just us

Deqlan "what a beautiful rainbow"

dont you think africa has the most beautiful skies? deqlan loved the rainbow " what a beautiful rainbow "

"thank you for the Gautrain"

deqlan went on his very first school outing today, on the gautrain

the theme at school for the last 2 weeks has been transport and ayline did a great job of preparing the penguin class for the big day

they knew which step came where they knew they were going in a car to the bus station, then in the bus to the gautrain station , to take to the train to hatfield. they would then turn around and come back home to centurion

i was a bit anxious about the big event , but dada immediately said yes to deqlan going!!

i mustve drive ayline, ash and candice crazy with all my questions and checking on specific things !!!

i was promised a text to let me know they were safe a the station and smiled from ear to ear when i got it! and again when they had arrived back at school! nanna and i couldnt wait to go amd get him !!

ayline beamed as she told us how great the outing was for everyone! all the boys loved it and didnt feel overwhelmed or upset , not even once!

she told us that deqlan sat back and relaxed in the train as if he goes to work every morning on the train :) he loved reading the logos and labels in the train as well as the businesses on the sides of the road :)

when he got back to school he even said " thank you for the gautrain" how precious is he?

deqlans reading is just amazing he can read everything! and has even figured out where to put emphasis on which words! what a gift our great god has given him

his vocab continues to flourish and his response to conversations and questions is to beautiful for words. there are still moments of echolalia , repeating what we say instead of answering a yes or no or choice between to items. when i went to sit with him in his room the other night he looked at me and said " what do you want?" ha ha ha . he also asked dada the other day " where is samm?" ;) i prefer mama my sweetheart ;)

we looking so forward to all the christmas excitment and cheer and putting the tree up and getting the christmas carols going. i love going to mass this time of year especially, we light adbent candles every sunday, towards christmas eve and sing the most beautiful songs!

we will be going away for a few days in december to the coast, so looking very forward to that to!!

logans birthday is less then 2 weeks away- 10 years old! cant believe how grown up she is, we are incredibly proud of the beautiful person she is :)

please pray for my grandpa tomorow as he goes for his 3 monthly check up, that his counts are down plse lord

my laptop is giving me hassles at the moment so havent been able to work and facebook and email properly trusting it will all be sorted ny next week

have a lovely weekend everyone

god bless

lots of love

mark samm deqlan logan

sacred heart of jesus we place our trust in thee all for me oh lord oh my jesus all for thee

HAPPY BIRTHDAY NAN

My Darling Nan

Wishing you a Happy Birthday, your first in heaven

I know you are having the most beautiful party with Our Lord and all the angels in heaven today.

Thank you for all the little signs you continue to send to us, letting us know are around us all the time. Thank you for the beautiful bird that came to visit our breakfast table this morning :)

My hurt physically ached and missed you the moment i opened my eyes this morning

The day that we normally call each other on and wish each other Happy Birthday , the candles we blew out together , the Happy Birthday song sung to both of us, the joy in watching you open your gifts and have Grandpa read your cards to you.

I got us some chocolate eclairs, and we ate them first thing this morning, they were your absolute favourite

Mom made a beautiful candle in your favourite colour of violet, and we lit it by your picture.

Megs chose beautiful flowers and put them next to your photo with a candle

We hope you enjoyed the little things we did to celebrate you and remember you and feel you close to us today!

Thank you and Grandpa for the beautiful angel charm, holding out her hand , giving me a blessing, each time i look at her, i will treasure it always

Happy Birthday My Darling Nan, my birthday girl, we love you , we miss you more each day, and i thank you for all the beautiful birthdays God let me share with you - i will always share my day proudly with you , love you with all my heart

Your Birthday Girl with a rainbow round my face

what happened to October?

deqlan is doing fantastic! thank you lord! he continues to love his ipad , i cant download new apps fast enough for hime to enjoy :) his favourite ones at the moment are puzzles and learning how to write by following letters with his finger and also writing free hand - i love u is a common favourite at the moment :) he also loves typing out my phone number and the names of our family members. deqlan still dislikes to use pencils and crayons to write, but loves using his ipad or the computer to type out the letters.

deqie continies to love little leaps and his beloved teacher ayline :) discussions for grade r and grade 1 options have already started and we await finalisation of the grade r arrangements, at little leaps. the hunt is on for a suitable primary school for our big boy- what a tough decision. not easy to find a "little leaps" equivalent in primary school terms, but the search and research continue and we trust god to lead us to the perfect option for deqlan

october seems like a blur for me - days melted into weeks and before you knew it we were in november already. i had many tummy issues and many trips to the doctor and hospital at the most wonderful times of early hours of the morning or weekend . many visits and many tests later it seems like irritable bowl syndrome, perhaps some seafood poisoning on one occasion and what looked like gallbladder symptoms, were the root of the trouble. i had a gastroscopy last week which thankfully lordn turned out to be all clear. im watching everything i eat as many foods seems to make matters worse. tomatoes. dairy. citrus are no good at the moment and keep me up like this morning , so i grabbed the oppotunity to update our blog to pass the time and the cramps !

next week we celebrate my and nans birthday - our first birthday without my nan physically here with us. ive been trying to put the thought at the back of my mind as it hurts so much to think about not having my birthday girl with me to sing to, to blow our candles out together, to watch open her gifts we so lovingly chose. i promised grandpa im going to try my best to enjoy the day celebrating the wonderful memories i have of nan and the 32 years i was blessed to share my birthday with nan.

have a lovely weekend everybody, thanks for popping in and your continued prayers and love for deqlan and our family

all our love god bless

mark samm deqlan logan

be still and know that i am god

ps-wish i could get my phone to type capitals on our blog!

