Autism- Our story. (Long-The unedited and uncensored version.)

**MyFourCubs** · 22-03-2009 21:59

Autism- Our story.

Autism is a word that instils fear into the heart of any parent. Like Downs Syndrome or Cerebral Palsy, it is a condition that is generally well known but unless it touches you personally, not all that well understood. Although I had known a few people who had autistic children, I didn't really understand what it was or how children with autism were affected. To be honest, it wasn't something I thought about too deeply because I never really thought it could happen to me.

When my second child was born in January 2006, he appeared to all extents to be a big, beautiful, healthy boy. Delivered at 39 weeks weighing 3.85kg, Alexander seemed perfect. He brought forth the few tears that I have ever seen from his father's eyes. While exhausted from a difficult and traumatic birth, I felt relieved and confident that we had once again managed to bring healthy child into the world.

However, it was honestly within hours that I began to develop a distressing and unshakeable sense that all was not right with our boy. Alexander screamed from the second he was born and for the next several days at the hospital. Nothing would comfort him, to the point where I too was inconsolable and desperate for somebody to work out what was wrong with my son. The nurses declared that he "had wind, apparently the only answer that is given to Mums whose babies scream for no apparent reason. On day 6 when the midwife visited us at home, she found both myself and Alex hysterical- me forcibly trying to attach him to my breast, he violently resisting. When he finally gave in and fed from the breast he screamed inconsolably for hours afterwards. This would become a pattern that distressed us both immeasurably. By 6 weeks of age we were both admitted to hospital as I had developed mastitis. We spent 3 days with me spending most of the time sitting, sobbing in the toilet with the shower running to drown out his screams.

Despite the obvious feeding difficulties my son was having, the most alarming thing to me was that he genuinely did not respond to me at all, in any way. I could rock him, try to comfort him, but to all extents my efforts were fruitless. It was honestly as though I were not there at all. From only a few months of age I began saying to people, "I think he is autistic. I don't even think I knew what that meant at the time, but it was the only word that came to mind to explain my son's behaviour.

At 10 weeks of age Alex was admitted to hospital, (as he was by this stage going almost 24 hours between feeds,) and diagnosed with severe dairy and soy allergy. When he was offered Neocate, an oil based prescription formula, he took to it like a duck to water. Finally, it seemed that we were getting some answers. Still, while life began to slowly improve, I could not shake the feeling that all was still not quite right with our baby.

Up until a year of age Alexander (after spending a week at Tresillian Residential Unit to teach him how to sleep,) developed much like any other child. He sat up, crawled and walked, reached all of his milestones. He was a beautiful, happy boy who would smile for strangers in the supermarket. He waved, clapped hands, said, "Mum mum, Dad dad," and all of those things that you expect from a normal, social child. However, at approximately 14 months of age he began to quite suddenly and without warning, scream hysterically. I remember the first time we arrived at kindy gym class and Alexander literally began screaming and shaking, clinging on to me as though he was terrified. His teacher and I assumed that he must have been ill, despite the fact that he had been perfectly fine before arriving at class. We took him home and although I was now completely on edge, he appeared entirely back to normal. Without any knowledge that would suggest that our lives were about to change irreversibly, a knot of fear had quietly begun to form in the pit of my stomach...

From this day, the screaming episodes became more frequent. It could be the supermarket, play group, the local park. Without any kind of warning our son could be reduced to absolute, sheer hysteria and no amount of consoling would calm him down. The only way to stop the screaming was to leave- back to the car, back to our home. The closer we got to home, the calmer he became. We would sit in our driveway, my heart beating manically, fighting with every breath not to cry. I would watch him in the review mirror- calm, now. A little smile on his face and a glaze in his eye. It was in these moments that I began to despise him with a ferocity that frightened me. Why was he doing this to me?

As he approached 16 months of age, I gave birth prematurely to our 3rd child, a baby girl named Hannah. At this point, life with Alexander had become unbearable. I dreaded being alone with him as his "tantrums" were no longer confined to outings, he had become volatile at home also- any single thing could provoke an absolute melt down. Every request for outside help proved futile- it was generally suggested that Alexander's behaviour was a reaction to the birth of his baby sister. While all of the doctors, nurses and child health professionals seemed unconcerned, I knew that there was something else going on. Quite aside from the fact that his behaviour was in my mind nothing even close to normal, he quite seriously didn't appear aware that his sister was even here. The only thing to suggest that he was aware of any of us would be his complete hysteria if either I or my husband attempted to leave the room. That was the most bizarre thing as while we were in the room, he seemed to be entirely unaware of our presence.

