Our story, our journey.....

Sometimes it's a bit hard to post, especially when you don't have something positive to post about. It's been a rough couple of weeks. I've decided to try to post something positive so here goes... Special needs siblings - the real superheroes: Here is a list of the most amazing qualities of a sibling of a child with special needs: 1. They just "get" their sibling - in a way no-one else does. They pick up on their siblings moods and know exactly how to handle it. If their sibling is sad, they know how to cheer him up. If he is angry, they know how to calm him down, or how to dodge the hits and kicks. 2. They have a wicked sense of humor. Any sibling has to have a sense of humor to survive living with a special needs brother/sister. They see the comedy in situations that may not seem funny to any "normal" human being. When your autistic child claps his hands very loudly in the restaurant and his brother joins in to spite the people givin...

The keto diet is going well. I have lost about 4kg already, although this is not my aim with the diet, it's still an added bonus. I am in light ketosis at this stage (my blood ketone level is 0.9 mmol). It took a while to get used to the carb restrictions but I am quite adapted now and I can honestly say I dont miss the carbs nearly as much as I thought I would. Also, because of the high fat intake I do not get hungry, also bonus. I'm not sure if it's all in the mind, but my thoughts feel more coordinated and clear. Hopefully this is an indication that my brain is starting to use ketones for energy. All in all I feel good and very hopeful for results towards fighting early onset alzheimers disease.

I was reminded today how challenging our lives were two years ago when we took care of our mom with alzheimers. My facebook memories for today showed a post I placed exactly two years ago. I place an excerpt from the facebook post below. I look back on the memories from that time with some sadness but also with a feeling of peace, I know we did our best for mom and I'm sure she is looking at us with pride. Facebook post from 2 years ago: Alzheimers. It's when old people forget things, right? It's when an old granny with gray hair and a walker can't remember anymore. But sometimes alzheimers is your mom who at 57 years old start to forget things, and you think no, it's normal, people start to forget as they age. And as the years pass you can't stay in denial. At 61 years old you get the dreaded diagnosis. It's early onset alzheimers disease. Alzheimers. In some cases, it's feeding your mom for 2 hours, all the while ducking the hand trying to ...

We've had a bit of a rough week, that's why I haven't posted in a while. Jacques has had some aggressive episodes the last week and we've been in survival mode. He got hold of a cd holder full of dvd's and broke most of them into pieces. He also tore up some books, he loves ripping papers into shreds. He then broke our BIG bathroom mirror while I was bathing him, he broke it with one slap🙈. His guardian angels worked overtime keeping him and myself safe. The mirror didn't fall on us, it came to land on the edge of the bath. I did however get about another thousand grey hairs in the process. Ruben and myself made a collage out of some of the pieces of material I kept after Jacques' destructive streak. I told Ruben we can make something beautiful out of the broken pieces. We had a blast embracing our inner creative muse and spent some quality time just the two of us. I took some of the pieces when Jacques first broke the dvd's and I ke...

My son had friends over for a sleep-over birthday party this past weekend. It was a lot of fun and the kids enjoyed themselves, but there were also some less than enjoyable moments. Ruben's friends are all smaller than Jacques, which is understandable as there is a three and a half year age difference. Jacques likes having the friends over, he was very excited beforehand. But, he gets over excited and then doesn't know how to regulate his emotions. Unfortunately some of the friends had to endure slaps and having things thrown at them. I felt bad for the friends, and tried to explain that Jacques didn't mean to hurt them, that he just got excited and didn't know how to express himself. Ruben came home yesterday and told me that one of the friends that came for the sleep-over told him that he doesn't want to be friends anymore. Luckily, my very resilient child wasn't upset about this and just told me about three new friends he made. I feel really proud of h...

My decision to try keto and intermittent fasting may seem extreme to some, but I have very personal reasons for trying and I will share these reasons with you guys. My greatest hope and reason for doing the keto diet is to use it as a means of preventing alzheimers disease and maybe later use it as a treatment plan for Jacques ' autism. There are also some people who use keto to treat type 1 diabetes but I will research the pros and cons thoroughly before I decide to implement keto with Jacques. My family was not lucky in the gene lottery. My mom had early onset alzheimers disease and my uncle has also been diagnosed with dementia. *"A rare form of Alzheimer’s that affects younger patients is known as early-onset. It occurs in no more than 5 percent of cases and tends to develop before the age of 60. Studies show that in most cases it does run in families. This inherited form of early-onset is known as Familial Alzheimer’s disease (FAD). FAD is caused by any one of a...

I have decided to research and experiment with the keto diet and intermittent fasting. Because of our family history of both cancer and alzheimers disease I want to try all viable options to try to minimize my risk of these diseases. Recent studies have shown some very promising results in the treatment and prevention of both cancer and alzheimer's disease. I did implement a low carb (keto adjusted) diet a few years ago for Jacques as a way to try to minimize his aggressive behavior. We could not sustain the diet for long as his blood sugar would drop dangerously low (he has type 1 diabetes). If there are substantial benefits for me, I will try the diet with Jacques again as all the info I have gathered so far show that there can be major benefits in treating autism with the keto diet. I have not tried intermittent fasting before so this is completely new to me, but I look forward to the challenge. I will update the blog with my progress as this will (hopefully) ultimately...

I have pondered starting a bucket list for Jacques for a while, and finally decided to commit to the idea. It may seem strange to make a bucket list for a 14 year old, but I am under no illusions that Jacques' life is very fragile. I want to make sure he gets to experience everything he would want to while God lends him to us. Here goes: 1. Meet our Chief Apostle - the leader of our church. Although he did briefly get a wave in person once, I know he would love to get a hug from his hero. 2. Meet Johan Stemmet - previous presenter of Noot vir Noot. This is his idol - he loves oom Johan. Those are the 2 big ones, the improbable dreams that I am sure Jacques has. The next few items he can at least get a lot easier and a lot more of. 3. Movies - take him to as many movies possible - he loves going out to the movies, uhmm, mostly for the popcorn😂. 4. Spur - I have mentioned his love for Spur before. It is not really the food that attracts him, it's the happy birt...

