On the 8th day He made Autism Parents

Genesis 1 1:31

In 6 God-Days, He made:

Day 1     –              Light and Dark

Day 2     –              Water Above (Clouds and rain/ Atmosphere) and Water Below (water on earth)

Day 3     –              Sea and Land and all plants and trees on the land, fruit bearing and seed bearing plants.

Day 4     –              Seasons, days, years, light in the sky for day – sun – and night – moon and stars.

Day 5     –              Sea and all the sea creatures, Sky and all the winged birds and told them to multiply and fill the sea and the sky.

Day 6     –              Land animals and told them to multiply and finally Man and Woman and told them to multiply and “supervise” all His creations and take care of it.

Day 7     –              He Rested.

He had to rest.  He had to take time off to think carefully before he could create His best creation ever:  Autism Parents.  He had to really get it right because we are a special breed of people.

Autism Parents did NOT get on their knees one day and pray:  “Please Lord, I am so happy with what I have at this moment that it makes me feel like I need a challenge.”  Or, “Dear Lord, I am really bored with my life, I need a challenge.”  Believe me, every day with a child or adult with Autism is a challenge.

I have worked in this field for 15 years now, ever since my son was diagnosed at 4 years of age.  As parents it was possibly the worst thing to deal with, the diagnostic process, the looking for answers, the trying to find other parents out there and finding out that although our children all have Autism, my child is not at all like yours and your challenges and struggles are not what I am going through at all.  We researched, we asked questions, we read every book we could – not enough in the library at all, but we bought and borrowed.  But I soon discovered that I could read and learn as much as I can, but little of it applied to my son.  He is a unique piece of Human Art.  He is so sweet now but when he was 4 to 5 years old, boy oh boy, he was not a nice child at all to be around.  He tested my patience; he got on my very, very last nerve.  I just decided I will never give up on him.  I would learn and grow with him as I needed to.  But I must tell you that every parent I have ever encountered going through the same process as us, find it very hard to cope with.  The long diagnostic process, the money spent on therapy and time off work to take your child for all these assessments and therapy sessions.  Driving a car with a child who simply refuse to sit in the car seat, strapped in.  The screaming, tantrums, melt downs and flailing little bodies.  The stubborn children who, when their minds are made up, it stays made up.  The trying to puzzle what the ‘communication’ from your child means.  WHAT DO YOU WANT????????  UUUUUUuuuurrrrrrrrrggggggggggggg!!  I lived in a state of fear and nerves for years.  And it became 10 fold more intense when he got sick.  Oh Lordy, I went into panic mode, I still do.

The other big problem is being sleep deprived.  My son did not want to sleep, he never seemed to get tired.  The doctor would not give him something to help him (and us) sleep at night.  Some days I drove to work and could not remember how I got there………………..

But my point is, we are not “special parent” like I so often hear from people.  The phrase “God only give special children to very special parents” pisses me off totally.  I am not a special parent, I am a dead normal mommy who had to come to terms with a very complex disorder and had to sink or swim.  I take pride in the fact that I did not sink, I had two years of getting to terms with it and waking up in the morning and thinking, jeeeeeze that was a terrible nightmare just to realise it is real!

From parents I have known in my 15 year journey with Autism Spectrum Disorder I have learned that we need to stand together, we need to rely on each other and ask for help when we need it.  It is very difficult to do because for some reason we want to be Super Parents and do it all ourselves, but we get burned out in the process.  We cannot let the “ag shame syndrome” get anywhere near us or our children.  We need to raise them as normal children and discipline them when they are naughty and love and respect them when they don’t understand the world around them.

