My rule for this website is to always share positive can-do stories but life is far from smooth sailing. Our positive attitude and family support certainly helps but over the last 21 years I’ve lost the plot on more than one occasion. When I look back through photos it’s a reminder of the difficult phases but it also reinforces that we survived them. I’m well aware that there are many people who have far more difficult times than these but in honour of BJ’s 21st birthday I thought I’d share some of the, let’s say, more interesting times we’ve had.
BJ needed glasses from just before his first birthday. He wasn’t keen on wearing them and because of that I became firm friends with the optometrist. He’d fling his glasses off without me knowing and next thing I’d have rolled over them in the pram, twisting the frame. In his standing frame he’d watch a video and pull the glasses down and have a little nibble on the nose pad and on and on it went. It was a happy day when an operation meant that he no longer needed glasses but I kept them as a reminder.
Patching continued for many years. One day I came back from the bathroom (I only took 5 minutes for myself) and the patch was gone. It was nowhere to be found. I phoned the doctor’s surgery to express my alarm at the fact that he must have eaten it. The receptionist laughed and said to keep an eye out in the coming days in his nappies. Sure enough the patch returned. Towards the end of his patching I had to walk around the backyard for 40 minutes each day distracting him to keep it on.
3. Toilet training
Oh the toilet training was quite the process. We tried an alarm system. The minute the alarm sounded it was action stations. We were all stressed out by the process of running across the room and getting him on to a potty. Next was timing which meant that we lived by the clock and close to the toilet at all times. It was tiresome but success sometimes requires massive input.
Sleep has been an issue for what seems like forever. At 5 months of age we checked into Triscillian for a week’s sleep training. In a rare occurrence BJ failed the first week and was asked to come back for a second week. We’ve tried everything with sleep. I kept a sleep diary and noted everything from what he ate, where he was during the day and anything else that might give us a clue. I tried everything including washing his sheets every day because he had a good night’s sleep one night and it coincided with me washing the sheets. That didn’t last long, it was exhausting and seemed to be a one off.
Oh the forms! They seem endless and it seems every time I return from the doctors having had one filled out that the next one arrives needing filling out. The upside is that I’ve become fast at filling out forms. I think it should be an Olympic sport for families with additional needs. It would be a competitive field.
6. People saying “No” or “it’s never been done like that before”
I’m not fond of the word “No” and I hate it even more when the response is that things haven’t been done like that before. Shouldn’t we all want to change things, try new ideas and evolve? Imagine if Neil Armstrong had said “Oh, that’s never been done before.” I like the challenge of convincing people to say “Yes” or “We’ll try”.
7. Looking at preschools/schools
Searching for a preschool was soul destroying but it made me realise that finding somewhere where BJ is appreciated is key. There is no point in forcing people, they should value what he will bring to the setting. When we found the right preschool we had a great experience. The staff, kids and parents were all lovely. You can read about my search here.
8. Eye appointments
Yep, back to the eyes again. I became very close to our Orthoptist because she admired BJ and despite him taking four times as long to examine as any other patient, she liked his determination and could see it would stand him in good stead when he put it towards good rather than evil. It also made me think outside the box. The Orthoptist had a machine which went back and forth with different size dots on it. The idea was for BJ to track the dot but BJ wouldn’t look at the dot on the machine. Given that he loves his Grandad so much I printed out pictures of him the size of the different dots required for the eye test. All very complicated but it worked. It also eased my tension because Grandad going back and forwards was pretty funny.
9. Medicated the wrong one
This goes down in history as one of my worst parenting moments. We were sleep deprived something dreadful, BJ was sick and our dog was also sick. BJ and the dog were sitting side-by-side and somehow I popped the dog’s tablet in BJ’s mouth. The minute it happened I realised but it was gone. I was horrified beyond belief. I scraped BJ’s mouth with my finger and there was nothing. I didn’t know who to ring first, poison information, the doctor or the vet! It was horrific. I ended up ringing all three and all assured me that no harm would come as it was also a human medication. A big lesson in not dealing with medication when over-tired. I always get my Mum or Hubby to double check if I’m sleep deprived now. Not that we have a dog anymore but you never know what I’ll do!
10. Flying to LA
Keeping an on-the-go BJ happy on a 15-hour flight to LA is definitely a struggle. Despite all my best entertaining he gets exhausted and can’t get comfortable unless he can lie down. He loves his trips when he gets there but flying definitely makes me nearly lose the plot. You can read about our flight in this blog.
11. Hubby away during sickness
Hubby was away on a work trip when BJ and I had a nightmare gastro bug. I remember one day I walked BJ to the toilet 14 times. I was exhausted and Hubby phoned from his trip. It was to tropical north Queensland and he happily told me how he was walking along the beachfront in Palm Cove. I think this was an occasion I did lose the plot. He would have been wiser to paint less of a tropical picture.
12. Juggling the needs of the two kids
School holidays used to be a struggle. AJ being a home girl and BJ wanting to be out and about every day from early was difficult. The long summer vacation was really tough with such a restless boy.