Between the ages of 18 months and two, we tried everything and anyone, all in the hope of finding some answers. Most professionals and even friends dismissed our concerns with statements such a, "boys always develop later," or, "He seems like a normal toddler." Easy to say when you only see him for 5- 20mins at a time. At one point I was even told, "I think you want Alexander to have autism."

At 21 months of age out of sheer desperation, we even stayed a week at a residential baby and toddler unit. It was here that somebody finally acknowledged my fears. The unit paediatrician, within moments of meeting Alexander, stated that there was definitely something, "not quite right with him." He wrote a letter to our own paediatrician noting poor eye contact, variable levels of interaction and constant babble. He also wrote that he predicted that he would fall somewhere on the autistic spectrum.

Ironically, after pleading for almost a year for somebody to take my fears seriously, after these words from the paediatrician I cried for most of the week.

At 2 years and 4 months of age our own paediatrician finally agreed that Alexander had a severe speech delay and "probable Autistic Spectrum Disorder." However, he still felt that he was "too social and "too interactive" for an autistic child. That is one of the most common pitfalls I found in the quest for a diagnosis- everybody assumes that all autistic children are the same- they are "pigeon holed" with the belief that all children with ASD have poor eye contact, no speech, no ability to interact socially. The reality is that every autistic child is different and no one child is affected by autism in exactly the same way. That is why Autism is now only referred to as a "Spectrum Disorder, and children can fall on that spectrum anywhere from, "high functioning," to very severe, classical autism. (Classical autism is usually what most people envisage when they hear the word autism- this form of the disorder can be categorized by behaviours such as head banging; hand flapping, tip toe walking and little to no ability to speak of interact with others.)

Although the diagnosis brought an inevitable sadness, at the time it was primarily a relief. It was a relief to have some kind of an understanding into why Alexander was the way he was. He wasn't just a horrible child; I wasn't just a terrible mother. However, I wish that somebody had told me at the time that the diagnosis was just be beginning- that the grief, the pain and the loss of having the child that I thought that I was going to have would never go away. That while we would have many days, most days in which I would rejoice in the things that he did and love him for who he is- that would be days that I would have to force myself to love him despite it. As mothers those are not things that we even allow ourselves to think most of the time- let alone give them a voice.

**MyFourCubs** · 22-03-2009 22:00

While I love my son with every single bit of everything that I have- I LOVE him more than anything, more than anything in the world, he is so gorgeous and affectionate and he is so funny and beautiful when he wants to be but the reality that he has autism, that this is permanent is sometimes so shattering that it kills me. Some days I want so badly for him to be normal and I hate that he's not. I try so hard to be "ok" with it, to accept that he is who he is, and that without the autism he would not be himself anymore but some days it is hard. Some days I want to shake the heck out of him and say, "Be NORMAL ok? Please? I've had enough of the autism, just stop it," and in my head I pray so hard that I can see it, I can imagine him as a normal child- playing with other kids, talking and going to a Wiggles concert or carols by candlelight or Dreamworld without having violent hysteria. I can see it so clearly I almost believe that it's true until I come thudding back to earth again and realise that it's not. Every time I ask him something and have the question repeated straight back to me I am reminded of it. Every time I see another child his age and I am reminded of all the things he can't do and may never do. I have conversations with other children and it just hurts so bad that I am not having the conversation with him. I want to talk to him, PROPERLY, have him understand what I'm saying and willingly say something back.

Every day I am reminded of not just my disappointment, my loss but his fathers too- he was so happy to have a son, I still remember the moment he was born and I told him that we had a boy- I saw all of his hopes, his dreams, his plans plain as day on his face and who would have known in that moment as we cradled our beautiful, perfect 8lb 8oz baby boy that it was not to be? I see the same with his grandfather- Alex is his only grandson and he tries so hard to play with him and talk to him and although he tries hard and Alex loves him to pieces it is not the same. It is not what it should have been.