We need to grow a thick skin and a tough heart to deal with our children and the (sarcastically) “interested” people.  We deal with comments and stares because we have children who look ‘normal’ but behave differently.  We suffer from depression and anxiety because our children need to be cared for even when we are not around and we trust no one to do it as well as we can.  We live with special education, medication (changes), therapy, homework.  We live with a government department for every stage of our child’s development and education and every one of them have their own regulations.  SASSA grant or no SASSA grant, SARS claims, doctor’s reports, deciphering what it all means and how it applies to MY child.  What is allowed, what decisions I can make for my child. What must I make my child do by himself or what I can do for him without being seen as a controlling, interfering parent.  Autism as a disorder is a very interesting but difficult thing to get to grips with, we need to deal with inflexible children, routines, rituals, stimming, sensory over or under stimulations, non-verbal children with their own way of communicating with us that we feel only we can ‘translate’ and understand, their own unique special interest, food preferences that lasts for months or years and can change overnight and with no communication skills to tell you what they need now or why they changed, all of a sudden your child who ate rice krispies for 7 years now only will eat pink yogurt from sun up to sun down.  And pink flavoured water from one bottle does not smell the same as another brand.  His food ‘yes’ list is getting shorter and the food ‘Hell NO’ list is getting longer.

I am not a single parent with one child only.  I have a husband and a daughter, I have other family members living with us and coming and going all day long.  100% of my time and energy cannot go only into my boy, I have to be a wife, mother, aunt, daughter in law and friend to all the other people in my life too.  I have to often remind other parents of the fact that although we have a very important job to do to be the major care giver to our children with Autism, we also have to pay special attention to our other family members, and not neglect our spouses.  We need to also make a very special effort to be a mom to our other kids, love them equally.  They also deserve our time, effort and love, our dedication and all things they are entitled to.

As parents we are never allowed to have a bad day, we need to remain happy and positive, full of energy and keep smiling.  We may never get sick.  We can never take a day off.  We are different to teachers and therapists and even the doctor who are in control of the diagnoses and medication. They see our kids for an appointment or part of the day.  Our lives revolve around 24/7 care and love for our children and young adults with Autism.  We love them regardless. Autism is not an excuse, it may be the reason………………. We will become the parents who others frown upon and silently fear.  We are those creations that God had to sit and think about for a whole God-Day, the 7th day.

I have met all kinds of Autism Parents and never met a BAD parent, never a parent who would not do absolutely anything for their children.  The Autism parent will fight to the death to protect their child.  We will take you and your opinion DOWN!  We are the Grisly Momma and Poppa Bears of the world.  We put our big feet in our child’s business at home, school, therapy and everywhere.

We will never stop learning and helping our kids.  We are tenacious; we made ourselves strong in mind and soul.  We have learned what we are capable of to help our kids.  Every now and again, we take a bit of time off to recuperate and get our shit together, but we bounce back fast enough.  We are God’s special creations.

We are the 8th Day Creations, the Autism Parents!

Parkinson’s is a pain

Living in a household of “special needs” is nothing new to us, my son has Autism.  We have a cat that we are all convinced is brainless, we had a three legged hamster – a topic for another day – and then we have parents who have Parkinson’s Disease.  Well we only have mom now, my father in law passed away two years ago after a long battle with Parkinson’s.

Many years ago, dad started having slight hand tremors and it was put down to smoking and having his wine at night, a good few glasses, hehehe.  But he once had a severe muscle cramp in his back, he thought it was a pinched nerve, he made an appointment with a chiropractor and at this appointment, before the torture session, the chiropractor walked out of the waiting room with dad following behind him to the therapy room.  The guy stopped, turned around and asked dad if he knew that he might have Parkinson’s because of the way he walked…… dragging the one foot a bit more than the other on the wooden floor and the slight hand tremors.  This was the start of a very long journey with Parkinson’s Disease, hospital visits, medication and dementia, the horrible, horrible “essence of a person thief”.  I will never wish Parkinson’s on even my worst enemy.  We battled with dad’s disease for more than 20 years. Until one day, we could just not cope anymore and dad could not tolerate the young lady we hired to help us.

In the beginning it was not bad at all.  Dad could still do what he did before without too much trouble, the only thing that got in the way was the hand tremors and the shuffling of his feet that drove mom mad.  She would constantly tell him: “Doll, pick up your feet when you walk.”  How could she know that it was only the start.

