If you have been following along with our journey, you'd know life often follows a different type of normal for special needs families, but what does that look like? what extra supports need to be put in place and why?
That's a lot to unpack...so, in the easiest way possible I'll lay it all out! let me provide a breakdown of daily life in our family..
6AM- Put Keanu on the toilet as we are currently practicing toileting routines, sometimes he will pee on the toilet but also sometimes he will wet through which means changing the bedsheets & pyjamas during the night.
6:30AM - Ensuring Keanu has his morning bottle with his epilepsy medication
7:00AM-Getting Keanu changed for school, he needs support with all aspects of self-help so physically changing his clothes and his nappy.
7:15AM- Making Keanu's breakfast, this time can sometimes be a bit of a rush as his school minibus picks him up at 7:45... He loves to have the same breakfast every day, toast with butter, Vegemite and avocado. On the weekends he will sometimes add scrambled egg. Keanu actually loves eating and one of his favourite activities is eating out at cafes!
7:40AM- Quickly get Keanu's shoes on, wash his face and brush his hair.
7:45AM- "Lydia Bus" arrives. Lydia is his school bus driver and Keanu will often wait at the front door for her to arrive. They then go pick up some other friends in the neighbourhood and off they go to school!
This is all before 8AM...yep we are exhausted too..it isn't just the physicality of assisting Keanu with most tasks its also the mental dominance of ensuring everything is in place and that is he safe/comfortable/happy/ready..but of course his little smile when he sees the school bus pull up makes all the work worth it! However!! when I was pregnant I'd have to go back to sleep for another 2 hours haha
As Keanu attends a special needs school there is a heavy focus on functional communication and self-help/life/play/social skills. They follow an emended version of the New Zealand Educational Curriculum along with the Early Years Framework. They do follow a schedule each day but it is flexible depending on the needs of the child and especially during COVID times there have been disruptions to their normality...
Some of Keanu's favourite activities at school include morning circle (time to dance to The Wiggles), music time (gets to pick his favourite instruments), horse riding (loves the thrill of fast galloping), energise (time to experiment with trikes, skateboards & scooters), community outings; trips to the supermarket (tries to steal chocolate), shopping mall, local parks and walks around the block.
We are very proud of how far he has come and love receiving daily reports from his teachers that he is starting to engage & focus for longer periods of time. In particular he is beginning to enjoy Attention Autism which is an approach to aid development for extended periods of time through getting, keeping and sharing attention. This also helps Keanu pay attention within a group setting. We love how his school promotes independence as well as exposing the students to different experiences. Just the other day they had a visiting Te Reo group that performed a play, Keanu loved the songs and humorous acting!
Afternoon/Night Time Routine
3:40PM: When Keanu gets home from school he knows exactly what he wants first - his chocolate treat! He stands next to the pantry and pulls on our arm until we get the treat basket down from the top shelf. We then help him open his chocolate Freddo bar, this is another of his personal goals, independently opening wrappers, of course he really concentrates while doing this because he knows something yummy is at the other end! smart boy. I told you he loooooves to eat!
4PM: Shower time. For a lot of children on the spectrum certain activities, rituals and routines can be calming. For Keanu his shower when he gets home from school is his way to wind-down and play with his hula hoop.
He also lets Jordan brush his teeth during this time with his Mickey Mouse electric tooth brush...everything belonging to Keanu has a theme relating to his favourite characters, this entices him to cooperate and also marks it as his, if he can recognise something he knows its makes learning more fun for him. So he has a Mickey Mouse school bag, The Wiggles lunch box, Mickey Mouse headphones, Mickey Mouse bed covers & pyjamas...etc...you name it!!
4:30: Help Keanu into his pyjamas, apply eczema creams. TV time! Favourites include: Trolls, Sing, Frozen 2, The Wiggles Christmas edition, Mickey Mouse Christmas edition also haha, Peppa Pig (few specific episodes).
5PM: Dinner time, prep his food which is usually something crunchy he loves fish so either making fish bites for him or having some breaded fish goes down well! Pair it with sweet potato fries and steamed veggies or some ravioli with hidden veggies.
He likes to eat with his hands and really enjoys crushing the food in his fingers before eating it which again is for the sensory input. We have a special plate with a high edge on it to help with scooping and it also has grip on the bottom to avoid slipping.
Another of Keanu's goals is to use cutlery so we have been trying with a special fork for a few months, the fork has a thick grip to it and the mental of the utensil part is able to be manoeuvred to suit a certain angle. He is slowly progressing with this however he does not yet have enough fine motor control and strength in his hands to stab the food independently.
Although he can bring the food to his mouth using the fork once the fork is loaded, as always we celebrate the small successes! up until he was about 5 he was still being mainly fed by us and eating mushy, soft food so he has progressed an enormous amount!
6PM: Make Keanu's night time medicine and mix with soy milk. As Keanu has epilepsy these medications are vital twice a day. We dissolve the pills in warm water, syringe the liquid form of medicine and add the soy milk. He drinks this in a bottle when he goes to bed.
At this time we also make the morning medicine which basically follows the above routine with different dosages. this bottle goes in the fridge for when he wakes up.
7PM: We say "Bye Bye TV", Keanu will not look happy and sprint into his room to get his blanket, he then comes back grabs his bottle and surrenders to bed! Luckily for us all, and also perhaps a side effect of his medication, he sleeps very well. He will usually have 12-14 hours a night.
Before we go to bed: Make sure Keanu's school bag is packed for the next day, he needs to take spare clothes, bibs, a wet bag, a few nappies, wipes. Pack his lunch box for the next day, we send him in with a cooked lunch and the teachers heat it up for him in the microwave (he is a little KING!). He also has a special plate and cutlery set at school so we have continuity of eating.
This is a typical week day but a weekend would look a lot different and sometimes a bit more hectic depending on what we are doing. What I can say for sure is that as a special needs parent you ALWAYS need to be organised and have the bag packed with exactly what your child needs...this is going to make your life easier when you are out and about. I even have a list so we don't forget anything important like his medications, allergy meds etc.