Navigating the Labyrinth - Discovering PANDAS

“Then we got into a labyrinth, and, when we thought we were at the end, came out again at the beginning, having still to see as much as ever.” ― Plato

 

When I think of a labyrinth, the wonderful movie directed by Jim Henson and starring David Bowie comes to mind, followed closely by the amazing graphic art work 'Relativity' by M.C. Escher. (Pictured left.)

Maurits Cornelius Escher (1898 - 1972) was one of the world's most famous graphic artists. I'm sure many of you will be familiar with 'Relativity'. I'm sure this image and other works by M.C. Escher, inspired the design for one of the sets in the 'Labyrinth' movie. According to the biography on his official website http://www.mcescher.com/, M.C. Escher was a keen observer of the world around him. Playing with "architecture, perspective and impossible spaces," his graphic creations show us that reality is "wondrous, comprehensible and fascinating."

 

 

When you have a child that learns and interacts differently, like M.C. Escher, you spend a lot of time observing your world to comprehend it so that you can help your child discover the wondrous possibilities. You play with your environment and tools, you are constantly looking at things from different perspectives, and you are always dealing with seemingly impossible situations. Yet, just as you think you have hit a brick wall, you suddenly find a new path or stairway. It maybe be upside down or sideways, but it will take you in a new direction.

 

A new direction that we are exploring right now is a possible medical reason for recurring symptoms that have a huge impact on Sam's learning and behaviour. At the end of July, after he had been unwell, we noticed that his behaviour had begun to change. Then one weekend, it was like 'our' Sam had been replaced by a totally different little boy. The number, duration and intensity of his 'stimming', episodes increased dramatically. He was not sleeping well, so he was always tired. He began wetting his bed again at night, he developed a number of tics that we had never seen before - grunting and sniffing; and his anxiety levels soared. The smallest thing could trigger a melt down. It was like everything in Sam was short circuiting.

 

Then the feeling of de'ja' vu hit. This was exactly what had happened last year. Sam had suffered from a string of infections at the beginning of Term Three, including Strep, which necessitated a course of antibiotics. Then everything went haywire. This is when we decided to take him out of school and home school instead. At the time, my father had come across an interesting article about a condition called 'PANDAS' - Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.

 

In simple terms, courtesy of  the PANDAS Ireland website, "when a person has an infection, the antibodies produced in their system fight the infection. In Pandas, however, it is believed that the antibodies attack the cells in the basal ganglia of the brain, causing abnormal movements and other neuropsychiatric symptoms."

 

We didn't look into it any further last year, but this time we could not ignore the possibility that there might be a link between Sam's illness and his change in behaviour. Also, people with 22Q 11.2 commonly suffer from autoimmune disorders. This new information has also caused us to review earlier behavioural episodes as far back as 2011 when Sam first began 'stimming'. Initially we had thought this was Epilepsy, but after investigations by a Paediatric Neurologist, Epilepsy was ruled out. Prior to these early episodes, Sam had experienced a long period of ear and chest infections. Could that have been when it all started?

 

So I delved further into PANDAS online and discovered many interesting case studies and a lot of new medical research, most of which has been carried out in the United States. However, one blog post I happened across by a mother of a young boy in Ireland, resonated with me.  It was called "My Son and P.A.N.D.A.S" by KC Bloggs. Her experience lead her to create an organisation, PANDAS Ireland, to help raise awareness of PANDAS and this resulted in a PANDAS Awareness Conference at the end of 2014. On the website they have links to videos of key speakers and one by Dr. Rosario R. Trifiletti MD PhD, was particularly enlightening.

 

With research in hand I visited our wonderful GP with Sam to talk about our suspicions and concerns. My gut and Mummy instincts told me there was more going on than just the 22Q and that a clear pattern has evolved over the last few years. Enough to warrant further investigation. We now have a referral to see an Immunologist and Sam's Neurologist. The Neurologist appointment is booked in for the first week in October. Waiting for an appointment date to come through with the Immunologist.

 

It is now almost two months since Sam began to struggle again. We've had very bad days and a few ups and downs, but he is slowly coming back. This school term, like last year, has been difficult, but thankfully we have not lost any ground. Next term we will bounce back and finish the year on a high.

 

As Didymus from the movie 'Labyrinth' says - "All right then! I can conquer this mountain!" 

Our Learning Journey Continues

 

It's been over four months since I last posted. So much has been going on that I just found it impossible to find the time to put fingers to keyboard. I'm one of those insane people that always take on way too much, but when there are so many exciting projects that make a difference and are fun, I just can't say no. Now here we are, coming to the end of August and yes, I still have lots of balls in the air, but I am enjoying a few quiet minutes with a cup of coffee before taking Sam to his weekly speech therapy session. I will attempt to bring you up to speed.

