Category Archives: Celiac

Celiac related posts

Aili’s story

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AiliSo Im sat here today, doing some work on the GlutenFree UAE Facebook page, and I decided to re share everyones personal stories. These stories make my heart ache every time I read them, they make me more determined then ever to keep going, to stand up, whenever I can and keep talking about Celiac disease and gluten. While there are still doctors out there now knowing the signs of Celiac disease, my job, and the job of others like me, is not over. We need to keep at it, keep talking, keep sharing, keep liking each others blog posts and keep on nagging everyone around us. Because although we may at times seem like a broken record, there are so many people out there who still need rescuing from the hell they are living in. We were rescued, we should have been rescued earlier, I cant change that, but I CAN try and change it for others.

So here it is, the story I cant rewrite ever again because it pains me to much to even read it. But this is Aili’s story, and ultimately also mine.

This is Ailis story. Aili has Celiac disease.
Aili was born in May 2009. The pregnancy was difficult requiring hospitalization for 1 month, and when she arrived in the world she was 6 weeks early.
Aili was never an easy child, obviously at first we put it all down to her being premature, then as she got older she earned the titles difficult, stubborn, hot tempered, bad sleeper etc etc. The list grew by the day.
She had endless problems with constipation, at times she would go over a week without doing a number two. Again, we put it down to her being premature and her digestive system not having matured enough, so struggled on with baby massage and sleepless nights. When it was time for weaning she point blank refused most foods. I dont think she actually ate anything properly until she was 1, and even then she ate very little.

Our older child started school when Aili was just over 1, and then the illnesses started, to many to even mention here, so we will stick to the big ones only. Victor who had never been to nursery seemed to pick up every single bug, and offcourse everything was also passed on to Aili. We had tummy bugs and colds with endless coughs, then Victor got pneumonia and was admitted to hospital for 4 days. Hugely stressful time as a parent. Less then a month after Victors pneumonia Aili got sick again, worse then usual. We tried to keep her home with daily visits to the clinic (difficult children dont do well in hospital), but she eventually got so bad we loaded the whole family to the car and went to the A&E, she seemed to get worse by the second!
We were sent to the fast track clinic from A&E where a nurse spotted Aili and promptly took us back to A&E, Aili was very very ill. She was admitted and tested positive for RSV. Her oxygen levels were so low had we kept her home longer she would have possibly suffered brain damage as a result of lack of oxygen. 3 days in to her stay her breathing was better but her heart rate was starting to go all over the place, she was on every monitor available at this point…. at one stage her heartrate dropped to 35 and noone knew what on earth was going on, We became heart patients instead of RSV patients. The RSV (which affects premature babies/children alot worse then full termers) had hit her hard and it had gone from her lungs to her heart muscle. Eventually we were sent home with follow up appointments with cardiologists as well as the usual doctors.

Her heart is fine now, we have received the all clear, but I am not sure I will ever fully recover from seeing my daughters heartrate go from normal to almost stopping.

A few months passed and Aili had stopped growing. She cried more then ever before, even in her sleep, she would not sit and play for even 2 minutes on the floor (not that she ever really did before either).

So we held her, we held her at night when she slept, we held her when she was awake, we held her when she played. Food was still a constant battle and she still did not each much. It seems we were in the doctors clinic atleast twice a week. I would phone up and before even asking for an appoinment the receptionist would ask if it was Aili’s mum calling.
We were told RSV can take children a long time to bounce back from, so we struggled on, not really looking for answers, we thought we had them!

A few more infections, more bouts of diarrhoea then back to constipation, I kept breast feeding because it was the only thing she seemed to want. Her stommach was always bloated and as she started talking more and more she would now tell us daily that her stommach hurt. I went to the doctor (again!) this time looking for answers, RSV still affecting her just didnt seem likely anymore.
We did stool samples, bloodtests, etc etc, everything came back ok. She got another bout of diarrhoea and also vomiting, she had aways vomited on and off, but together is never a good thing. We spent days in the clinic with an IV and nights at home.
After days of not getting better and no medicines seeming to help again we went to hospital and got admitted, she was dehydrated and her iron levels were found to be so low they wanted to give her a transfusion! STILL noone had answers for us….

4 days in hospital and off home we went, I made her a big bowl of pasta, and she vomited again…. I think we all knew at this point that this was not just some tummy bug, something must be very very wrong with our little girl…..