The definition of Parkinson’s is that it is a neurodegenerative disorder which leads to progressive deterioration of motor-function due to loss of dopamine-producing brain cells.  The cause of Parkinson’s Disease is unknown but researchers speculate that both genetic  and environmental factors are involved (Similar to Autism, I know of studies to see if there is a link between Parkinson’s and Autism, maybe we will have some answers soon) , some genes have been linked to the disease.

Primary symptomes include:

Stiffness, tremors, slowness, impaired balance and shuffling gait later in the disease, other symptoms include anxiety, depression and dementia.  (www.medicinenet.com 03/09/2018)

The symptoms of Parkinson’s gradually become worse over time.  Almost unnoticeable.  It may take years for the first real daily life problem to appear.  Freezing when walking, cannot drink from a full glass or cup without spilling, lifting up arms to get dressed or wash hair in the shower, holding something in the hand while walking, eating without messing, brushing teeth and losing balance and falling often.

The muscles in the body become stiff and the movements become slow.  Processing and thinking processes slow down and the person becomes confused.  Short term and long term memory is affected.

The doctor will prescribe medication to assist with the lack of dopamine manufactured by the brain cells, the medication must be carefully monitored and altered to the level that the patient needs for near normal functioning.  But to get the dosage of medicine right can be a bit tricky! Too much can make the body, specially the legs start moving in a snakelike manner – dyskinesia, too little and the body literally freezes.   Then they have the periods of before they take medication until the medication starts working, almost like a on/off period.  Take the medication too early or too late and it may interfere with the functioning of the whole body, sleep patterns, free movements, etc. Then just when you think its all good and settled, something new crops up.

As dad’s condition got worse, we discovered that he had the added little thing called dementia.  The first time we noticed that something was not quite right was a Sunday afternoon after mom and dad came back from our holiday house in Hamburg, a little rural coastal town situated between East London and Port Alfred.  On this particular Sunday, dad was very excited and told us a fantastical story about tiny people living in the hedge around the house, they had an airplane made from the leaves of the hedge, they lived in little houses inside the hedge and they even had a lion with a mane made from the leaves.  We asked him is he was serious or just pulling our legs, but he was really serious.  We laughed for days afterwards about these little people and their lion.  Little did we know that this was the start of dementia and it is a really scary beast that robs people of who they are and how they see the world around them.  It caused a great amount of anxiety and irrational fear.  In the beginning, we never knew if dad was being serious or joking.

It soon became clear that with dementia, dad’s aggression levels also rose and it became really bad at one point.  We had to watch him closely.  He asked once for lock inserts, it was to lock their bedroom door at night – according to him, mom went dancing every night with a boyfriend, yet she was sleeping next to him in the bed.  He would bring rocks, bricks and sticks into the house and hide them under his bed, to hurt mom with if she dares go out. We had to regularly smuggle his “weapons” out of the room and hide them away.  He would find their collection of walking sticks and carry one around with him everywhere.  Mom became too frightened to sleep at night.  Later when the aggression  became less, other things would take its place.  We had to constantly be vigilant.  Dad would fall easily and got hurt often.  We still have the Dad First Aid box in the house with all the bandages and ointments and plasters.  (I guess one of these days it will be the Mom First Aid box.)

Dementia would lead to paranoia.  He would not take his medication because he thought we were poisoning him and stealing his money. Mom was never allowed to leave the house without him, he had to go wherever she went.

It is really difficult to be a caregiver to a person with Parkinson’s.  The worse the disease become, the more physically and emotionally demanding the care become.  The person with Parkinson’s lose mobility, so dressing, bathing and feeding becomes a struggle.  We discovered that the medicines made dad have very vivid dreams, he would literally jump out of bed in the middle of the night. (Mom would have to struggle with dad to get him on the bed again, she would come and ask one of us to help her when she could not do it by herself anymore.)  The care giver needs to look after themselves very well to avoid burnout.  In mom’s case, it was very difficult, she has Parkinson’s as well, she cared for herself and dad at the same time.

