The following article is a guest post by Aniya Adly in honor of Autism Month.
This is a personal account of my son Sammy, who is autistic, and what it’s really like to live with and bring up an autistic child. Sammy is now a teenager, so I’m referring back to his younger years.
Sammy was such a content baby, too much perhaps. He would sit quietly for hours. Around the age of 14 months, there was no speech and his behaviour seemed to be repetitive. The repetitiveness was only slight, so I put it to the back of my mind. The talking didn’t bother me too much as his older brother didn’t start talking until around 2 years old. I also considered the fact that my children were learning two languages (we are a bilingual household).
As time went on, there were several oddities. The repetition continued, and he tended to continuosly turn objects in his hand. My sister-in-law (a nurse) would point these things out to me often–much to my annoyance–but it annoyed me because I knew she was right. This led up to a series of events until the day arrived that turned my life upside down. The look on our pediatrician’s face was very worrying. When my husband asked what was wrong, the answer we got shattered us and all our dreams: AUTISM!!
That same afternoon I made some homemade biscuits. I don’t know how, but that was the state of shock I was in. My adventure was about to begin. At the time, I could not put into words how I felt, but in later years I realized that it was a form of bereavement, the only difference being living with a person who was still in life.
The trials and tribulations we (my husband and I) had to overcome and live with for the many years to come were just beginning. I was living in Italy and that made things more difficult — autism wasn’t even heard of. My mother sent me as much info she could from the UK via the National Autistic Society. She warned me that I’d better sit down when I read it (My mum is very direct. Thanks mum!).
So after reading everything and anything on autism, we took Sammy for routine examinations and various tests, which all proved positive where the autism was concerned. The various medical centers often frustrated me. Some of the worst experiences were having contact and seeing other suffering children (most of them with physical handicaps). This really got to me initially, but I kept plodding on.
Autistic children tend to isolate themselves, so when they’re young it’s important for them to integrate and interact with other children. Here in Italy, nursery school children must be at least three and out of nappies. At the time of his diagnosis, Sammy was two and a half and not really out of nappies. How would I get him into a nursery school with his condition? We made an appointment to see the local school authorities and spoke with the psychologist and psychiatrist. We were told school admission would be improbable. I flew off the handle. I insisted that my child MUST have a place at nursery school since it was important for his type of syndrome. I stressed the importance of being around other children and I refused to budge. I can remember my husband sitting with his jaw dropped. He’s the one who usually complains, not me!
Shortly after this appointment we were told that Sammy could go to nursery school the next week. I then had the job to get him permanently out of nappies. I did that sitting in the bathroom with him until he did what nature told him (sometimes for hours), and praised him immensely. He was out of them before the week was up and ready to go to school.
The other children loved Sammy and he almost became their mascot. Upon arriving at school, I would hear the children chanting “It’s Sammy! Yay!!!” That was lovely, especially since kids can sometimes be most offensive.
Sammy has always made progress and the nursery school years were good for him. We also found a lady who privately came to the house to do therapy with Sammy (at this time it was the lovas method). She helped with basic skills, which helped Sammy with many day to day tasks. Autistic children don’t learn by watching and imitating like ‘normal’ children, so most things have to be taught to them. All this is very absorbing and I can remember thinking “How can I do all this?”
The rest of my day was pretty hectic, to say the least. Sammy’s brother, Ben, was two years older than Sammy. Ben suffered as much as my husband and I did. Ben wasn’t getting enough attention and often acted out to get more attention. I hated picking up Ben from school, as the teachers always had something to complain about. And I hated the thought of Sammy coming home, too. So I had to deal with my emotions of guilt, as well. Not an easy matter, but when everything seems a right mess something extra won’t hurt, will it!?
The years that most parents enjoy with their children I missed out on. Ben didn’t have the little brother to play with like his friends. My friends would usually take their kids to the playground after school and sit and chat. They always asked me to go with them. Sometimes I would, but it wasn’t much fun running around after Sammy the whole time whilst they sat there and chatted. The fact that my friends didn’t understand it was fun or relaxing for me annoyed me. But sometimes I felt mean, especially for Ben as he really wanted to be able to play with the other kids.
Sammy had several ongoing traits at this time. One was shredding newspaper all over the house and another was screaming his head off. You can imagine the fun I had when I took him into town. With autistic children, it’s not always obvious that they have some kind of handicap unless you watch them for several minutes. People in town would look at me disdainfully as though to say “What a spoilt brat you have!”
I had to really psych myself up for the trip into town (and thanks to Mother Nature for giving me a tough personality). I could usually pull it off, but on a bad day I would try to hide any emotion while out, then burst into tears as soon as I got home. Churches, the cinema and libraries were among places I could never take him. (Several years later we took Ben to see his favorite team AC Milan to a Champions League game. Sammy came, too. Sammy could shout and scream as much as he liked, but he was silent the whole time, enthralled with this new place.)