Our doctor called and told us some tests results had come back and we had to come in.  I knew which tests had been taken so I think I knew then that it was either dairy or gluten. I prayed for it to please be dairy, please please let it be dairy! It wasnt, it was gluten and our lives changed forever.

I say our lives changed, but they changed for the better. We took Aili off gluten and within days she was calmer, the crying eased off and she would sit and play with her brother for short periods. After a week or so she came to me, pointing at her stommach and said, “look mummy, owie all gone!” (That made me cry)
Her bad temper calmed down and she seemed a little bit to us like someone had given her a tranquilizer. For the first time ever I was able to stop and chat to other mums at school run, because Aili would wait patiently rather then scream her head off.  I was able to go for drives that took longer then 10 minutes, I was able to complete a supermarket shop rather then giving up half way through.
People I hardly knew were coming up to me saying our daughter seemed different! For the first time I realised just how bad things had been and how stressed I had been, slowly slowly we started to relax and be a family again. We still felt awful though that for all that time, our little girl had been in so much pain.

I am not going to go in to the long story of doctors visits or the rest of Ailis diagnosis, or even how I came to start Gluten Free – U.A.E, because this is Ailis story, not mine.

She is now a happy 2 year old, she is growing again, she no longer has stommach pains, and we are enjoying spending time with her.

Aili’s mum – Linda

EDIT 2014, Aili is now a happy 4 and a half year old, You can follow her journey on her mums (more personal) blog, Gluten Free & Me ( <– that is here!)

Aili

Did you lose friends over Celiac?

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I think if you didn’t, you might be one of the lucky ones. Don’t we all have them… the people who don’t take Celiac seriously, who get slightly embarrassed when we start questioning a waiter or a manager, the not so discreet eye rolling when we start wiping crumbs from a table in Starbucks or tell our Celiac kid not to touch anything. Then they blame us, because WE changed. Well of course we bloody changed! We had to! And Celiac is hard enough without us needing people in our lives making it harder! It doesnt bother me to wipe tables in cafes, so why should it bother anyone else?

Haven’t we all heard it all?

‘A little bit of Gluten wont hurt’

‘You need to expose her so she can get used to it and grow stronger’

‘I know a family where a kid was allergic to bla bla bla and they started….’ (SHUT UUUUUUUP!!!!)

‘Oh comon, of course there wont be gluten in -insert ice-cream, dried fruits, chewing gum, crisps etc here – ‘

Why is it that people who hardly know what gluten is all of a sudden consider themselves total experts?

But then there is the good side, the best bit about Celiac! The instant friendships with other families like yours, the Celiac buddies. The ones you can call from the supermarket aisle and they do as much researching as you and can tell you in 2 seconds which salad dressings are safe. The people you can 100% relax with. Wipe tables, hands, ask the strangest questions around, and then offer them your baby wipes so they can do the same.

The truth is, for us, we gained far more friends then we lost. Sure, we lost some, but again, we don’t need people in our lives who try to ridicule or belittle our situation. So if you lost friends over Celiac, then get out there, go to your local Celiac meet up and meet others like you. For me, this is the very reason I started Gluten Free UAE, I wanted my child to not feel so different. And by having a huge network of Celiacs around us, being gluten free is as normal to my kids as it is to wear glasses. Some people eat gluten, some don’t. But I will NOT have people in our lives eye rolling near my daughter when we are doing things we have to do to keep her safe. I don’t make a big deal about Celiac, neither should they.

-Linda

crumbs

A slight dilemma, to interfere or save, that is the #Celiac question.

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The dilemma; If a child in your sons/daughters class had a very very swollen tummy (every time you see him/her) along with very skinny arms and legs, would you say something to the parents, ask questions or just leave it be? 

I would be really interested in views on how to handle this tactfully and politely. I have already acted and I keep thinking about it, wondering if I could have done it better or if I should have stayed out of it. Im also not sure if I did enough, and may decide to do more (good or bad, depends on how you see it). I think for us, if someone had gotten involved and asked / told / interfered / advised it could have saved us a lot of heartache. So many have never heard of Celiac. What is your view?

Thanks

Linda

 

Another one of those trips….

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Im not entirely sure of the point of this post, and usually my posts have a clear point, but I had to write it, because I need to somehow process this, process that this is our life, and this is how we live. Its not a nice post, it wont leave you feeling gooey or good inside, or even enlightened, it wont make you laugh. Im sorry. Feel free to not read it. 

