Our Special Little Man
A day in the life our little man is very different to what we thought it may be. Everything was different from day one. It was a different pregnancy to our daughter and then I was ill and in ICU at 27 weeks with a virus still to be explained. During the labour I spent most of the time walking otherwise he decided it was time to rest too. Then the big arrival, with the cord in knots and wrapped around his neck, the wait was over. Yes a perfect little boy, what more could you ask for, after having a girl. The experience was very overwhelming as most parents would know.
From this day our lives changed. We now had two beautiful children, and our little man was a very content baby. Breast fed like a trooper, (an experience that took 4 months to sort out with our daughter). He was generally contented, slept well, rarely unhappy and if he was, it was mum that was the soothing one, as it goes with a lot of boys. Everything was going great and his big sister was helpful as often as we would allow her to be.
Then things were going to change, unknown to us. This beautiful boy was going to be different to so many, and we had no idea. The first time I thought there may have been something not quite right is when he didn’t respond appropriately to his 7-9 month hearing check with our Health Nurse. We were told to keep an eye on it, but not too stress, so that’s what I did. By 12 months his speech was no where near what his sister had been saying at the same age, which concerned me. Mum, um was the only thing he said. At this time he also got a bad cold and things that he was doing or had started to do, he then refused to do. He made lots of noise and many people said it’s a boy thing!
By 15 months we were referred to a Speech Therapist, Audiologist and soon after the Occupational Therapist. When he then started to not co-operate and meet the appropriate requirements, the mother instinct was kicking in – I knew it was worse than what we thought, but I didn’t know what. By 18 months we weren’t getting any answers, so I decided to get a referral to a Paediatrician – a 4-6 week wait, it felt like it was going to be for ever, and all I could think of is our little boy is not what he should be and I can’t do anything to help him. I spent many hours crying, not being able to sleep and lost my appetite. I just wanted to know what was ahead and no one had any answers, especially when my gut feeling had sent me in the direction of Autism as well as a very close friend.
Luck be it, at short notice we received an appt to have an Audio Brainstem Response (ABR) in Perth which is 2 hours north and would involve him being put under anaesthetic for the first time. Something we decided needed to be done to make headway. An ABR is designed to let you know whether he is hearing or not (a test we couldn’t get him to co-operate and do at our local hearing centre), by receiving the message. This came back all clear, so we knew that hearing was not the problem. Only a few days later we had the appt with a local Paediatrician.
We went to this appt with information from the Speech Therapist and Occupational Therapist that had been working with him, plus the Hearing Report. Within the first 5 minutes our questions had been answered, a long road was ahead. The Paediatrician, said “It’s not looking good, I believe its Autism”. He then did a brief questionnaire while observing Ethyn, which confirmed this. The next step was an assessment to confirm everything.
I thought life had given me a challenge already, was I in for a surprise? The challenges that were to come, were going to make life more frustrating by the day. The forms to fill out, the waiting periods, the everything is going to be ok, your doing everything you can, was making me more determined to do what I could to speed the process up. This involved lots of phone calls to find out who was doing what and being in contact with the Paediatrician on a regular basis, to ensure things were being done. I was not worried what they thought of me. We have a right to know what is wrong and as soon as we can.
During this period we started to do what we could, to make life easier. Ethyn only uses gesture communication which we understand or read into, but many others would not know where to start. He demands a lot of rough and tumble play and has a lot of sensory issues that need to be fulfilled every day. We also have a lot of frustrating times that involve tantrums. As you can imagine this would keep any mother busy, but then there is his sister, who is only 18 months older. We refer to having two at opposite ends of the learning spectrum – one demands due to the lack of stimulation related to ASD and the other demands as she wants to know more all the time. This can create problems everyday, and some days you wouldn’t even know you had two children.
Consequently as you have gathered he did come back with an Autism diagnosis. By this time I was glad it was over. We finally had an answer and could put the appropriate intervention into place. Was I wrong, you now have the next challenge, you know what’s wrong and can’t get the services to help him. Yes, that’s right, you have waitlist after waitlist with people telling you, that at just over two, you are lucky to have a diagnosis and its early days. I don’t care, all I want is my child to have the opportunity any child would ask for, to be able to communicate and be understood.
We are now on the hugest journey of our life, to provide what we can for our special little man who does not understand why things are so different and to make sure our gorgeous girl is still given what she is entitled to as a child herself. Some days I wish I could just stop the world and get off, so that I could see from the outside what others are doing, and other days I run around like a headless chook and don’t even realise how much I have done. I have days where life is very disheartening with lack of progress or answers that don’t help and want to give up, but I know this will not help our little man. It is no ones fault he is the way he is and we have to make the best we can of it, by providing as much opportunity as we can.
Everyday I keep looking for information and try things with him that I think may help based on what I understand. The limited services can make your life difficult, I refer to it as going to the Fruit n Veg Shop and asking for a product out of season, you get it when its available. Yes I know my journey is only at the beginning, but I also know in my heart if I do what I can to improve our sons life, then I can never look back in regret, saying why didn’t I do more. You can only do the best you can, with help and determination, and it starts with you, as a parent, deciding what you want for your child and your family, no matter what the circumstances are.
I wish any parent that takes this journey patience, determination, with tears of sadness when things aren’t happening and tears of joy and excitement when their child reaches a milestone. Believe me you need these to understand that you, as parents have been selected to help this special child for a reason.