 

Home schooling has been going well. We have made so much progress this year. Sam has a natural affinity for technology and a talent for Math related activities. I'm amazed how quickly he picks up and masters new Math concepts as I introduce them. He is easily on par with his age peers when following the Australian Curriculum for Year One. Anything that involves detailed instructions, construction and puzzle solving engage him and keep his attention. Lego is an obvious 'go to' activity and watching him pour over the instruction books to put together buildings and vehicles, not simple ones I might add, is fascinating. Of course, his love of Minecraft goes without saying and I'm always looking at ways to bring it into his learning. I'm even investigating the possibility of setting up our own private world on a host server. This will necessitate me jumping into the deep end to learn all that is Minecraftm but then I can incorporate it into our learning program. I've been reading blogs from other home school parents that have done it. They have even turned it into a mini business by offering online classes. It's amazing how much you can use Minecraft across so many disciplines. If you are interested in knowing more, check out these links. I found them in a newsletter sent out by the HEU (Home Education Unit - QLD Department of Education.)

 

SKrafty:    http://whenyouriseup.com/ 

Minecraft Homeschool:    http://minecrafthomeschool.com/ 

Homeschool with Minecraft:    www.homeschoolwithminecraft.com

 

Reading and writing are still Sam's biggest challenges, but even so he has made significant improvement. Not long after my last blog post, I came across an online reading program called 'Reading Teacher'. Best of all... it's free! This site offers lesson plans, printables, online stories and links to resources used in the lessons. It is a phonics based, systematic reading program also known as the 'I See Sam' series. Of course, my Sam loves that the main character, a lion, is called Sam. This program has made a huge difference and I highly recommend it.

 

Another great FREE online tool I have discovered is 'Make Beliefs Comix'. I use it to create mini picture stories and together Sam and I come up with a written story. Then, working on one panel at a time, I write simple text for each panel on the white board. We read it together and then Sam writes the story next to the picture in his mini comic story book. In one fun activity we cover comprehension, reading and writing.

Picture story created using Make Beliefs Comix.

Assessing Sam is not is not straight forward, but at this point his expressive speech in general terms is around that of a four year old. On really good days, it can be that of a four and a half to five year old. His ability to use more complex verbal sentence structures has dramatically improved over the last six months. On the other side of the coin, his receptive language and comprehension is far more advanced and likely on par with a typically developing child of seven. As I wrote above, the reading program 'Reading Teacher' has been a fantastic tool for developing Sam's reading ability. He is now reading fluently at a level of an average five and a half to six year old.

Most of our efforts over the last few months have centred around reading, writing and maths. Building a strong foundation for future learning. But Sam still goes to gymnastics each week and it has been wonderful to see his positive progress. Gymnastics develops so many physical skills, but it also gives Sam the opportunity to spend time in a class environment with other students. Here he must listen, follow instructions and take turns. Although Sam began the year working one on one with the Head Coach, he has now settled into his Pre-Gym sessions really well and he loves his new coach, Marie.

Sam's situation is complex and can change very quickly. We are now facing another path of discovery as we explore a different medical condition that may be the cause of regular episodic changes in Sam's behaviour. Changes that we now see are forming a pattern from as early as 2011. But more on that in later posts.

Our home schooling journey has evolved so much since our humble beginnings last year and continues to do so. I've discovered that I need to be creative, flexible and adaptive to Sam's needs. It's a joy to see him learn and grow and although he is the student, he really teaches me just as much as I teach him. 

 

Discovering Me - The Long, Winding and Bumpy Road

I found this on Facebook yesterday. I fell in love with the words. They describe my life perfectly.

I've never been one of those people who knew from a very early age what they wanted to be. My dreams for the future were always like waves on a beach, they constantly changed; sometimes they were calm and thoughtful, while at other times they raged with white passion and rushed head long at the shore line claiming everything in their path. I envied people that appeared to have such a focused determination and never swayed from their chosen path. Why couldn't I be like that?

One of my difficulties was that I enjoyed, and had a knack for, so many different things. Life was like a buffet of experiences and I wanted to eat as much of it as I could. Sometimes it might only be a nibble, but now and then I'd find something that tasted so good I just had to have a double helping. Eventually though, I'd tire of that dish and would begin looking for a new interest to satisfy my hunger.

I've always jokingly called myself 'a jack of all trades, but a master of none'. I've come close to being pretty good at a few things, but I've never focused on anyone of them for too long to be great. It is frustrating. Why was I given these abilities, but not be able to really do anything with them? I wanted my life to count for something!