There was also a lighter side to dad’s illness, we had lots to giggle about.  Dad got up to a lot of mischief, he took things and put it in the chest freezer, keys, pens, small things that went missing in the house and would turn up after a long search in the freezer.  He saw and heard things that we didn’t and some of it was pretty funny.  He loved to walk outside around the house, go out the back door, around the house and in through the front door.  One day he stood in the doorway, looked around the house and commented that the guys  really worked fast, they changed the decor in the train carriage so fast.  From that day, we lived in a train.  “The guys” changed the decor all the time depending through which door dad chose to come into the house.  He had conversations with a little girl with square legs who lived under the our dining room table….. table…..square legs, hahahaha.  He also loved to leave sweets, biscuits (we found these later, soggy and covered in ants) and money all over the house.  He saw and heard other people in our house, mostly small children and Americans!  I can only think it was the TV programs my son loves to watch over and over again.  Dad said he left the money for the Americans to please go home and the sweets and biscuits because we apparently did not feed the children. He would also get annoyed with mom and me because he heard a baby crying and we did not give the baby his bottle.  He would walk to our neighbor and insist that they call the police about the vagrant living at the bottom of our garden shooting the puppies.  Oh and don’t get me started about the bunnies living under the kitchen floor making holes with their jack hammers………………………………………………………

Dad loved to nibble.  He loved toast, sausages, pickles, cheese, CHOCOLATE,  sweets, biscuits, ice cream, mac ‘n cheese, salty cracks, etc.  In short, he loved food.  If he was having a bad day, when he was getting agitated and upset, I made him something to eat.  He loved fruit, but could not peel it, so I would peel and cut up fruit for him.  On really bad days, ice cream would fix things.  Toasted cheese sandwiches was a favorite.  Mom used to sit in front of him on a little stool and feed him when he could not do it himself.  I can still “hear” him behind me in the kitchen when I make a sandwich some days.  I can also hear the fridge door open some days and expect to see dad standing there just looooooooooooking at the contents.

Other than falling and getting bloodied and hurt often, he gave us one very good scare when he had a “freezing” incident which caused a car accident in the middle of the intersection at the top end of our road.  The car was written off, dad was never allowed to drive again and from then on-wards we chauffeured him everywhere he wanted to go.  He really loved to go for drives all over the place just to see the sea.

Moving dad to the frail care center was a very difficult decision.  We looked at a few places, discussed the pro’s and con’s and finally made a decision about the place best suited to dad’s needs.  We did not do this just because we wanted to, we simply could not care for him at home anymore and it turned out to be for the best in some way.  I said goodbye to dad on the Wednesday morning he went into the frail care center.  I had to go to work in King Williams Town, mom and my hubby went with him.  Mom was asked to give dad a week or two before she visited him again to give him time to settle into the center.  But the next afternoon my husband got a phone call from the center to tell him dad passed away peacefully during his afternoon nap.  He was a good husband (mom and dad was married for 51 years), he was always a busy man, an entrepreneur, a business man, a friend and best dad to his kids but his time to rest also finally came.

Now we need to look after mom with the same care, love and respect we always showed dad.  It is not easy to see mom going down the same path as dad.  Mom does not have dementia, her memory is not as good as it used to be and her mobility is affected a lot now.  She also shuffles her feet now and dad is not here to tell her “Doll, pick up your feet when you walk” or “stand up straight” when her back starts to bend one day.  We love her and she will stay with us until we need to make another painful decision one day.

Parkinson’s Disease may be part of the Bruce-Alexander genes, we simply do not know who or if it will pop up again but we watch the B-A’ for the shakes!  It just seems that with hectic stress, they ALL shake a little.

Blessings!

Whining about DEATH…………………………………………

 

Death chooses the worst times!  Those times when you only have two pork chops and half a bag of rice left to feed your family but must now cater for more hungry mouths.  The time when you least expect it.  It takes us by surprise, shuts down the ability to function and leaves us reeling.  But that’s just how it goes.  We are never fully ready to handle it or accept the loss.

