more each day, struggling through the hard times: the unpredictable and sudden lashings out and meltdowns; rejoicing in the good: taking Linsey’s hand and walking into nursery without a backwards glance. Grateful, oh so grateful, for people like Linsey, who understand. And friends, too, with children on the spectrum, or with other challenges, who are not only mines of information, but incredible support. These are the ones (and you know who you are) to whom you can make confessions nobody else would really know how to respond to. You can say to them “I don’t know if I’m cut out for this” and they know what you mean. They know you don’t mean “I’m about to run away, this is too much”. They know you do mean “I’m struggling. This is tough. Sometimes I just can’t get my head around it”. They know you’re not feeling sorry for yourself, but that you are full of worries: how will he be accepted by the world, what will he struggle with, how much will he be capable of, will he ever have any independence, how much has he progressed already, what can I expect for him, I don’t know I don’t know I don’t know what’s normal…?!

And then they tell you you need an SEN. And you look at them blankly. “A Statement of Educational Needs” they explain. And you nod as if you suddenly and miraculously understand. But you don’t, really. So you own up. Why? What is it for? “It’s so he can get the help he’ll need.” Oh. It will tell you how severe he is. If he gets a level this or a level that will make all the difference. You find yourself hoping he gets a level that so he can get more care, even though a level that means he’s more challenged… And you chide yourself for wishing such a thing.

They ask you to fill in a form about him. They explain that they will, too, and that when you read theirs you mustn’t be dismayed by how negative it sounds. It’s just so he can get the help he needs.

It’s a strange in-between world you’re asked to inhabit at this point. You spend your life looking at the positives, noticing the tiniest yardsticks of progress: “He just said ‘Where ‘loon gone?’! That’s a whole question!” “Did you hear that? He just said ‘Door’! He wants you to open it!”
And then there’s the other place where they want you to look at all the challenges, all the difficulties he has, all the things you spend your daily life glossing over, ignoring, attempting to improve without actually saying them out loud. You find yourself on this strange rollercoaster of believing the best whilst being asked to prove the worst.

I don’t mind telling you it’s tough.

Then you have nights like tonight, where you’re plum tuckered out with it all, and he’s just dumped two pints of water out of the bath all over the floor, and your strength is waning.

And you get him out, onto your bed to get his jim-jams on, and his chubby little arms snake around your neck. He sticks his little lips out, as he’s seen the frog do in his favourite film, and he pulls you in for little hot kiss after little hot kiss. Then he just holds you, around the neck, your cheek on his cheek, and before you know it, his breathing has become deep and even and he’s fallen asleep.

His world is exhausting.

And you dress him through his sleep, and deposit him in the strange makeshift bed on the floor (because he refuses to sleep in a real bed) and you’re on a strange and wonderful high.

Those little arms are still around my neck.

And, believe me when I say this, because it’s from the heart, suddenly I remember: I’m grateful.

Addendum: I guess, what I’m really trying to say, is that it’s all too easy to lose sight of Teddy in the sea of ‘requirements’… And Teddy, put simply, is perfect. Just as he is. 🙂

A Hospital Appointment

This morning was a bit of a test, frankly.

As Teddy’s parents, we go through many different, ‘new’ experiences regularly. And today was one of them. There were, however, many lessons learned. Of course.

First, I’ll lay out the situation.

No nursery school this morning: Teddy had a hospital appointment. At 9 o’clock. In the next town. With four big brothers to get to school first. That, in itself, was a bit of a feat.

A hospital appointment is, to be blunt, one of the most difficult situations you can face with an autistic child. You can choose whether or not to go to a restaurant (and more often than not, we choose not – we’ve walked out of too many to particularly want to keep at it). But a hospital appointment for your child is something you cannot opt out of.

I decided it was best to ‘come prepared’. I peeled and chopped up some apple (Golden Delicious, the only type his diet allows) and put it in my handbag, along with a tub of homemade cookies (Ted-diet-friendly) and his cup of water.

Simply getting to the right place was a nightmare. Teddy is very big for a three-year old. He wears aged 4-5 clothes, and they won’t fit for long. He is quite a weight. While his daddy was getting change for the exorbitant hospital car park fee, we hurried to his appointment. Allowing Teddy to walk under such circumstances means myriad detours, sit-down protests and much delay, and we were already 10 minutes late. So I carried him.

I had assumed we would be in the same place we normally are, where there is a wonderful big waiting room for children, filled with toys of many descriptions, pens and paper and very few other people. But they turned me away – opthalmology is at the opposite side of the hospital, we were due 10 minutes ago, and after struggling to keep him with me whilst announcing our arrival, after he had run off into various different rooms he shouldn’t have been in, disturbed various different consultations, because the lady at reception kept talking to me and it is impossible to restrain him, we were placed in a waiting room full of other people, mainly adults. There was a rather woeful area for children in one corner, containing two toys and a play kitchen with all accessories missing. I made the mistake of switching on the Peppa Pig toy. Don’t get me wrong: Teddy was thrilled. There’s nothing he likes more than pushing the same button over and over to hear the exact same sound. Again and again.

