We had some up and down periods this week with Ariella and her autism. She very excitedly befriended a four-year old boy up the road from us. The other day while they were out in front of our house playing he wanted her to come over to his house and play in front of his garage. Steve met the boy’s father and we allowed her to stay for a bit, after all she was still in eye sight of Steve. For the most part that is. I do not know how we could have prevented the small slip up that occurred over at this new friend’s house. It did not seem appropriate to bombard the father with her autism diagnosis upon introduction but that would have helped.
You see, while over playing in the boy’s garage, the little boy went and got a box of Cheezit crackers. Cheezits of all things. Wheat and dairy in those. She helped herself to some of course because she did not know. When we found out (she enthusiastically told us all about it when she came inside for lunch) Steve and I just cringed. We have religiously kept her gluten and casein free (found in wheat and dairy) for months now. I said to Steve, “well, I guess we shall just wait and see.”
I should also mention how awful this whole thing made me feel. I looked at Steve and wanted to cry. I felt like we are so weird, like freaks or something, the whole family being gluten free and all. Most people do not understand autism let alone why anyone would consciously give up all forms of wheat. In one split second I realized how strange we might look to all of our new neighbors. The rainy weather keeps most people indoors for weeks upon weeks and we have rarely seen our new neighbors since moving in until this week. This week that has brought several beautiful days that just pull you outdoors to soak up some much-needed vitamin D whether you want to or not. I began to fear meeting anyone and what that would bring.
We love Ariella beyond words and hardly ever notice her autism; until we are around others. Then it sticks out like the biggest sore thumb ever. I began to feel sorry for myself and my family and asking that horrible question, “why us??”. Why our only daughter, why her health (she has other health issues I’ve never mentioned here before), why do all of our children suffer from some sort of wheat intolerance? A year since her diagnosis and I still seem to be not wanting to accept it.
I was skeptical as to what would happen with Ariella after she gobbled up those cheesy crackers. Would she react? Or would she be just fine? We certainly have seen some amazing changes since we removed wheat and dairy from her diet. To answer those questions, she did indeed, without a doubt, react to those crackers. Within a few hours her mood completely deteriorated and she became aggressive, withdrawn, and not very responsive to communication. She began to stim quite a bit as well. (Ariella tends to hum and pace on her tiptoes when she stims.) Her bowels gave her some grief too. The final symptom that we have not seen for months and months now was her insomnia returned. Had I not seen all of this for myself I might not have believed it. Today is the first day she is seeming better since the whole incident….. Four days later.
Where does this leave me? I obviously need to be more careful and open with others. We explained to her to always ask mommy and daddy before she eats anything. This doesn’t mean she will though, after all, she knows gluten makes her not feel good but she does not know what has gluten and what does not. Also, I do not know for sure if she has the ability to convey this to others outside of her family.
I struggle with letting the world see her autism. I am not ashamed of her, just saddened by it. When others notice it it hits home what we deal with. I also do not want to see the pity in other’s eyes. Nor do I want people to think she’s odd because to me, she is the most beautiful person I have ever met.
This is definitely a more serious post for me. It is way out of my comfort zone, publishing a post like this. But stepping out of one’s comfort zone is good, right? But, I think I am going to wrap it up though as writing it has made me tired and I do believe it might be my longest post written in four years of blogging!
{ 10 comments… read them below or add one }
I have epilepsy. I also (unconnectedly) vomit for days if I eat wheat – and a long list of other things. I have pernicious anaemia too which, before the invention of B12 injections would have meant (and this is until quite recently) I would have gone blind, then mad, then died.
With the first – I had my first fit when I was thirty so I know a before and an after. I know I would have found it difficult to be with someone who kept falling over.
With the second – I know I used to think people who said they couldn’t eat certain foods were being fussy – now I know different and am ashamed that I used to have no sympathy.
With the third – fortunately it was picked up in time but I think of all the women through history (and pernicious anaemia does tend to affect women) who have been hounded and killed as witches. I suspect there may, with some of them, have been an underlying medical problem which no-one then understood or knew how to deal with.
It’s pretty hard being ‘different’. I think it must be pretty hard for our families – after all, they are the ones who have to pick us up, explain, reassure.
I’m wondering, what with the quality of home-printers now, whether you would be able to construct a sort of impersonal leaflet, a standing back to explain the background and the practical things people can do to help (or make sure not to hurt!) Ariella – something you could give to new friends as you go along.
If you are staying for a long time where you live now, it will get easier, I am sure. It’s the initial explaining that’s difficult. There used to be a boy in our street with autism. When we first met him we got cross because he delighted in throwing sand over our picnic. At least, I got cross. I think my husband immediately knew better. Once I too understood, he was just ‘himself’. Everything was ok even when he behaved differently from other children. It was just a matter of getting over the first hurdle.