This past week, I had to face the sad reality of a loved one passing.  I flew to my sister as soon as I could because she needed me.  I realized immediately that although I went to comfort and support and assist her with the awful job of preparing for her husband’s funeral, the children needed someone to comfort them just as much.  In the event of a close family member dying, we almost shut down with disbelief, grief and feelings that we cannot immediately describe.  But the numb feeling is very real. It robs us of clear thought and makes it difficult to think logically and plan.

She had to deal with hundreds of phone calls, explaining the painful circumstances of the passing of her husband to everyone, because they all also loved and respected him.  But it rips the scab off a very painful sore every time.  They all offer their condolences but one feel as if its just not enough, it does not bring the person back, but she understood that, nothing does, and it really makes it better for them to have spoken to her and to be able to express their sadness.

Some of these phone calls can also annoy very much.  As my sister also said, for every 20 phone calls received from friends and family to pay their respects to her husband and the father of her children – and adopted children – and offer their assistance with “anything I can do for you, please just shout”, only one will actually come through with supper for six, or the money for data and airtime for her cell phone to make the endless arrangements needed for the funeral.

Then there are those exceptional people who really go beyond what you ever expect, the ones who without being asked, pay for things because they want to, not because they are asked to do it.  The best friends, employers, church and family who give without expecting anything in return.  I cannot thank them enough for making life easier for my sister.

This week was also a week of revelations, of a family who pulled together to help with emotional support, hard work and even laughter.  We, my mom, sister in law and myself, were doing our best to be supportive, but also to be respectful of the family’s feelings, we tried to be there for them without taking over and being in the way too much. Its a fine balance and it is not easy.

Death and funeral preparations also does not end with the emotional stuff, the paperwork and legal stuff can also be daunting.  Stuff = the rest.

It brought back the long, tiring battle to wrap up my father-in-law’s estate and the endless red tape and paperwork that is needed to conclude someone’s life.  First it is the money problem of Frail Care – dad had Parkinson’s, funeral preparations, time, phone calls that never seem to end but always ended in tears, family responsibilities and care, church service and cremation.  Then came the bank, final will and testament, business bank account wrap-up, vehicles to be put into mom-in-law’s name, emails to sort out insurance, and the list goes on and on.  And we were assured that his affairs were simple compared to most people’s to conclude, but for us, it was a long, tedious wait and difficult job to get it all done.

A few things I have learned from death and arranging two funerals and tying up loose ends, other than the fact that  a few good people still exists today who will literally drop everything and support each other, include the importance of drawing up a will, just do it and leave it with someone you trust, bank financial manager/consultant, lawyer, etc.  Make sure your next of kin knows where it is.  Appoint a good executor for your estate.

If you own a vehicle(s) and it is registered in your name, sign the form to transfer the vehicle into someone else’ name and file it with your vehicle’s papers. I cannot tell you how much this will assist with wrapping up vehicle owner transfer and registration!  Make sure you have the original papers for your vehicles!

Leave instructions with your spouse, next of kin, etc to know if you would prefer a cremation or burial.  Make your wishes known to everyone who will have part in organizing your funeral or memorial service. (Put it in your will.)

Make sure your firearms are secure, registered and licensed and contact your local police department to make the proper arrangements for them. You may nominate an heir for your firearms but must make sure they have a competency certificate. And they need to follow the proper legal procedure to then own this firearm(s).  Find out about this.

Its only a few things that will make life easier for those left behind.  There is so much more to do and think about, it would just be good if we are all more prepared for that moment we don’t even want to think about.

Although I have been whining about DEATH, I have to say, this past week, I have rediscovered the values of family.  My family is a close knit group, we have each others backs.  When we need each other, we drop everything and we go and support the ones we love and hold dear.  I SALUTE my girls!, I know that when the day comes that I need my sisters and mom, I can count on them to pick me up.  I will always be there for them.  I think that my relationship with my own little family in East London is going to receive a big overhaul.  My husband is precious to me, I will hold him extra close and dear from today.