Plans He has for them

Before I got married, I read every verse in the bible with the word 'love' in it.  I figured this would be a good way to learn what real love is and to be able to know for certain what I wanted.  it stood to reason then that when we started trying for a baby, and I was nervous we were going to have trouble falling pregnant, that I read all the verses with the word 'hope' in them.  Just before I fell pregnant with Hope I wrote in my journal that 'Hope' would be a good name for a girl.  I had learnt that ultimately, our real hope is in who God is....we don't always get what we hope for here on earth but that verse about how hope does not disappoint...well it is about God and His character and His promises....We place our hope in God for who He is and in His salvation, at the end of the day, that is what matters most....our eternity.

When we first heard there may be a problem but we didn't know for sure and were waiting for those 12 week blood results, God spoke to me and asked me if I wanted a child with a perfect body or a perfect soul...it was a no brainier for me and I instantly replied...soul!....sometimes I wonder what would have happened if I had said body...but it prepared me for those many months waiting to meet Hope, it carried me through...this hope in who God is, a good, loving, creator, father, protector, He knows what's best.  I know that somehow for Hope (this is particular to Hope) her having Down syndrome has something to do with her soul.  I don't understand what but it's important and God gave me hint so I know it's not some randomly, strange and sad occurrence.  It's His number one plan for our sweet girl.  We agreed to name her Hope before we even heard about the high chance of Down syndrome...what a perfect name for her!  It was meant to be!

When I was pregnant with Arthur, no such amazing word from the Lord seemed forthcoming.  When had a list of over a hundred names and seemed no closer to an option as the day grew closer.  I felt so bad for the little unnamed boy to be arriving soon! I worried if this is how it would always be for him, would his sister get all the special attention and would we ooh and ahh over her every move but not his?

One name had stuck in my mind because I had been looking for names that meant guardian or protector because somehow I felt that despite it sounding bad, he actually would have to be that for Hope one day.  We went in with a list of five names on the day of his birth, Arthur was last on the list, Jed was the top because Bryan wanted Jed I Johnston (sigh ...the joys of being married to a Star Wars nut).  The minute Arthur was born, both Bryan and I took one look and separately, without telling each other till an hour later, decided that he did not look like a Jed (what a relief)...  We spent 45 minutes debating between Joshua and Arthur and in the end despite feeling it was weird, different and old fashioned we looked at each other and said "well he really does seem to be an Arthur!".

How amazing that Arthur means protector of the bear, and Hope's middle name Uraula means "little bear"!  I think God pulled a fast one on us :)

As I watched them throwing a ball to each other yesterday, giggling hysterically as they roll around on the floor trying to get toys out from under beds in the morning and as I listened to them charging round and round a chair for ages this afternoon with peals of laughter....I feel blessed, and not just because of my lovely children, but because I know God has a special plan for each of them and it's better for their eternity than I can imagine!

How do typical developing siblings cope?

Q: how do typically developing siblings of a child with Down syndrome cope in life?
A: I have been told that often siblings feel left out because more attention is paid to the child with special needs, I've been told to have more children so Arthur doesn't feel like this, I've heard that siblings of a child with Down syndrome are more caring and compassionte people, and that they are protective of their sibling with Down Syndrome.
I need to do some more homework on this but I found some links that were interesting, one talking about how families are impacted and what makes some fair better than others, and then a very interesting article about what the 'sibling whisperer' has to say....I liked this article so am posting the link first and then the other one.