Then I had kids. I am not going to lie and say that once I did I had an epiphany and everything fell into place. In fact, it was almost the opposite of that. I was never what you would call maternal and although I never not wanted children, I wasn't in any hurry to experience them either. In my early twenties, co-workers on maternity leave would visit the office and while everyone 'oohed' and 'aahed' and made silly gurgling noises at the pink blob in it's stroller, I would dash off to the kitchen to make a cup of tea. Yes, I was hiding. I never changed a nappy until my daughter was born. I was thirty six years old.

When my daughter, Zoe, was born four weeks early. It was a complicated birth - she got stuck and required an emergency C-section. I was not able to hold her straight away and she had to spend the next two weeks in hospital. So there I was, a 'non-maternal' older new mum and at the first hurdle, I was already crashing. Ten months later I was in the suffocating clutches of post-natal depression.

Depression is like a slow fog that creeps slowly around you. At first, it keeps its distance, but little by little it inches it's way closer and then one day you are completely enveloped and unable to move. It is oppressive and thick, like the air before a really bad thunderstorm when the sky is full of heavy black clouds pressing down. When I reached the stage that I would keep the blinds closed during the day and I could not even face going out to the washing line to hang clothes (instead I would put them in the dryer), I knew that I needed help.

 

That was the beginning of 'un-becoming' the person I was. It has taken almost nine years to get to where I am today, but it took another game changer to make me realise what my journey was really for. That game changer was my son, Sam.

 

If you have been following my bog, then you will already know quite a bit about Sam. For those that are joining the Bumpy Road Way at this point, Sam has 22Q 11.2 Deletion Syndrome. A very common, but little known genetic syndrome that can affect almost every system in the body. Every 22Q hero has a different story. Sam has severe speech and language delays as well as gross and fine motor skill issues. We have been on this journey since he was about eighteen months old (he is now almost seven), but it was in late 2012 that we received the diagnosis of 22Q. Since then we have faced many challenges, but our biggest was when Sam began school last year. Sam is a gorgeous, happy and engaging little boy and somehow manages to win the hearts of just about everyone he meets. He was popular with his peers and teachers at school, but despite our best efforts, he struggled as the year progressed and when he had a long bout of illness in the middle of the year, his anxiety levels sky rocketed and he just could not cope. I made the difficult decision to take him out of main stream school and home school him.

 

This is where my 'unbecoming' journey and the realisation of 'what you were meant to be' collided. Everything I had done in my life, all those experiences, my talents, it all suddenly made sense. I was supposed to be there for Sam. To learn how he learns. To use my ability to think outside the box and find ways to engage him. To help him begin his journey and achieve his potential. He has made me a better person and a better mother.

 

Having said all that, I am in no way Mary Poppins and Carol Brady rolled into one. I still detest house work, my laundry pile is forever over flowing, my garden has been taken over by weeds and both the kids drive me dotty at times.... but, I wouldn't change them for anything.

Zoe and Sam

 Thank you to 'Butterflies and Pebbles' for your inspiring words https://www.facebook.com/sc.louriesbutterfliesandpebbles



Development Delays - Pushing the Envelope

One of the difficulties in having a child with a diagnosis, whatever that diagnosis maybe, is that some people stop seeing the child as a person. They start seeing them as a set of deficits and differences, a problem that needs to be solved. Nurturing and encouraging the child's strengths and talents, of which there can be many, may not seem as important because all the attention and focus is on 'fixing' the issues. As a parent I have been guilty of this, but the more time I spend with Sam as an educator, rather than his mother, my focus is shifting. I'm learning to use a wide-angled lens, rather than a zoom lens.

 

Sam is incredibly curious and loves to know how stuff works. He is more than capable of taking in complex concepts and although he may struggle with foundation skills like reading, this does not impact on his understanding of the world around him. He is very visual and that is a strength I use to his advantage. This week we continued looking at where rain comes from - The Water Cycle - but we looked at a smaller part of the process with a very cool experiment I found online called 'Weather in a Cup'. It is a hands on activity that demonstrates the process of condensation and precipitation in a simple, but fun way. All you need is a clear plastic cup (or jar), water, shaving cream and blue food colouring. Check out the pictures below.

 

Development delays do not mean you have to delay learning. In fact I believe in pushing the envelope by exposing Sam to more advanced knowledge where he has a strength. When he achieves goals he feels more confident. This confidence then helps him when he tackles tasks that do take more effort. 

 

There is no better feeling than seeing Sam overcome a learning challenge.

 

What got up to this week.

 

More new sight words this week. First we sound them out, then we write them.

And today we are feeling happy :)

Learning about vowels.

Mazes are a fun way to work on pencil grip.

Reviewing our numbers 11 to 20 with a fine motor skills activity. Good old Play Dough.

Watching a learning video on You Tube - counting 11 to 20.