(Incidentally, there seems to be good help for children with varying levels of autism / aspergers where I live and, by the time he was in his teens, he held conversations and went out on his own and seemed to find a place in the world with more ease than we would have anticipated when we first knew him – though I know things don’t go as smoothly for everyone).
Best wishes. It’s hard, I know. I’m sure it will remain hard in lots of ways – but I also think many things will get easier, the more people know you and your family.
Esther Montgomery
Thank you Esther for this kind and heartfelt comment. It always amazes me by the kindness and compassion found in the blogging world. I have had to re-read your comment multiple times before responding to it. I’m truly sorry to read about the ordeals you have/are facing with your health. Have you ever noticed your wheat sensitivity affecting your epilepsy? I am continually surprised by how much this can wreck havoc on other areas of our health. For instance, Ariella has a chronic blood disorder that causes episodes of jaundice followed by her being very anemic. Since removing wheat and dairy from her diet this blood disorder has improved tremendously. That in and of itself has been almost like a miracle. Never mind the impact it has had on her autism.
Thank you for the suggestion of making up a leaflet. I actually really like that idea as it would make explaining everything so much easier. It would also help to eliminate any accidental slip ups like occurred the other day. I know for myself, I would feel horrible if I inadvertently fed a child a food that made him/her sick. So, a leaflet would indeed be very helpful.
Again, thank you for your comment. Best wishes to you and your health as well.
XoXo
I work with adults who have developmental disabilities so I understand how something small can have such a huge impact. I also understand how you don’t want to share Ariella’s problems with people she just met. (It sounds like you and your husband are great parents for this little girl and your other children.) Why not just tell people that she has a lot of sensitivities to food and ask that if she wants a snack to come home? As you get to know them better they might ask about what she can eat and then you can explain more.
Thank you Kymberly for your comment and suggestions. I like your idea of explaining the food sensitivities first and then eventually going into greater detail as the time seems right. My husband is pretty sure the parents of this little boy can probably already tell there is something a little bit “different” about Ariella. But still, approaching the subject is a difficult one. Again, thank you. All of these comments have been so helpful.
XoXo
Cynthia, I feel like I should respond to your post, but I’ve not walked in your shoes so I don’t know what to say. I just want to give you a big hug. You’re walking on a rocky road and the climb is all up hill, but I have a feeling if anyone can reach the top it will be you. Keep looking up.
Thank you so much Granny.
You always put a smile on my face and warm my heart. <3
I can totally relate to the sticking out like a sore thumb. My son is ADHD, MMR, and has some autistic tendancies. We must limit his diet as well. With ADHD it is no sugar, dairy, and they have suggested we try gluten free as well, but it is just too expensive.
It is so hard when we go out in public because he is so different from the other kids. People don’t understand. They try to tell you things you have already tried. Like if you get him in school that will help his speech. My son has been in school since he was 2 1/2. This is something he was born with, and not of my doing, but people just think that I did something wrong.
I keep my head up and try to give my child the best life I know how. If you need anyone to talk to or have any good advice, don’t hesitate to respond back.
My heartfelt thoughts are with you, your daughter, and your family! My son is a 20 year old 13q partial trisomy; and since he was 2 years old, it has been just him and me. When you have a special child, so many thoughts, feelings, and challenges are always there………always present; making you question everything; past, present, and future. I understand your questions in telling neighbors, new neighbors, too much information. It is a matter of safety and privacy for what your child is going through. There are no books, no guidelines, no previously cleared paths for easy transit. Making your way through this life with them is all new country; as everyone of them is unique in their own way. It has been a bumpy road for me and my son, as his physical disabilities have been major ones requiring major surgeries. His experience within the public school system has been less than adequate so I pulled him out and got him onto an online school, which has helped immensely.
Long story short, all I can offer you is a comment (a mantra for me) that a friend once said to me in one of my down and out moments.
I was complaining about God testing me, the whole why me series….when quite calmly she said,” Christina, God does not test the weak….where is the fun in that”. As crazy as it sounded….it made sense to me. So hang in there Cynthia, you are not alone and feel free to talk about it anytime, because believe it or not it helps all of us. Best wishes
Thank you for sharing from your heart. I often find people to be more understanding once they are educated-myself included. It is so hard to understand what another is going through, especially when it maybe so different from what one is familiar with.
Thank you to everyone for the latest comments. Each and every comment has meant so much to both me and Steve. I am working on replying to each one. My internet is spotty today so I will get to all of your as soon as I can. Thank you again! XoXo