http://www.sheknows.com/parenting/articles/981881/siblings-of-children-with-down-syndrome

http://www.down-syndrome.org/information/family/overview/?page=3

My little hugger

Hope has always been good for a lovely warm cuddle and when she was born I loved they way she would just melt into your arms.  I know it's something to do with low muscle tone but let's face it, holding a baby that just moulds to your body is sooo lovely!
However, she has always been a bit cautious and only had a few people that she would allow to love her with hugs and kisses, lately she seems to be expanding her horizons and has discovered that the majority of the time she gets a great affirmative and positive reaction to her sticking arms in the arms, looking a person in the eye and saying "Up!".  I have been reading other blogs about children with Down syndrome who hug a lot because there don't seem to be any scientific reasons for this hugging phenomenon and it seems that this love for hugging other is quite common among people with Down syndrome.
I feel terrible that I am looking at my daughter's hugging with such cynicism because when she does it I feel it must be a reflection on her needing more love or attention and maybe that means I'm not giving her enough!  What if this hugging is just a rather successful and satisfying way to feed a hunger for love and attention for herself.  Aren't I awful!   Here I am watching my daughter giving hugs to strangers and getting them in return and thinking it's bad for her emotional development and well being, her health (because who knows what colds and germs strangers have) and she is not discriminating between who could be a good or bad person and that is a bit scary as a parent to an extra vulnerable child!
It's probably more a reflection on me and my heart than anything else.

I would like to get to the bottom of understanding why she is suddenly into hugging people but I think I should also enjoy Hope sharing herself and her love.  I'm really short-changing my daughter if I think that she is not fully capable of giving love to others and identifying who needs it, instead I should be encouraging her loving others, teach her to discriminate as she grows (if in can, so as to keep her safe) and I need to remember that sometimes it doesn't matter how the gospel is preached as long as it is preached! In other words if Hope's hugs are healing and wonderful for others, who cares if she gets some benefit back...why do we ( well I) think that hugs should be one sided!
My mom had to get a book on feelings when I was little because she said I wasn't able to identify mine well and I didn't like hugs etc. I suppose now I have the perfect chance to improve my emotional IQ just by observing Hope in action ( you should have seen her doing the hug rounds at Arthur's bday party) and giving her hugs every morning!

Can Children with Down syndrome attend mainstream schools?

Q: Can Children with Down syndrome attend mainstream schools?
A: yes they can, in fact more and more these days children with Down syndrome are attending normal schools.  In the past children with Down syndrome were institutionalised or given very little education as it was assumed that they were not educable. This was far from the truth and with good input and often the presence of a facilitator children with Down syndrome can cope well in a mainstream school and the children in their class benefit from learning to be accommodating and kind to people who are different.  It doesn't mean that all children wit Down syndrome should be in mainstream schools, if the child is drowning in the class and missing out on making friends then it's worth thinking about 'special' schools.

One one two...

This week Hope has been learning to count! She is suddenly fascinated by collecting things and then handing them over whilst counting one...one...two!  Bryan has been doing a great job repeating this game over and over, and I am very thankful for all our extended family who patiently participate in this back and forth game.  I think she really has got the concept now and can count to 2!  If I ask how many she has she will either say 1 or 2 appropriately, this is super exciting as I had decided that because she is using her left hand most of the time that she was probably more on the relative side of things...but then she wouldn't draw or paint or do anything remotely arty! This week along with the counting she has been feeding herself for the first time with her right hand!  Weird coincidence but interesting ....maybe she is more left-brained!  

I think we are truly blessed to have grandparents and great aunts and friends who have sat going "one ...and one...makes two!"for ages. Sometimes I feel guilty for not having the patience to play the game endlessly but then I remind myself that I do a lot of other things with and for Hope and Arthur and I just think I'm blessed to have the support in raising Hope, it's one of the reasons I called this blog sharing hope...so many people share her with us and participate in teaching her and loving her...God knew a thing or two when He made us family!

How well do children with Down syndrome do with mathematics?

Q: How well do children with Down syndrome do with mathematics?
A:
Children and adults with Down syndrome vary widely in their achievements and interest in number skills and mathematics. There is only a small amount of research in the area and little that provides guidance for effective teaching methods and materials. Typically, the achievements of individuals with Down syndrome in number are at a lower level than their achievements in literacy. However, there is a wide range of progress and while some children find number difficult, other children with Down syndrome enjoy mathematics

The games and activities for teaching children about numbers in their early years should be fun and encourage an interest in learning. Developing children's language understanding is an essential part of early maths learning and methods for promoting the development of language skills should be incorporated into pre-school maths activities. Maths activities will also promote children's more general language and cognitive development.