I feel like the worst mother on earth for thinking these things and voicing them, I feel such pressure everyday to love him for who he is, to celebrate who he is and I DO, I really do, but the grief and the loss never ever go away. I am proud of being a "Special needs Mum" and I talk to other mums of autistic kids and say, "it's not all bad, really," and it's NOT. With a SN child, autistic or otherwise, every small achievement is celebrated that much more. Simple everyday things become so special and I can derive such joy from simple things such as watching Alex's eyes light up when he sees Thomas the Tank Engine or his absolute rapture when he looks at the Xmas lights. I love watching him play with his sisters and knowing that he is teaching them too- about patience, and love and acceptance- just as he teaches me every day. It has made me a better person, I hope in that I see the world differently, I appreciate things that I didn't before and I have an incredible desire to make the world better- for him, for children like him, and for their parents. But it has also highlighted the dark side in me- the side that has no patience, no willingness to accept that he is "different," the mean mother who just wants him to bloody well stop screaming and crying and talk damn it like a normal person. That's the side I never want anyone to see because I hate myself then and I just want to throw it all in and let somebody else raise him who can do a better job.

I write this now as I feel it is a disservice to any other parent who has a child diagnosed with autism to pretend that it is easy. It is misleading to only speak of the good and not the bad- the difficulties, the obstacles and the heartbreak that comes with the diagnosis. I have had so many mothers read this story and tell me that I am wonderful, inspiring and I am doing a fantastic job. Thank you- but I am just doing the best I can and hoping to heck that it is good enough.

In the hope of helping any other Mum that may notice similar traits- in hindsight, Alexander displayed many of the classical symptoms of autism which, had we been aware to mention them, would have most likely received more of a response form his paediatrician. He exhibited obsessive behaviours such as lining up toys and getting seriously distraught if his toys were interfered with or disturbed. He showed repetitive behaviour such as pushing cars and toy trains back and forth in front of his eyes. At the time we simply thought he was fascinated by them and were happy that he was during these times happy and content. Not answering to his name was another big red flag- Upon telling his doctor this we had his ears tested. While we prayed for something that would explain his behaviour, (such as Glue Ear which is common and treatable,) unfortunately his ears were fine.

Alexander also displayed many sensory issues, such as responding violently to loud noises and becoming hysterical when confronted with crowded or noisy environments. I now know and understand why he would cry inconsolably in new or overwhelming situations- for an autistic child they are so overwhelmed by the various sights and noises that they are genuinely terrified. Our world is something that they find extremely difficult to absorb or understand.

While I was so angry at the process in which we had to go to achieve our diagnosis, the reality is that we were actually very fortunate- many children with autism are not diagnosed until much later- either because of a lack of knowledge that enables a parent to determine that something is wrong or more often, because health professionals are extremely unwilling to diagnose the condition under the age of 3. There have been many cases in which a child is wrongly diagnosed and of coarse this has caused enormous grief for both the families and the individuals concerned. However, the situation also arises that many children who desperately need help, or, "early intervention," are denied access to services. This is simply due to a general lack of funding in which there are more children then places available and resources are stretched. With limited funding and resources, help is limited to children with a "formal diagnosis." Once a diagnosis is obtained it still may take months or even years to access them.

At the present time, Alex receives multiple forms of intervention- Speech therapy OT, psychology and has just begun an early intervention program with Aspect. He also recently started PreSchool and is coping well beyond our expectations. He speaks many words and phrases (although much of it is echolalia- simply repeating words that he hears,) but is showing improvement every single day. With autism, like any other condition, we have learned to take each day as it comes. Like many autistic children, Alex does seem to be very bright, with a particular aptitude for music and counting. It is hoped that with the brilliant early intervention programs that are now in place, he will hopefully be able to attend a regular school. Obviously it is still early days. While it has been an exceptionally difficult and painful journey to this point, and will continue to be well into the future; the joy that we do receive from our beautiful boy is overwhelming.