Schooling is an important part for any autistic child, and as I said, interaction with others is especially important. Home life is important, too– they need a set of rules to follow. While no autistic child is the same, for most it is important to show them who is boss. Autistic people are prone to habit. They don’t like change. I would make sure I walked a different way to school and fed him something different despite the fact it caused a stir. It would have been very easy to get into ritualized habits to save the uproar. Changing the routine definitely helped, but it took a lot of time, energy and emotion.
Sammy’s comfort was in food. In his younger days, I had to hide food (especially sweets and fruit) or else he’d eat the lot. Sometimes I’d hide things and forget, only to find them months later in weird places. I too have isolated myself — almost becoming autistic (so to speak). The strain is unbearable at times. The thought of the future and what lies ahead – the fact that life is different to what it should have been – all weigh on me heavily. But when I found myself going off track, I had to give myself a kick up the backside to get on track again. Easier said than done.
I will conclude in saying Autism is a mean syndrome that affects many families — and destroys most of them. But not all is lost. When you have to deal with something bigger than yourself, you become more sensitive and can see the real values of life. It can make you a better person — not a nice way to grow, but that’s life…
Sammy is now 19. He doesn’t talk, but he is a happy person. He has recently started a gluten/caesin free diet. It is a long process and I haven’t noticed any benefits from it yet. He is also following a total mercury detox to counter the vaccines he had as a baby; there has been much talk about vaccines and autism lately. It is still early days and my feet are firmly on the ground. I don’t expect a miracle, but there’s hope the diet and detox will help.
Other things to add: I still have to wash, dress and bathe him. When he’s ill, I have to work out what’s wrong. He doesn’t understand danger; I hold his hand when out we’re out or watch him closely. He is frightened of dogs, especially small ones (beware of those pugs! lol!)
image credit: http://x1c.xanga.com/8e3f912354135266385985/z212472321.Gif
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That’s odd. I was lying on my side to read this, and I only feel the tears from my left eye. I guess I have an insensitive right eye. That’s balance.
You’re awesome, Aniya. As Marisa said, we can’t even begin to comprehend what this all means, but I can tell you I’ve met autistic children, and this is now the closest I’ve ever been to getting it better.
My mother gets the mother of the century year award (1900s), so I’m nominating you for this century.
Rock on Sammy! Rock on Aniya! Baci brad
[...] Aniya wrote a heartfelt piece on how difficult having an autistic child was for her family. [...]
Dear Aniya,
No one, but absolutely no one who has not had to live with a child with Sammy’s problems, or with other problems, can really fully comprehend the level of personal sacrifice this involves for the parents.
I live in a society which neither accepts nor supports autistic children or other problems, for example, children with Down syndrome – but am aware that this is true in many countries in the world, which really leaves it up to the parents to deal with it in the best way they can.
I have some personal experience of living on the periphery of a similar situation – the parents’ denial and lack of personal courage to confront the issue openly, to find the best solutions for their child, or to make any sacrifices is a case in point. Posts like this are very much needed and I love you for doing what you have to do and being such a wonderful and always cheerful person to be with.
I am very proud to have met you and got to know you on Twitter and in Second Life, but this post and the insights it has given me about your life and the way you deal with Sammy make you a very special person to know.
Marisa
Marisa,
Thank you for your positive comments.
Amanda
-Community Manager, Parentella
Dear Marisa, it means more than a lot reading your comment – and I know on other occasions you have made your mark telling me what you think and I am so so grateful. It’s people like you and others that take an interest that really make me or us feel special and/or the struggle we have. I really hope in someway my account can also help other mothers/families and it’s true what you say about people’s sense of shame or embarrassment to cope with autism, it’s very understandable it does push you to your limits, I’ve been there and come back again ha ha.. but if I could be some sort of ambassador (to speak for) for other mothers/families then so be it.
I would also like to thank Shelly who asked me to do this and Amanda who I don’t know but for hosting the post
Thank you Aniya.
I will be sure to let Shelly know.
Amanda is our community manager and she manages the blog on the site.
Aparna
By the time I got to the 3rd paragraph, I could feel that this is the best thing you have done for yourself with regard to pouring it all out to be heard.
No parent will go through life without sacrifice, and the problem, if it is at all a problem, will always be there. Time is testing; each second that passes is time well spent for a parent who has to deal with two kinds of situation: autism and normal.
We once had a teacher who specialises in teaching austistic children and she was asked by parents :”Are you also austistic?” That is just how ignorant parents can be.
If I have to take an analogy: ceasarian and normal birth. Women who deliver their kids through normal birth will not understand why it would take months for other women with ceasarian births to recover. It takes months for the stitches to heal, and the first time I had to get out of bed (emergency ceasarian), I thought my body was chopped into half.
But as soon as I saw my baby and I had the chance to feed her, the pain went away. I can see how you are able to spend so much time with your son, it is the touch of his body upon your hands and against your body that dissolves all the frustrations, sleepless nights and uncertainties away.
Hanifa K. Cook