In the last few days Ive been through what no parent should ever have to go through… ever. Whats worse is that it wasnt even the first time, or even the second, or third… the truth is, I have lost count of the number of times that I have held my limp daughters body in my arms, the amount of times Ive driven like a lunatic actually hoping the police would stop me so they can help me get to the hospital faster, the amount of times Ive entered some kind of auto pilot where I just function and do all the things I need to do but I dont feel or react to anything, because if I felt or reacted, I would have had a nervous breakdown, meltdown or a whateveryouwannacall it ages ago.

So, my daughter is Celiac. Big deal huh? Many Celiacs live somewhat easy lives (and I dont say that lightly, I know all to well what the life of a celiac involves), other celiacs, like mine has a number of health issues. Are they related to her Celiac or other factors? Nobody really knows, but what we DO know is that her immune system sucks, her lungs have damage from her many many cases of pneumonia and upper respiratory infections, and Celiacs are more prone to pneumonia, on top of that she was born 6 weeks early and her lungs were probably not as great as they should be. I still fully believe that had my daughters celiac diagnosis come sooner, we would not be facing all these issues that we are facing today, some maybe yes, but not all.

So Monday I had a call from school, she was coughing alot, so I went in, gave her some meds, she seemed fine, no temp, no big wheeze, just the cough. I asked if she wanted to stay, and she did. A few hours later, another call, she’s coughing even more. I go in, and sure, she’s coughing, but not to bad, but I take her out of class. We hang out outside, play for a bit, she runs, plays hide and seek in the bushes, ‘mummy, can you seeee meeee?’, no big deal. We wait for her brother, he finishes and we go home. On the way home I see her looking a bit more pale. The tiny worry thats been inside me that I kept brushing away as me over reacting (because Ive been here before and Im maybe just hoping Im a bit hysterical and wrong rather then right!) is now growing. We get home, she’s coughing, I give ventolin, it helps… for about 10 minutes. I call my husband to call the clinic. They have an appointment only the day after. I give the kids soup, I pace, I ask the husband to find me addresses of hospitals, just incase you know, because Id rather know where to go, just incase…… I pack a bag, why? Im not sure, I had to do something, I guess I already knew, but wanted to believe that I was being a hysterical mum. She’s getting worse, I can see her chest rising and sinking, and its going to fast, to deep, and she’s not well, I know she’s not right, but its not THAT bad…. I put her in my bed, I lie with her, hoping she just needs to rest. Im lying with her, watching her chest rise and fall, thinking in my head, we need to go, we need to go, we need to go, at the same time as Im thinking, its ok, she will be better soon, its ok. Then I hear a cough and a splutter, and shes covered in vomit and so am I and so is the bed, and thats when my autopilot kicks in, the decision has been made in my head, we need to go, and then the ‘doer’ comes out and sorts everything. Son brings towels to cover the puke on the floor (yes I obviously pulled her off the bed as soon as I could), I pull sheets off the bed and pillow cases of pillows, I sit daughter in bathtub, I call husband to tell him we are going, I take the bag and add even more gluten free food and iPads, I take phone chargers, then I somehow manage to get us all dressed and ready and the pukey sheets thrown on to the floor of the laundry room. Dogs get locked in our biggest bathroom with food and water. Im doing it all so fast, but it feels like slow motion.

By the time we are in the car and driving (probably less then 10 minutes after the vomiting) she is drifting away, not unconscious really, but not responsive either. Like so many times before its all happened so fast. The GPS sends me the wrong way, or maybe I took a wrong turn, I drive like a crazy woman, but yet Im calm, extremely calm, like ice. We finally find the hospital, but the area is a mess and no parking that I can find, its dark, all the signs are in Polish and I just want to get in. So we park in a car park, not close enough, and my big brave 7 year old who must be absolutely terrified, helps me with all the bags, and I carry my daughter and we run. We run, and we get there, and I get to the front desk, and I ask the lady those familiar words, ‘do you speak English’ and thank heavens she says yes and I sit, and I open my girls coat and I point, and I say, ‘her breathing, please, she cant breathe, she has a history of low oxygen levels’.

This is a kids hospital A&E just after normal clinic hours, they are super busy, but we are whisked in to a room within seconds of our arrival and 2 Dr’s see to us almost immediately, a nurse helps translate and then husband on phone also. None of this matters, we are there, we are safe.