13. Bad teacher
A year with a bad teacher is the pits. We had a couple of these experiences and all I can say is that it made me appreciate the good ones even more.
People often assume that a person who is non-verbal doesn’t understand. This has resulted in some dreadful things being said in front of BJ. Assumptions all round have been the cause of much frustration but I usually maintain a polite veneer and explode to Hubby later.
15. Hearing Aids
BJ was one step away from getting hearing aids. My gut told me he had no problem with his hearing but he wouldn’t respond to the standard testing. As a last ditch effort I asked the technician if I could go into the booth instead of the puppet to see if he’d “perform” for me. That did the trick and BJ didn’t need hearing aids and has proved all his life he has keen hearing indeed. I can never get away with anything!
16. Ready but not ready
BJ’s physio declared he was ready to sit physically but for some reason he still wasn’t doing it. In part he was fighting the way she wanted him to do it. Putting his hands on the ground to stabilise meant there was nothing he could do. I guess he wondered what was the point to that. In the end I put a plastic container of toys in front of him and he had a lightbulb moment. Hearing he was ready but not doing it was frustrating but this was a lesson in how therapy was going to roll forever after. He wanted to know what was in it for him.
17. Not getting it together
Sometimes I’ve been sleep deprived, dealing with BJ who is sick and I’ve totally messed up something for AJ ie a special day at school. I’m sure it happens to many but the guilt is so bad and her acceptance of it just makes the guilt even worse. But we are all human and I do know I’m doing my best.
18. Booking a trip
One of the reasons I’m so keen to share my good finds with our readers is because at times I’m pulling my hair out trying to find suitable accommodation, in our budget and at the desired location. Last year when booking a trip to Cairns I’d made enquiry after enquiry and thought I’d finally found the winner. The girl confirmed yes the property was accessible. Then she said, “There are just a few stairs up to the elevator.” It was at that point I lost the plot. I recovered, we found a great place to stay and had a wonderful holiday.
19. Some birthdays
A few birthdays brought me unstuck in the lead up when I realised another year had slipped by and BJ hadn’t reached some of the milestones. Watching him enjoy his birthday soon snapped me out of it.
20. Trying to do it all
It took me a while to realise that each therapist was going to give me “homework” and it was okay to not always hand it in on time. I tried my hardest to do everything but I soon worked out I wasn’t some superhuman therapy parent. Trying to do it all was making us all lose the plot.
21. Computer crashing
And tonight, as I was nearing the completion of this blog, my computer crashed meaning I lost quite a bit of the post despite saving as I went. It looked terminal for the laptop, no life whatsoever and I totally lost the plot. Hubby saved the day fortunately and even I can laugh at the irony of the timing.
Being a parent and caring for someone with additional needs is definitely a rollercoaster of emotions and despite being positive it’s only natural to lose the plot sometimes. I know I’m lucky and that these are small things in the scheme of life but at the time they were a big deal. Many lessons were learnt from these experiences and I guess it has shaped how we deal with any new situations.
What makes you lose the plot or are you cool, calm and collected?
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You are a champion, Julie. I am amazed at what you have achieved.
Thanks Harry. It is always nice to have support.
What an amazing mum you are! Happy Birthday BJ and best wishes for such a milestone!
A very human Mum that’s for sure.
It will certainly be a good celebration this year for 21!
Seana Smith says
Hello there, oh dear I can relate to many of these… eye patching! Had to do it with my daughter when she was little – murder. I found looking for kind and accepting preschools and schools the most stressful and emotionally draining times of all and my most major plot loss was when a preschool gave us a very hard time… they knew best, evidently.. we left!
I love the honesty of this post, it’s reassuring to know that we all lose the plot now and again… actually fairly often!
The eye patching is brutal, as was the preschool search. In the end I figured only those that really wanted my boy could have him.
Losing the plot is part of the process it would appear and it’s good to know that this post has resonated with many.
What a relief .Yes we are human and not super human. Losing the plot was nearly a daily occurance. Pushing the boundaries and believing in your child is our motto for life. It worked as my son Shogo has almost completed his masters degree in Government policies and procedures. Schools were no help telling us they had nothing to offer him and for him to leave at sixteen before consulting his parents. So we did and Tafe was where he blossomed into a academic. Love running into his old teachers now . They were wrong. Keep up your good work and never take no for an answer push every boundary and soar above
I’ve lost my temper once or twice so far as a mom of twins. One of them has special needs. I’m glad that I did not pay too much attention to the MFM doctor who told me that my boy would be a paralysed vegetable (most unhelpful thing ever) when I was pregnant with the twins. My son is not a lifeless chicken. He does have a wheelchair but he seems smart and a mischief machine like his twin sister. His older sister has her work cut out whenever she babysits the pair. His orthopedic doctor and urologist are by far the most accurate and helpful specialists I’ve met so far at Children’s. They love our little guy almost as much as we do. The physical medicine lady was not proactive enough so I switched specialists.