I can’t say the same for the rest of the waiting room.

So, when he was distracted by something else, I switched it off.

Which is when he decided to run around the room, dragging his ‘nuggie’ (a blanket) behind him, trying to put his fingers in the whirring fans.

By this time, of course, as we have come to expect, the looks were beginning. The ones that say “Can’t they keep him under control?” or “What’s wrong with that child?” And my smile has become a bit more fixed, the stress levels have risen. And finally he was called.

The lady who saw him was an absolute sweetie-pie. But we had once again made assumptions we shouldn’t have. She was just the first of three. She was totally adorable with him, had obviously done this kind of thing before, managed to get him to cooperate by not being precious about what he touched or played with in her office. She was incredibly quick and efficient with the awful eye-drops to dilate his pupils.

But then.

Then we had a 20-30 minute wait until the eye-drops worked properly and we were seen by doctor number two. We didn’t want to go back into that awful waiting room. The walk to the other one, the other side of the hospital, would take 10 minutes at Ted’s pace and then require that we drag him away from the Wonderland of toys to fight and scream our way back again. We decided to try to tough it out on the chairs outside their rooms. We had brought the Kindle he loves playing on – it has puzzles and games that keep him very happy.

Normally.

But it also plays the alphabet videos he loves to watch and we had no wi-fi. And that, of course, was all he wanted to do. And there is no way he will sit still if he is not occupied.

So he began to roll along the floor. There’s nobody around. He’s not doing anybody any harm. We let him. He crawls a bit, gets up, walks to the doors at the end of the unpopulated corridor (all the busy-ness is the other end), says “Bye bye” and tries to open them, runs back to Daddy… To and fro.

I was relieved. He was running around an area empty of people or sensitive equipment, where he wasn’t disturbing anyone or getting into any trouble. He was mobile and therefore happy (though his “Bye bye” indicates his wish to leave, of course!)

And one of the staff asked me to stop him and keep him away from that end because it was where the theatres are and people needed access (which, of course, he wasn’t actually blocking).

At this point, I’m afraid, the rawness of the situation, my still newness to being an ‘autism mum’, the stress… I said “He’s autistic. I’m just trying to keep him happy and stop him disturbing anyone else.”

Then things started moving. He sat on his daddy’s knee (just) while I went to talk to them and they suddenly started bustling to see if we could be seen more quickly. My pent-up frustration with the nurse turned to admiration and gratitude as she began to move to get Teddy in.

Two more doctors were consulted – one who wanted to see if he would need glasses (thankfully he didn’t. Imagine keeping them on!) and another who wanted to decide if he needed an MRI scan, electrode-tests etc. Thankfully she, too, when faced with our assurances and the evidence of her own eyes that his eyesight and nystagmus were so vastly improved they were barely perceptible any more, decided he didn’t need them either.

Both of these experiences involved a lot of wrestling with a very strong small person, cajoling, exaggerated play: all ploys to try to get to see his eyes. He was an angel. Not that anyone without knowledge of autism would have seen it that way.

Job done. We left. With more than a sigh of relief.

So, exhausted and battle-scarred, these are today’s lessons:

1) Ascertain, before going to an appointment, exactly what you are going to be there for, and how long. Our appointment letter was vague in the extreme, no one had explained beforehand what would happen, and we had wrongly assumed it would be a one-person, in-and-out affair.

2) Visit the pound shop and stock up on small, entirely new toys just for the occasion. Had I not assumed we would be in the waiting room with all the toys, I might have thought of this in advance. It is amazing how long a new toy can distract. And as soon as the novelty wears off, a new one can be produced. This is a trick I learned many moons ago when flying with his big brother, then a young toddler. But it would work very well with Teddy.

3) People do not get autism. Nor can you expect them to. As our first doctor this morning remarked: “The problem with autism is that you can’t see it.” I have read on so many forums the enormously difficult experiences and comments parents of autistic children have to handle on a daily basis. People wrongly assuming it’s a ‘discipline problem’, ‘they don’t look like they have anything wrong’… I found myself, in that waiting room, wishing I were wearing a badge or, as that same doctor put it, had walked into the room and announced it. People may not get, just by looking at him, that Teddy will not behave as they expect, but if you tell them before they have a chance to disapprove, then they have the opportunity to exercise compassion rather than judgement. This is one of the fundamental lessons for me.

I appreciate, of course, that there are many different people in our world with many different challenges, many of which I don’t have the first clue about. But who becomes passionate about a cause? Someone who has experienced it, is living it, whose life has changed because of some association with it.

Through my relationship with Teddy, I have come to realise that his biggest challenge is not autism. His biggest challenge is the lack of awareness, through no fault of their own, of the society in which he lives, about autism. Were people to have a clue (and it is hard to express how grateful I am when I meet someone who does) about what it means to be autistic, Teddy’s immediate environment would, overnight, become a more accepting and hospitable one. And, by extension,  families with autism would no longer feel that they live on the edge, on the outside looking in.