I don’t need to continue the story, this was 5 days ago. We were admitted of course. Daughters oxygen levels were around 87 when we arrived. We have been in an ambulance with levels higher then that. I know for a fact they were not that low when we got in the car, once things get bad they get bad fast. We have been let out now, not because she is well enough to be out, but because there is no place worse for someone with a crappy immune system then a hospital, the hospital is also not really able to provide 100% gluten contamination free food, so home is better. We had to beg and plead, but yes, she is home, with twice daily visits for IV meds. She is still very sick. Pneumonia. Her blood tests were repeated many times already, and it seems the day we came in is pretty much when the infection started, because the level of infection was low, so we caught it fast, caught it early they say. But how is that possible when she went from playing hide and seek in the bushes to being pretty much out of it in about 3-4 hours?

Celiac disease absolutely sucks. Pneumonia also absolutely sucks.

-Linda

Mixing with the gluten kids – No problem!

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We have been gluten free for over 2 and a half years now, the house, pretty much as long. We have ALOT of play dates and people over at our house, why? Because its easier. Here Celiac kid can play without supervision (gluten supervision), here, she can put toys in her mouth and touch whatever she wants, and there will be no issue what so ever (as long as people wash their hands as they arrive). I find that mostly, kids are extremely accepting of gluten free. I never tell anyone that the food they are about to eat is gluten free, why would I? You wouldn’t hear the host of a dinner part serving up pasta and saying ‘THIS is pasta made with GLUTEN’ (unless they had intolerant people there). Kids who visit my house generally eat what I serve, often ask for more and never even realise they are eating gluten free. Adults at times will be more hesitant, they take a bite of something and analyse it, like its a wine tasting! Then they look up and utter with surprise ‘its good!’. Like what, they expected us to eat disgusting food? It should be said here that I buy very few ready made gluten free things, I make all food from scratch and we eat a generally healthy diet with only a few processed things thrown in. But still, Im surprised that so many adults seem to think we live on some kind of starvation diet. If I had a dirham or zloty for each time someone asked me ‘but what do you eat??’ Id be very very rich by now. Its simple really. We eat exactly the same as anyone else, only our food is generally healthier (because I read every label and scrutinise it like a scientist), mostly organic, and always gluten free. We eat pasta, pizza, bread, hot dogs, you name it, we eat it. Except maybe liver. We aren’t to keen on liver. Like I said, kids don’t seem to care, they eat and move on.

We had one mum in our school who point blank refused to let her kids eat gluten free. My sons lovely teacher had asked me to bake for the class for their Christmas party so that his sibling would be able to take part in the open day same as the other siblings and mums and dads – the previous party I had ended up holding her standing by the door as there was a gazillion kids running around with cupcakes (poison) in their hands. I was so touched to be asked, what a kind gesture. So of course I went all out. My friend Katinka helped me bake brownies and cupcakes and biscuits and soft cake. The only mum who knew I was baking gluten free was the class rep at the time. She was obviously not happy as she was the one who usually baked. She sent gluten cupcakes for her kids, I overheard her saying at drop off ‘my kids wont be eating any of that stuff’ (meaning gluten free stuff). Talk about judgemental! At the actual party everyone ate, parents, teachers, siblings, kids, not a single person noticed they were eating gluten free! One mum said the brownies were the best she’d ever had!

Im guessing if we had made some kind of announcement about everything being gluten free the reaction would have been different. Kids however, are so awesome. To them, cake is cake, no matter which flour you use! If they ever ask, I explain, and all the kids that come to our house know I make awesome pizza and snacks. I only wish adults were as open minded!

-Linda

brownies clip art

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Celiac runs in families…..

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I need to talk about Celiac disease today. Maybe its the lack of glutenfree UAE meetings or the lack of interviews this last month, but I really need to tell people about this.

Why? Because I DIDNT KNOW. And IF I had known, our life today, could have been so very very different.

Celiac disease is genetic. You either have the gene or you don’t. Now, here is the tricky part, you can have the gene, and never ever develop celiac, because when you are born, the gene is not active, its just THERE. Then, at some point in your life, it may (or may not) ‘trigger’ (become active). For some people this happens after a major illness, surgery, a period of immense stress, for many women it can be triggered in pregnancy or childbirth. Some remember getting ill after losing a significant other. It really can be anything. Celiac has so many variations, one glove never fits all.

So, once Celiac is triggered and the person gets ill and hopefully diagnosed, then what? Then you need to test all the relatives, in some countries all first degree relatives are tested as routine, in others they only test those who may have symptoms. I personally think you should just test everyone, because while one celiac may have 20 symptoms, another may only have 1.

