The ‘Ups and Downs’ of a family living with Autism

The ‘Ups and Downs’ of a family living with Autism

With it being World Autism Awareness Week, we asked some parents to give us a ‘warts and all’ account of the ups and downs of a family life living
with Autism.

“Hi, my name is Catherine. My son, Michael is 20 and has Downs Syndrome and Autism. Michael has a younger brother called Jack who is 18 and a sister, Leah who is 14. Michael was diagnosed with autism when he was 9 years old. I’d suspected it for a while, but with his severe learning disability, it was difficult to get a diagnosis until that time.

I’ve been a single parent family since September 2000, had a brief relationship which resulted in the birth of my beautiful daughter in 2004 but then have raised my three children myself with, may I say, enormous support from my parents who are now in their 70s but still continue to support us in so many ways as a family. We are all very close. It’s difficult to try and condense into limited words the ups and downs of living with Michael and the effect it has had on our lives. Michael is such a character and has brought such humour to our lives! He is the funniest person I know and has the ability to make me laugh so much! Yet can reduce me to tears and feelings of despair on a regular basis.

To say it’s been a rollercoaster ride over the years is quite the understatement. Michael likes things to go his way. He has alot of difficulties communicating with people. His speech is limited and he only speaks in certain settings e.g. at home with familiar family members.
He doesn’t speak at college, 
or in the respite centre, where he goes for 7 staggered nights a month.
He went through a very difficult time which began when he was very small, with such temper tantrums, which continued until very recently. He is only now beginning to develop skills to control his anger and emotions although requires lots of reassurance and is still very prone to outbursts when things don’t go to plan.

He doesn’t like social outings, or family parties. I’ve lost count of the amount of birthday parties where Michael’s behaviour resulted in me having to leave early with Jack and Leah. He can be very destructive when having “meltdowns” and has destroyed lots of gadgets over the years. So many times he would snap his Nintendo DS in two! Thank the Lord for Argos! And their product insurance! Ha Ha! But he would also destroy things that Leah and Jack had made or won, certificates from school. Things that were precious to them. That was very upsetting over the years. He even ripped Leah’s school shoes to pieces one night and went through a phase of ripping clothing.

As a family we’ve had to adapt to live our lives a certain way in order to achieve some sort of stability and peace within our home. Our lives really have revolved around Michael in alot of ways. I guess when we were finally allocated a wonderful social worker, Virginia, things did start to improve. She helped us to get respite for Michael. This finally enabled me to spend some real quality time with Leah and Jack. We were able to go out on an evening after school, even if it was just to the cinema or the Metrocentre and on weekends too. I felt incredibly guilty as Michael didn’t settle into respite quickly. As a mother, you feel very torn between feeling like you’re letting one child down in order to please your other children. But despite my feelings of guilt, I still say to this day that respite was a Godsend to me and the kids. And none of us would have coped without it.

I also had regular input from Helen Geldard who is a specialist in autism. She helped me put visual timetables in place which helped Michael to understand what was happening each day and made a massive positive difference to his behaviours. She offered me support, a chance to talk about any difficulties and I cherished her input over the years. If I had any issues with Michael’s behaviours. I could always rely on her help and support. When I ask Leah and Jack how they feel about Michael, the first thing they say is how funny he is, and despite all the difficult times they’ve endured over the years, they just seem to have accepted him and I have to say (i know I’m biased) but they’ve really grown into such lovely, kind natured, understanding people. I couldn’t be more proud of all my children. And everything that Michael goes on to achieve is extra special.

Since he started his placement at Learning for Life college in September 2017, Michael has made such massive progress in so many areas! Despite a rocky start, which we all anticipated, it was a massive transition from Villa real school where he’d been attending for 17 years. He is settling in incredibly well. He’s doing some wonderful work in his education class, his handwriting is improving massively. He’s forming really good relationships with staff and fellow students and I no longer have to coax him out of the house on a morning to go to college. He’s been moved into a different class in the past two weeks which means he’ll be going out into the community more and I honestly cannot praise or speak more highly of the staff at Learning for Life. They are so skilled and I feel very well informed and involved in Michael’s progress there. 

I feel like I could write a thousand pages on Michael and our lives. There have been so many wonderful times over the years, lots of difficult and challenging times too. But with the support, love and care of my parents and other family members and some wonderful supportive friends, I have to say that Michael has enriched our lives and taught us so much about what is important in life. He is a very cool and funny and charming young man. And I’m so very proud to say I’m his mam.”