Katie Johnson, 35 from Lancaster UK is a Primary School Teacher and mum to Lily and son Joey, 5, who has Autistic Spectrum Disorder (ASD).
Katie contacted Autism Daily Newscast and asked if she could share with our readers how she helped Joey to walk when outside, she wanted to share her story in order to help others.
“Joey has difficulties in walking due to his sensory problems and we have had to work hard on getting him to walk longer distances and it’s now improving. At one point he wouldn’t even walk from the car park to the town centre.”
Katie told Autism Daily Newscast that when Joey was a baby he suffered from sleep apnoea and recurrent ear, nose and throat problems. They therefore assumed that his developmental delay was due to this. However as time went on Katie told us that she knew something else was wrong and that she suspected Autism.
“By age 3 his health was becoming better, but he was not catching up to other children in his peer group. Nursery commented on his poor eye contact, lack of social skills and poor language development. It was then that I knew that he was on the autistic spectrum.”
Joey did receive help from Portage, “a home-visiting educational service for pre-school children with additional support needs and their families’ (National Portage Association) as well as speech and language therapy. At present Joey needs help with dressing, going to the toilet, washing and using cutlery when eating. He also has regular medication.
Katie told us that Joey struggled with walking from a very young age,
“The child-minder struggled to encourage Joey to walk along a busy road to Nursery, and I struggled to get him to walk short distances. We couldn’t understand why, but now I realize that he was scared of all the noise.”
Joey at present has a Statement of Educational Needs and attends a Specialist School, Morecambe Road in Lancaster but as yet does not have a definitive diagnosis of Autism.
“The developmental doctor believes that he has Autism, but we are just starting the long journey to get him officially diagnosed.”
We asked Katie to tell us about the difficulties that Joey has in walking and how she helped to overcome them.
One struggle is that Joey has very little sense of danger and could potentially run out into a road, run away from Katie or go off with a stranger. She also told us that she struggled for an extremely long time to get Joey out of his buggy and to walk.
“He would just sit on the floor and refuse, constantly stop and have meltdowns where he would be extremely upset and sometimes lash out. For a long time I did not understand why he did this. It has only been during the last year that I have come to realize how his sensory disorder affects him. He gets very frightened by certain noises, lights or new unfamiliar places. He feels safe in his buggy.”
Katie told us that her understanding of Autism and its related sensory issues helped her in trying to prevent meltdowns. However she added that sometimes it was not always possible to prevent a meltdown as she would not always be aware of how Joey would react.
This year, over the summer holidays Katie decided to take action in helping Joey to conquer his fear of walking while outside.
“I tried to take Joey on little walks along the canal near our house which is a very familiar route for him. I also drove into town and encouraged Joey to walk around town; town is very familiar to him. We have tried ear defenders but he refuses to wear them. I have slowly built up the amount that Joey has been expected to walk. To help to sooth him when he feels anxious, I sing his favourite songs with his help. Goodness knows what people thought of me but I don’t really care!”
With these strategies in place and the support of both the school and child-minder using the same strategies with Joey, Katie decided to take Joey for a long walk into town, without the buggy.
“It wasn’t easy, and half way I wanted to ring my husband and ask him to bring the buggy but I kept singing, praising Joey and I stopped singing when he stopped walking and it worked! He walked three quarters of a mile and around town. We then got a lift home. We used Joey’s love of music to help him.”
Katie also told us how Lily likes to help her little brother. When out shopping in the supermarket Katie is trying to teach Joey to stand near her, if he runs away Lily will go and find him and take him safely back to her.
“She is very good at calming him down when he is having a meltdown, usually by finding something for him to watch on the iPad. This helps when I am driving the car. Sometimes she gets annoyed with him and needs her own space but I think that is normal.”
Autism Daily Newscast asked Katie what advice she would give to other parents going through similar difficulties:
“Try to look at the world through your child’s eyes so that you can truly understand their difficulties. Have faith in your child and give them the support and encouragement they need. Find out what they are into and use it. For example Joey is into music. So I use music to calm him down and to encourage him to do things.”
At the moment Katie is waiting for a special needs buggy which will be needed for long family walks and visits to unfamiliar places. Walking next to busy roads is also still a challenge.
Katie ends by saying:
“However I can now see that we can teach Joey how to cope in the world around him and he won’t need his buggy forever.”