Meredith's story: "I just want him to be happy"
Meredith is a mum of 4 and a teacher at a Christian School in Newcastle, NSW. Today when she wrote to me she said that her week had been hard, and she hoped things were going to get better soon because she was 'running out of tears'.
I too have a son was an Autism Spectrum Disorder. J was diagnosed with Asperger’s Syndrome late, a little more than 2 years ago, at 12 years of age.
J’s diagnosis came at about the same time as my other son Paul, (then 13 months), began tube feeding for ‘failure to thrive’. Paul went on to become sicker and sicker. He was allergic to everything, had severe reflux, slow oesophagus muscles and what looked like a rare autoimmune disease. Specialists said that maybe they would get him to eat something by the time he turned 5. Paul vomited violently every day.
Our life was in turmoil. We were praying for healing by his second birthday, but things were looking hopeless. I was fearful that God might not answer my prayer in the way that I had hoped, and that I might lose him. Staff at my work were stopping to pray for Paul every day at 1pm.
I have seen many miracles in my life, my younger brother was healed from a brain tumour after the doctors told my parents there was nothing more they could do. I have also seen prayers not answered in the way I had hoped... My older brother Paul drowned tragically at 18, and though we prayed for the 3 days while he was missing that he would be found alive, he is living happily in heaven now.
One week before Paul turned 2, his tube was removed. He was miraculously healed. He had stopped vomiting, started eating a little bit, his allergies, asthma, reflux and slow muscles had all repaired. He had an endoscope, and there was no evidence of any of these things…not even any scarring, even though these things had previously been confirmed through tests.
The specialists all said that there was something significant wrong with Paul but that we will never know what, as it has just disappeared!
I often wonder whether Paul’s tube feeding was a part of God’s plan… in order to help him avoid extra unwanted toxins in his body until his brain was further developed. As soon as I was pregnant with Paul, I began praying desperately that Paul would be protected from autism. Unfortunately, he developed staph on day 4 and his tiny stomach had many doses of antibiotics to rid him of this horrible infection. God knows I couldn’t do this again!
Each day I thank God for Paul’s healing and pray that he might heal J also. I know God has the big picture and I trust Him completely, but at the moment every day is hard, too hard.
I am convinced God will use our challenges for good. As a teacher, I am able to help so many other families through all that I have learnt. There are so many families out there, struggling, alone….and they don’t all have God. I can’t imagine travelling this road without God. Throughout our journey, God has also been tweaking my fruits of the Spirit… patience, love, gentleness, faithfulness…though, I wish J didn’t have to pay the price for my learning.
When I was pregnant with Jacob, God spoke clearly to me. He told me ‘this boy is special’… At the time, I had no idea what He meant and I just felt ‘chuffed’. God knew then, my path ahead. Those words have kept me going during some of the darkest moments.
God doesn’t make mistakes, he knew it was going to be hard….but he trusts me to mother this child. As a toddler, J would tantrum and run away frequently. He just ran everywhere. We were living in Sydney at the time and I had no support. I would end most days in tears.
I remember in the St Ive’s shopping centre one day, J didn’t want to do something so he sat down on the floor and melted down. I just held his harness lead and waited. I will never forget a lady walking by saying ‘people like you shouldn’t be parents’. She had no idea how difficult it was to parent this child.
I remember another day, J running away at the zoo, toward the crocodiles, and I had to hand my pram and baby to a complete stranger to watch while I ran after him. Shopping trips were games of hide and seek, and we put another lock on the door every time he escaped our house (at age 2).
On another occasion J went missing in Westfield Chatswood. 45 minutes later, the police were on the way and security was preparing to seal the building. Both then and now, I experienced a lot of judgment from others. I know I shouldn’t care, but it is hard. I don’t want people to think I am a bad mother, I don’t think I am!
J hated music and group time at pre-school. Actually, he hated pre-school. I had to peel him off me every day. I remember the pre-school teacher telling me ‘there is something mentally wrong with your son’. J’s language wasn’t delayed, so every time I took him for assessment (age 2, 5, 8,) I was only told, there is nothing wrong with him. He is just ‘gifted’ and bored. I wish I had been able to get a diagnosis sooner as I am convinced that early intervention is the key.
The same week Paul’s feeding tube was removed, J slipped into depression. He is now heavily medicated. Our journey is so much harder than I could have imagined. Each day, we tiptoe around on eggshells, not wanting to upset J. We have good days, and bad days. Some days are very, very bad.
I keep thinking that things can’t get harder or worse…then they do. Self-harm and running away are regular events. It is easier knowing that God is with J, even when I can’t be. School and assessments are J’s greatest cause of anxiety, we are looking at starting him in a special school this term.
I will continue to pray for healing for J- whatever that is…. I just want him to be happy and able to function in society. I want him to enjoy the precious life God has given him, not for him to wish it gone. I want to learn to relax and not cringe every time the phone rings. I want to hear J laugh again.
My daughter Tahlia, (aged 13) has been amazing. God has blessed my greatly with her. She has had to help me care for J and Paul, and has walked alongside me during some really tough days. Paul continues to thrive. He is now tracking the bottom of the growth charts.