I have a theory that parenting a special needs child makes a parent age quicker. I do have some evidence to support this theory. Exhibit A - I have a lot more grey hair than my mom had at my age. According to our genetics, I should have a beautiful, grey free head of hair until at least the age of 45 years - I am only 37 years old now and already have 10% silver coverage adorning my head. Exhibit B - I have night sweats. Horrible, yucky, wake up with my hair wet, night sweats. The low or changing levels of estrogen in particular are the cause of night sweats. Perimenopause usually happens between ages 40 and 50. Thank you google, again I am 37!! Exhibit C - I am always tired. If I could I would take a nap every chance I could get. But, with the sleep police (Jacques) always in the vicinity that would be hazardous to my health. He slaps his victims awake without a flinch and usually finds it hilarious as well. Exhibit D - joints I never knew I had are making creaking noises so b...

We have had really positive encounters with strangers on this crazy journey with Jacques. But, we have had less than pleasant experiences as well. I have to be really careful with this post, because I want to highlight the lessons we have learned and these are all positive, although the lessons have come from some really dark experiences. The first encounter I want to share happened a few years ago, just after one of Jacques' hernia repairs. We were having lunch at his favorite restaurant, and he was clapping his hands loudly (as he always does) out of excitement, he had just spent the week in hospital, so he was really happy to be in one of his favorite places. I overheard an elderly couple not far from our table complaining (loudly) about the ruckus Jacques was making. Unfortunately, I also heard the one person say, and I'm paraphrasing: "couldn't they leave him at home". Ouch. This really stung. I had to fight back the tears for my youngest son, who always ...

My mom's birthday is tomorrow. My mom passed away in March 2018. She had alzheimers, she was only 64 years old when she passed. She was diagnosed with early onset Alzheimers disease, the first signs began when she was 57 years old. Most people, when they hear alzheimers, they think about an old frail granny or grandpa in their 80's. My mom was not even retirement age when she passed. I know this blog is primarily about our journey with Jacques, but it is also about special needs. In the last year or so of my moms life she had greater special needs than Jacques. We had to feed her, take her to the toilet, bathe her, we had to do everything for her. It has been a year and a half since her passing, but there are still so many emotions that linger. The strongest emotion now is definitely love and longing. I can now start to remember her prior to diagnosis. Just after her passing I had trouble remembering her as my vibrant, loving, selfless mom - my hero - the woman who taugh...

Tomorrow is my superheros birthday. Ruben is turning 11 years old. Where has the time gone?! This post is about Jacques' little brother, Ruben, who is his best friend and protector. We had a blast making his class cupcakes. Ruben is such a unique, quirky kid, and I love that about him. He once again showed me what a funny and happy kid he is. My youngest son was truly born to stand out, not to fit in, and to shine his beautiful, bright light for the whole world to see. Our cupcake making has become a tradition for us, and I love this special "us time" every year. Here follow Rubens step by step guide for baking the best cupcakes in the universe: Pre-heat the oven...  The ingredients...  Add the sugar to the butter...  Mix with a smile...  Break the eggs...  Huh???  Add eggs with evil grin...  Mix again...  More mixing...  Thumbs up...  Even more mixing...  Place t...

The confirmants in our church is away on a youth camp this weekend. Jacques is confirmant age, and for obvious reasons could not join them. My mommy heart is a bit sore, knowing his soul is sooo ready to be confirmed, but he cannot take part in the events leading up to this big moment in any young childs life. The youth will be "confirmed" next year February. We have spoken with our Shepherd (our congregation leader) and we have decided to not subject Jacques to the saying of the confirmants vow. Jacques will not be able to take his vows, and we will stay responsible for his soul until his death, meaning we need to take him to God's house for the rest of his life, he cannot do it himself. This may sound like a big responsibility on our shoulders but not really. We will never have to force Jacques to attend church, if anything he will force us, even if we may not feel like it. Jacques' soul is so much wiser and faithful than mine can ever be. He is an inspiratio...

A friend of mine, with a child with disabilities once told me that her biggest wish is that her child will die before she does. This took me by surprise to say the least, but then she explained to me the following. She does not have a support network. She is solely responsible for her childs well being. If she should pass away before him she has no-one to take care of him. Isn't this terrible! I know of a lot of special needs families in the same circumstance. If something should happen to mom or dad, what will happen to their disabled child? In many instances the disability is so severe that the extended family members just doesn't feel equipped to take care of the disabled individual. Unfortunately, as our disabled kids grow older, they become less "acceptable" for the general population. Things they could get away with in their earlier years are not acceptable as they grow up. But what people don't realize is that in most cases the disabled person did not...

My father-in-law calls our home fortknox. With good reason. It is not to keep something out but to keep something (and someone) in. Jacques has no concept of danger, none. Therefor we have to keep the doors that lead to the outside locked at all times. But not only that, we need to keep the keys out of his reach as well, because he can unlock doors and gates. The problem with this is that he can reach further than I can (the kid is 10cm taller than I am). So, either I keep the keys on me at all times (there is a lot of keys - as you will learn in a bit), or I find creative places to hide the keys. Jacques is an expert at hide and go seek - keys style. Now, like mentioned above, unfortunately it is not only the keys to the doors that lead outside we need to hide. All the rooms in the front part of our house has keys, and these rooms stay locked at all times, all rooms except for the "safe room" (a little more on that room later). We also have a security gate that keep pe...