If a relative tests positive, then obviously that person will need to go on to have the biopsy and have Celiac confirmed. But if you test negative…. that is NOT the end. Please remember, the gene can trigger at any time. So regular screening is necessary. Some like to test yearly, others test if they feel unwell, others do a genetic test to see if they carry the gene (if you don’t have the gene, then no further screening would be needed), others still just go on a gluten free diet to prevent getting to sick in the event that the gene triggers.

Very often when someone gets diagnosed, testing on family members starts and it turns out Celiac has been in the family for forever with grandparents, aunties and cousins also being diagnosed. Some relatives may point blank refuse to be tested. ‘Ive been fine all these years….’.

Ask your Dr for a leaflet or a family appointment so that everyone can hear it from the medical professionals themselves.

If you are an undiagnosed relative of someone with Celiac, its important to mention this if you are ever under medical care. You may be in hospital with pneumonia and think that its not important because you were tested 6 months ago. but it IS important, always tell the Dr.

Celiac disease doesn’t have to be a big deal, the earlier its caught, the sooner you start the diet, the better. The longer it goes un noticed, the more damage it will have time to make. Some reversible, some not.

Are you Celiac? Share this information with your relatives. Often.

And remember, a blood test for Celiac will be negative for anyone already on a gluten free diet or anyone with an igA deficiency. Not all doctors know this! Find one that does.

-Linda

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Things make so much sense in hindsight!

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Screen Shot 2013-11-20 at 12.34.24 PM

Thinking back, of all those things, the days out, the screams in the car on the way home after having eaten Pizza, me in tears thinking ‘another family outing ruined, why do I bother’.

Is there any guilt? HELL YES! I feel guilty all the time, there I was, angry and upset and frustrated with her, and there SHE was, obviously (in hindsight) in PAIN and having a full on reaction.

Any trip in the car was a nightmare, I often had to use all my strength to force her in to her car seat, we had the back arching and the screaming. Funny now that I think of it, I used to give her biscuits to make the car rides easier… and the calm never lasted! I actually cringe at the thought now. POOR POOR girl! Again, this is why I do what I do. Because we just didn’t see it, we just thought we had a ‘very angry child’, we had no idea that she was ILL. We had never heard of Celiac disease. In some ways I feel we failed as parents, simply because we were not educated enough. Its every parents duty to know about ‘stuff’. It took for vomiting and diarrhoea to become so frequent we needed weekly IV’s for us to realise she wasn’t just an ‘angry kid’. In our defense, the doctors didnt spot it either. Our peadiatrician was always commenting about her big big stommach and skinny skinny arms and legs…..

Another DR in the ER SAW her stomach literally ballon up after eating (gluten) and told me to tell the paediatrician upstairs, but still no connection.

Obviously…. in hindsight…. its all as clear as glass!

Hope this blog may help someone else to not have to see these things in hindsight. With over 95% of Celiacs remaining un diagnosed I bet we all know at least ONE undiagnosed Celiac. Maybe your neighbour has an ‘angry kid’. Hit share, hit like, here or on other Celiac blogs posts, help us, the Celiac community, to reach other families like mine, maybe if we had had our diagnosis sooner things would not be the way they are today. Maybe we can prevent that happening to someone else.

Fingers crossed.

-Linda

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3 weeks in school and only 1 sick day!

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So little miss has had a cough, a sniffly snotty nose, then a pretty bad cough which scared me half to death as she was doing her rapid breathing wheezy thing that usually ends in a hospital stay, and then got better – ALL ON HER OWN!! And no temps, at all!!? This doesn’t happen. Fluke..? Perhaps, but all I can say is GO IMMUNE SYSTEM 😀

Just had to share the good news as I know many of you are wondering. Keep those fingers crossed!

-Linda

Touch wood and all that, but so far so good.

Contamination, what happens?

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Just like all Celiacs are different, so are everyones reactions. There are 200-300 (depending where you read!) documented symptoms relating to Celiac. Very often we talk about what happens if a Celiac eats gluten, but what about contamination, not really so much from eating, but from the environment or contamination somehow in the kitchen?

Yesterday I picked up a grumpy child from school. She told me her tummy had hurt during the day. Knowing what this means I was instantly ‘on my guard’. When she’s been contaminated we walk on eggshells…. We got home, there was some wind. Hey, this is a gluten free blog discussing celiac, so Im just going to say it, there was farting. I call the farts gluten farts. See, there is normal farting and there is contamination farting. The contamination one is sometimes deadly. You smell it in the car and know you got to get home QUICK, because soon the pain and crying could start. OR, like yesterday, its not so much the smell, but the amount of actual air! My tiny 4 and a half year old can do farts that last like 5 seconds! Then she laughs, and blames her brother, or daddy, or the dogs. Then she does another, and another. I guess the bloating has to come out some way. When you are 4 and a half, long loud farts are pretty cool. Not so much when you are a teen I guess!