Some Extremely Reasonable Suggestions for 'Typical' Parents, Family, and Teachers by Daantjie Badenhorst

1. PLEASE don't try to make us "normal." We'd much rather be functional.
It's hard to be functional when you have to spend all your time and energy focusing on making eye contact and not tapping your feet.


2. PLEASE don't overprotect, indulge, or cosset us. We already have enough social problems without additionally learning to be spoiled and self-indulgent.


3. DON'T teach us social skills according to how you wish the world was, or even how you think it is. Look carefully at what is really going on and teach us real world rules.


4. DON'T talk, and/or act as if your life would be perfect or soooo much easier if you had a "normal" child. We don't thrive on knowing that we are the children you didn't want.


5. DON'T make the mistake of thinking that teaching us typical behaviors and successful masking means we are "cured." Please remember that the more typical our behavior seems, the harder we are working. What is natural, simple behavior to you is a constant intense effort for us.


6. PLEASE don't punish us with rewards or reward us with punishments.
For those of us who find recess to be the most stressful part of school, any action that will keep us in from recess is one we will learn to repeat ad infinitum. Getting rewarded for good behavior with fashionable but really itchy clothing will train us to NOT behave too well!


7. If you assiduously train us to imitate and conform to other children's behavior, don't be shocked if we learn to curse, whine for popular toys, dress in ways you don't like, and eventually drink, smoke and attempt to seek out sex as teenagers. Those "nice kids" you think so highly of do a lot of things you don't know about - or don't you remember high school?


8. Please DO give us information about autism/Asperger Syndrome early on at a level we can digest. We need to know what's going on - and we will figure out that something is "wrong" with us whether you tell us or not.


9. DON'T avoid a diagnosis or help for us because you are scared of us being labeled. Without that diagnosis and appropriate support, our teachers, family, and fellow students will give us plenty of labels - and we might just believe them if we hear them often enough.


10. DON'T force us to do things we can't do. A forced social situation won't teach us social skills any more than dumping us in the middle of the Pacific Ocean will teach us to swim.


11. DON'T punish us for what other kids do. The fact that other kids tease and torture us for benign "autistic" behaviors doesn't mean we need to change, it means they do. Needing to bounce or swing for the whole recess is not morally wrong; tormenting someone for having a neurological disability is.


12. DON'T attempt to use humiliation or public embarrassment to "teach us a lesson." We get way too much of that from other people, and the only lesson learned is that we can't trust you either.


13. DO punish us (or give us "consequences," heaven help us) when it is necessary to do so - but make the connection between cause and effect very, very clear. We often need visual aids to understand how our behavior can cause an unwanted result for us!!!


14. DON'T cut us too much slack when our behavior is potentially dangerous to us. For example, adolescent pre-stalking behavior should result in serious consequences - because not treating such behavior seriously when we are young can lead to problems involving law enforcement when we're older!


15. DON'T trust untrained camp counselors, "typical peers," or youth pastors to be able to deal with Asperger Syndrome. Often their answers to our problems involve highly destructive phrases like "try harder," "you could do it if you really wanted to," and "snap out of it."


16. DON'T model one thing and teach another. If you yell or hit when you're mad, we will too. If you rage at us, don't be shocked at our "autistic rages." And DON'T lecture us about our stims while you smoke, tap your foot, pick at your manicure and down your third double-latte today.


17. DON'T require us to be wildly successful at something because your ego has been wounded by having a "flawed" child. We can't all be Temple Grandin.
Remember, all honest work is noble, even if you can't brag about us to your friends.


18. DO spend time with our siblings, even if you need to arrange for respite care to do so. Schedule something special for them without us along, even if it's just lunch at a fast food joint once a week or so.


19. DO ask for help for yourself as needed. Take advantage of respite care when you can. Get cognitive-behavioral counseling and/or medication when you are depressed. Don't try to do it all alone. Remember, it is much more important that you get a nap and a nourishing meal than that we have a tidy house.


20. Most important, please, please, please DON'T wait until we're "cured"
or "recovered" to love and accept us. You could miss our whole lives that way.


Written by Jennifer McIlwee Myers, Aspie-at-LargeContributor to the book "Asperger's and Girls" published by Future Horizons; Asperger's women offer candid reflections and the field's leading experts offer advice