We finished our work with addition using the number line method. Sam picked this up straight away.

This was our 'Weather in a Cup' experiment.

 

We also watched the You Tube song video 'The Water Cycle' again. It's really catchy.

Very effective isn't it?

The shaving cream represents a cloud. You simply add drops of food colouring (condensation) until the food colouring starts to go through the 'cloud' into the water below - precipitation, or rain.

We finished our experiment by recording our observations.

More sight word practise.

Creating number art with paint and cotton buds.

Another sight word activity. We wrote the words in glue, then used coloured sticks to make the letters.

Sam decided to use lower case letters for 'then', hence the broken sticks.

The muscles in Sam's hands and wrists have begun to stabilise and strengthen, so I am spending more time on writing to improve his pencil grip.

Using shells for counting practise. I wrote the numbers 1 to 20 on the back of the shells...

... then he sorted them into the correct order.

Next he used the shells to help him with his math activity sheets.

This was a really fun geography project. We built a city. I found two places online where I could download roads and building templates. And they were free.

Sam coloured his buildings while Daddy helped stick them together.



Daddy helping Sam create a road layout.

Next he added the buildings and other features, like trees. We made the trees using circles of green paper and clothes pegs.

Then came the animals, Minecraft characters and of course cars.

We had a good selection of buildings - school, library, shops, restaurants, a church, tall buildings and houses.

 

If you would like to build a city of your own, below are links to the websites.

 

https://www.teacherspayteachers.com/Product/Free-Printable-Road-for-creating-towns-great-Geography-resource-K-3-1459972

 

http://www.parents-choice.org/article.cfm?art_id=254

I Can't Do It!

"I can't do it," cries Sam as he looks at a math activity sheet I had copied for one of his lessons. "Next week." Meaning, that looks really hard and I don't want to deal with it. Let's leave it until next week and then maybe you will forget about it.

 

This may surprise you, but these words are music to my ears.

 

Twelve months ago, when Sam started Prep, he had very little expressive language. He could understand a lot more than most people realised, but he was not able to verbalise his feelings and needs very well. This lead to frustration and behavioural problems. He would cry and physically try to avoid situations he found difficult. Today, he can tell me how he is feeling and I can help him with my words and actions. I tell him that I know it may seem difficult at first, but I am here to help him and we will do it together... and we do.

 

Last week Sam worked really hard. I was very proud of him and wanted to acknowledge his effort. At school, students' efforts and achievements are recognised with rewards, e.g. Student of the Week awards. I see parents posting pictures of their kids holding their awards, beaming and a little part of me feels sad. Sam misses out on that. So I decided to create my own reward system and last week Sam received my 'Star Student' award for 'Being a Great Learner'. He was chuffed.

 

Here is what we did last week.

 

More sentence building. I found this activity online. The coloured words make creating sentences easy and fun.

We practised matching our number words and numerals.

 

We spent time practising our addition skills (and writing.)

Shape activity sheets also helps with our writing skills.

 

We learnt about where rain comes from. Sam loves the You Tube video and song I found called 'The Water Cycle'. He can sing along with it now.

This week we started looking at shape patterns.

And in History, we looked at Sam's Story. Then...

 

...and Now. We talked about how he has grown and changed. Each year of his life had a story and a picture. Sam cut out the pictures and we matched them to the correct story to create a picture book.

His sister was off school sick one day so she joined in this activity. We created more art from our weekly sight words.

 

Beautiful.

 

This was a really fun art activity I found online - marble painting. You drop a couple of marbles into different coloured paint.

 

You drop the marbles onto a piece of paper in a baking tray...

... then you roll them around.

 

Marble masterpieces! Easy.

More sight word practise. This time he wrote them on the chalk board.

I wanted to assess Sam's understanding of letters and the sounds they make. His speech difficulties affect how he responds when I ask him what sound a particular letter makes, so I made an accommodation and turned the activity around. Each line had three sets of letters. I asked him to circle the letter that makes the sound....E.g. 'ah' for ant. Doing it this way, Sam was able to correctly match the sound and letter for each letter of the alphabet.

More number recognition practise. I shuffled the plates, placed number '1' on the ground, then asked Sam to find the next number as I sorted through all the plates in my hand. When I came across the correct one, he shouted out 'Yes', pulled it out and put it on the floor. Whilst he still has difficult pronouncing '13', he recognises all the numbers and knows what order they follow.

Making patterns a bit more interesting. We had toy soldiers and blocks to play with. I would start the pattern and then ask Sam would finish it. This meant he had to identify the pattern first. Not a problem.

Sam then decided I had to play too. He created patterns for me to follow.

I created a simple template with six circles and laminated it.

More patterns with coloured pegs. Bonus - fine motor skills get a work out.