Then there is the reason we walk on eggshells. Her mood. The smallest thing can make her angry or upset. From angry, we have a very very thin line, if crossed we have a tantrum. This is not a normal tantrum though, this is a gluten tantrum, and in a gluten tantrum no telling off, pleading, time outing, or reasoning will make any. difference. whatsoever. There is a reaction in her brain, its something she can not control. You just have to reel in all those feelings that you yourself feel, bite your tongue and try to be as nice as you possibly can, preferably before the line is crossed and the tantrum comes. You can discipline bad behaviour, but you cant discipline a reaction in the brain! Im not even sure of all the ins and outs of what happens in the brain, but I asked some of my adult Celiac friends who also suffer emotionally when contaminated. Linsey says she feels so emotional she cant help but cry. Once she said she felt so down all she wanted to do was hurl herself out of a window. Mel the same, she called me in tears one day and said, ‘if this is how A feels, then please go easy on her, because I cant stop the tears’! Because how, if an adult feels like that, can we expect a 4 year old to understand whats going on and try to ‘be nicer’? Remember, we are talking about contamination here, not eating something with gluten ‘on purpose’, if A or Linsey or Mel ate something with gluten in it the reaction would be far far worse.

This morning the mood continued. She didn’t want to put her jacket on, she wanted help, then there were endless tears, endless. I know my girl, and most of the time I know which is gluten behaviour and which is not, but its hard to parent a child like A when she’s been contaminated. Its also hard to try to explain to the sibling why sometimes the celiac kid may not get a time out when at other times she would. Sometimes I get it wrong, sometimes I think she’s just being a stubborn 4 year old when in fact she is having a reaction. All you can do is try your best, and dish out extra cuddles as often as possible.

So what happened yesterday? Why was she unwell? She eats only food from home, her table is wiped down by adults before she sits. Who knows, there could have been a crumb somewhere, maybe she held hands with a gluten eating kid that hadn’t washed properly, maybe she stuck her fingers in her mouth. Maybe it was the yogurt that she had eaten the night before, because although usually A’s reactions start within 30 minutes or so, they don’t always. These things happen, they will happen from time to time, all we can do is try as hard as we can to prevent it. There is no blame here. I mentioned it to the teacher this morning, but that was that. No matter how hard you try, sometimes it just happens anyway.

So the next time you see me with my hand wipes cleaning the shopping trolley handle or the table in a cafe or my child’s hands, please, spare me the eye roll and mind your own business, this is what we do, to try our best to keep our girl healthy. And no, a little bit of exposure will NOT make her stronger.

-Linda

tantrum2

Just a small add here, please remember, that even for a celiac who doesn’t react as strongly as A does, there could still be damage on the inside after being exposed, so when we prepare foods for a Celiac there is no ‘how sensitive are you?’ coming in to the equation. We need to be 100% strict no matter what.

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Before we were diagnosed……

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Before we were diagnosed… life, simply put was hell. Most days ended with me in tears, some days even started with them. I am not a very patient person at the best of times, but a child who screams all the time…. who is NEVER happy… no matter what you do! You just learn to tune it out! I was walking around like a zombie. I got used to evil looks from other parents (CALM YOUR CHILD FOR CRYING OUT LOUD), comments in malls (Oh its YOUR child thats been screaming for the past hour *smirk*), having to leave cafes, restaurants, play dates, birthday parties. Never being able to stand STILL, if I moved, it wasn’t to bad, if I stopped…

Obviously we all suffered. Big brother suffered as much as me, if not more. Poor boy, always had to cut things short because of his sister. Didn’t get the attention HE needed, because we were all so pre occupied with the screaming, with the shushing with trying to stay sane and keep it together.

Its hard to look back, and the memories fade, but its important to remember, its important to TELL these stories, because there are still so many more kids out there like that, ones who have yet to be diagnosed, parents at the end of their tether about to have some kind of meltdown….

So I wanted to show you this drawing, its by my son, he drew it when he was in FS1, a few months before his sister was diagnosed. The comments in the picture are by the teacher.

-Linda

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