The children's visual learning strengths can be used to support learning about number and maths. Learning will also be influenced by daily activities and play with the support of their families and carers.

Developing an enjoyment of maths through play, visual and language learning games will help children to join in and progress when they go to school, as well as laying the foundations for understanding the system of number. Introducing the language, ideas and relevance of time and money in children's early years, together with more typical number and early maths concepts, may help children with Down syndrome to master these areas of abstract measurement and problem solving that are currently challenging for the majority of young people with Down syndrome.

http://www.down-syndrome.org/updates/2031/

Hopey pics

Just a few pics of miss Hope because sometimes it's just lovely to look at her beautiful face :) and i need an early night! Snuck in two Arthur pics too!  I couldn't upload today's pic on ipad so it is on Facebook but I'll post it on blog another day! Still trying to figure our how to set up site for phones and iPads! 

Memory Problems

Q: Do children with Diwn syndrome have memory problems?

A: Long term memory is made up of implicit (automatic skills we learn like riding a bike) and explicit memory (storing of experience and events. Children with DS have more difficulty with explicit memory possibly because it conscious recall using language.

Working memory contains verbal and visual short-term memory and children with Down syndrome have much better visual short-term memory skills than verbal short-term memory.  This means that they will learn better with visual cues rather than sitting and listening to something. 

There is some research that suggests that memory training games can have improve both verbal and visual short- term memory in children with Down syndrome.

Milestone racing

Personal DS comment:

Looking back to when Hope was a new baby I was pretty stressed about her reaching all the right milestones as quickly as possible.  I felt a lot of pressure to do as much as I could to help her reach them and worked pretty hard to help her with those motor skills.  

We have a lovely friend from church who is a physiotherapist and she came and visited regularly giving me a lot of encouragement and help getting Hope first rolling, then reaching her feet, then sitting and then belly crawling!  A lot of professionals said that it was unlikely that Hope would crawl and we should just focus on other skills but Shayne was determined she would crawl and encouraged by her belief in Hope and perseverance, I would lie on the floor with Hope and her favourite book coaxing her across the room back and forth. She would only crawl for a book and it was what Bryan called the wounded soldier belly crawl.  We did this for 7 months almost every day and then lo and behold one day at around 14 months she put her little hiney in the air and did the most wonderful bear crawl ever!  I was soooo excited because firstly she was crawling and I knew that was so good for those weak little arms and secondly I felt this affirmation inside me that she will reach those damn milestones and I shouldn't feel defeated when it seems like it will never happen!

I was so flabbergasted when Arthur just started crawling on his own with no imput from me at all that I said to a friend "wow you can have a bunch of 'these' kids because they teach themselves everything!"  It seems terrible to say something like that but having a child with Down syndrome can be exhausting at times and you do have to teach a lot of things that most children will pick up on their own just from observing or experimenting.

The silver lining is that when Hope does tuck a new skill in her belt it makes me sooooo proud partly because I know how many challenges she has overcome to achieve it and partly because often I/we (Bryan, extended family or friends) have worked darn hard to help her get there.  And of course when Arthur achieves something all on his own I just think he's amazing even if he's totally on a par with other kids! Am pretty blessed with the order of things I think, it makes me think both my kids are brilliant :)

This year I have tried to stress less about Hope's milestones mostly because simply getting through the day with a 1 year old and a 2 year old is enough of challenge, but also because I suppose I have realised that she will get there and it's not some crazy race to the finish. I always did love the Tortoise and the Hare story!  

I do have to admit to being a bit worried about that whole early development (catch them in their early years and give it all you've got) thing and worry about whether I am losing ground for Hope by relaxing this year especially as she hasn't been to playschool yet but at the same time it has been good to be home together with both kids, they seem happy, Hope is not being pressured and I feel that she is maturing so she will be better equipped emotionally to look forward to playschool instead of feeling daunted by it.  Well that's what I'm telling myself. 