I have shared Alexander's story in the hope of helping other parents who may see or have seen similar traits in their children. While I acknowledge that we are very fortunate to have such an early diagnosis, I also know that it was a result of my fighting for him every inch of the way. Despite repeatedly being told that I was "mad," or that he was, "normal," I knew with every inch of my being that he was not. However, I also learned that far too much emphasis is placed on being normal and too much stigma attached to those with "special needs." Autism is not a terminal illness. It is a condition that requires greater awareness and a greater level of understanding, from everybody, including me. I believe with all of my heart that our beautiful, strong and determined little boy will do incredible things with his life despite his autism, or perhaps, because of it. I just hope that I will be learning and gaining in strength and wisdom- that the good days will outweigh the bad. I know that he needs me and I have to be there for him, every step of the way.

To be updated- Page 4

http://i301.photobucket.com/albums/n.../Alextowel.jpg
At 5 months old- He was SO cute.

http://i301.photobucket.com/albums/nn54/glcksandthe3bears/alexcrawl.jpg
SO GORGEOUS- 1 year old!

http://i301.photobucket.com/albums/n...s/PB210036.jpg

http://i301.photobucket.com/albums/nn54/glcksandthe3bears/Alex0063.jpg
A dribbler! 14 months old

http://i301.photobucket.com/albums/nn54/glcksandthe3bears/DSCF1142.jpg
happy 2nd Birthday!

http://i301.photobucket.com/albums/n...s/DSCF1155.jpg
With Dad!

http://i301.photobucket.com/albums/n...s/DSCF1171.jpg
With his sisters

http://i301.photobucket.com/albums/n...s/DSCF1167.jpg
Up close- our beautiful boy!

Alex on the swing- 2 years 8 months
http://i301.photobucket.com/albums/n...s/DSCF1798.jpg

Alex on the see saw
http://i301.photobucket.com/albums/n...s/DSCF1795.jpg

At our wedding
http://i301.photobucket.com/albums/n...s/IMG_2395.jpg

**Miss_N** · 22-03-2009 22:16

Wow! Thank you SO much for sharing - Im not a parent, but rather a teacher who did a minor in special needs education and a final prac in a Special Education Unit!

Its so refreshing to hear a real honest story rather than a text book case...I didnt know children could be diagnosed so young and was amazed to read that you suspected something when he was younger!

Im so glad that your lil boy is getting LOTS of early intervention and that he is doing well at preschool!

At the SMALL school I teach at we have 2 children in Yr 7 with ASD. Both cope unbelievably well and I think a lot of this has to do with having commited parents such as yourself!

You should be so proud of the job you have done!

**Nowhere** · 22-03-2009 22:23

HUGS, Im sory to here that you guys have and wil continue to go through so much

I hope that with his therapy he continues to imrove and in time his autism may become an asset not a disability

Hugs to you and your family

I know you dont agreee with me on this one but I will say it again YOU ARE A GREAT FANTASTIC WONDERFUL MUM, and you do a great job, you didnt ask for your son to have ASD but he does and you have excepted that and are geting him the help he needs, You play the card you are dealt in life and you do a dam good job of it, dont ever let any one tell you difernt including your self

**KaM** · 22-03-2009 22:29

Thank you so much for sharing your journey so far . . especially as a mother about to embark on this journey . .

You have done and will continue to do a wonderful job . . we can only do the best we can . .

**JabberJaw** · 22-03-2009 22:38

WOW, that was so beautifully written, i could feel your love and heartache in the words you wrote.

You are a wonderful mother, you and your family have been through so much, many would have admitted defeat but you didn't and haven't.

Your little son was obviously sent to you, because someone up there knew you where going to be such a great mummy to him. He is so lucky to have you.

Your story makes my daily battles seem, well dismal. Thank you so much for sharing. I love reading truly heartfelt stories, it really snaps me back to reality and changes the way i look at and do things in my own life.

You are a wonderful mum, you are inspiring and yes you are doing a fantastic job.

Well Done, keep your chin up and be proud.

**bigglet** · 22-03-2009 22:41

Thank you so much for sharing your story - it was beautifully written.

I wish you all the best and you are a fantastic mum.

BTW - Alexander is GORGEOUS... oh my goodness, you just want to hug him so tight and never let him go.

**srguitargirl** · 23-03-2009 11:13

your story is written so well and I can see it helping so many people.

You are a fantastic mum who would go to the ends of the earth to help your child, hugs it may not always be easy but you are strong and Alex is the proof that you are doing a fantastic job those pic of him are just gorgeous he looks so happy and that is just the tip of the iceberg of all the work that you have put into him.