I have much to pray about for my little girl's schooling and development! I am also so grateful for family and friends who have stepped in to give us breather's and lifted some of the stress off by coming to play with Hope in constructive and educational ways ...it really does make such a difference, I can't imagine doing this alone!

As I write this I think about running the race that leads to the ultimate prize and I think my prayer for Hope is that she runs in such a way that she finds her purpose in life, that she achieves the goals she needs to be able to fulfil her purpose / purposes, that she knows her Father in heaven from an early age and that she is the type of runner who will stop to help others along the way. I guess our role as parents is just to lift these things up in prayer so she can win that prize!

Hebrews 12:1-3

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, 2 fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God.3 Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.

When do Down syndrome children meet their milestones?

Q: When do Down syndrome children meet their developmental milestones?
A: Down syndrome children will meet all the same milestones as other children but on their one timetable due to various challenges associated with Down syndrome such as low muscle tone, heart conditions, hearing and vision problems, cognitive development etc.

GROSS MOTOR SKILLS
ACTIVITY	CHILDREN WITH DOWN SYNDROME		TYPICALLY DEVELOPING CHILDREN
	AVERAGE AGE	RANGE	AVERAGE AGE	RANGE
Balances head and holds it steady when swayed	5m	3m to 8.5m
Rolls from side to back	5m	3m to 9m
Rolls from stomach to back	6m	5m to 12m
Supports body on arms, lifts head and chest when lying on stomach	6m	3m to 10m
Reaches one arm forward when lying on stomach	6m	5m to 10m
Sits with support	7m	5m to 9m
Hand to foot play	7m	4m to 10m
Rolls from back to stomach	7m	5m to 9m
Rolls over	8m	4m to 12m	5m	2m to 10m
Moves around his/her own axis while sitting on floor	8m	5m to 13m
Sits while supported by own arms	8m	5m to 15m
Sits in high chair	9m	6m to 15m
Sits without support for one minute or more	9m	6m to 16m	7m	5m to 9m
Crawls	14m	9m to 19m
Sits steadily for 10 minutes or more and is well balanced	11m	8.5m to 15.5m
Changes from sitting to standing position	13m	8m to 17m
Crawls with stomach lifted from the floor	14m	10m to 20m
Pulls to stand using furniture	15m	8m to 26m	8m	7m to 12m
Walks with support	16m	6m to 30m	10m	7m to 12m
Stands alone	18m	12m to 38m	11m	9m to 16m
Climbs up a flight of stairs	20m	12m to 28m
Walks 10 feet with a push toy	22m	16m to 30m
Walks alone	23m	13m to 48m	12m	9m to 17m
Walks up stairs with help	30m	20m to 48m	17m	12m to 24m
Walks downstairs with help	36m	24m to 60m+	17m	13m to 24m
Runs	around 4 years
Walks up stairs holding the rail alternating feet	56m	(40m to 66m)
Jumps on the spot	4 to 5 years
Rides a tricycle 15 feet	61m	(50m to 72m)
Walks down stairs holding the rail alternating feet	81m (21m)	(60m to 96m)
PERSONAL SOCIAL/ SELF HELP
ACTIVITY	CHILDREN WITH DOWN SYNDROME		TYPICALLY DEVELOPING CHILDREN
	AVERAGE AGE	RANGE	AVERAGE AGE	RANGE
Smiles when touched and talked to	2m	1.5 to 4m	1m	1m to 2m
Smiles spontaneously	3m	2m to 6m	2m	1.5m to 5m
Recognises mother/father	3.5m	3m to 6m	2m	1m to 5m
Approaches image in mirror	6.5m	4m to 10m
Takes solids well	8m	5m to 18m	7m	4m to 12m
Feeds self with biscuit	10m	6m to 14m	5m	4m to 10m
Plays pat-a-cake, peep-bo games	11m	9m to 16m	8m	5m to 13m
Holds up arms and legs when getting dressed and undressed	15m	12m to 20m
Drinks from a cup	20m	12m to 30m	12m	9m to 17m
Uses spoon or fork	20m	12m to 36m	13m	8m to 20m
Urine control during the day	36m	18m to 50m+	24m	14m to 36m
Plays social/interacting games	3.5 to 4.5 years
Bowel control	36m	20m to 60m+	24m	16m to 48m
Dresses self partially (not buttons/laces)	4 to 5 years
Uses toilet or potty without help (using a special step)	4 to 5 years
FINE MOTOR AND ADAPTIVE
ACTIVITY	CHILDREN WITH DOWN SYNDROME		TYPICALLY DEVELOPING CHILDREN
	AVERAGE AGE	RANGE	AVERAGE AGE	RANGE
Follows object with eyes, in circle	3m	1.5m to 6m	1.5m	1m to 3m
Grasps dangling ring	6m	4m to 11m	4m	2m to 6m
Removes towel from eyes (during play)	8m	5m to 13m
Looks for an object which disappears out of view	8m	5m to 13m
Lets go of one object in order to pick up another	8m	5m to 11m
Passes object from hand to hand	8m	6m to 12m	5.5m	4m to 8m
Imitates movements	11m	8 to 17m
Shakes rattle to make a sound	11m	8 to 17m
Pulls string to attain toy	11.5m	7m to 17m	7m	5m to 10m
Picks up object from a box	12m	9m to 17m
Finds objects hidden under cloth	13m	9m to 21m	8m	6m to 12m
Uses index finger to explore objects	13m	8m to 22m
Claps hands	13m	9m to 18m
Opens box to find a toy	14m	11m to 17m
Rolls/catches ball	14m	10m to 19m
Makes marks on paper with crayon	14m	10m to 27m
Attempts to imitate a scribble	15.5m	10m to 21m
Puts cube in cup	16.5m	10m to 24m
Puts 3 or more objects into cup or box	19m	12m to 34m	12m	9m to 18m
Picks up an object size of a currant using thumb and forefinger only	20m	12m to 36m
Builds a tower of two 1” cubes	20m	14m to 32m	14m	10m to 19m
Puts a peg in pegboard two or more times	23m	17m to 36m
COMMUNICATION ACTIVITIES
ACTIVITY	CHILDREN WITH DOWN SYNDROME		TYPICALLY DEVELOPING CHILDREN
	AVERAGE AGE	RANGE	AVERAGE AGE	RANGE
Reacts to sounds	1m	0.5m to 1.5m		0 to 1m
Vocalises to smile and talk	4m	1.5m to 8.5m
Shows satisfaction in social interaction	6m	5m to 9m
Gains attention by making sound variations (not crying)	7m	5m to 12m
Turns to sound of voice	6m	3m to 8m	4m	2m to 6m
Reacts appropriately to signal gestures (come up, look)	8m	6m to 13m
Say da-da, ma-ma	11m	7m to 18m	8m	5m to 14m
Performative communication	11m	8m to 18m
Imitates sound	11m	7m to 18m
Responds to familiar words	13m	10m to 18m	8m	5m to 14m
Responds to familiar words by gestures, etc.	13.5m	10m to 18m
Responds to ‘no’	14m	11m to 24m
Responds to simple verbal instructions	16m	12m to 24m	10m	6m to 14m
Points when requested to 3 body parts (eye, nose, mouth)	17m	13m to 25m
Jabbers expressively	18m	12m to 30m	12m	9m to 14m
Says first word(s)	18m	13m to 36m	14m	10m to 23m
Shows needs by gestures	22m	14m to 30m	14.5m	11m to 19m
Says 2 words	22m	15.5m to 30m
A few two word sentences	30m	18m to 60m+
Uses words spontaneously and to communicate	1.5 to 6 years