Back from the Mum's Retreat

Well I did it - left my babies and headed off to the mountains for a weekend. I missed them dreadfully but relaxing and chatting with the other mums was great! I'd highly recommend getting away like that for all mums but especially those of us with children with 'special needs'. I raced home refreshed to be given a fabulous greeting by my little brats. Hannah said "Mum Mum" in a very clear and strong voice - I have been told: 'No going away like that again!' I think.

As expected the twins and their father coped very well without me - although Phil did state how hard it must be for single parents - hats off to you! He took the kids on a picnic and as you can see in the attached pictures everyone had a ball.

Playgroup

Today was Hannah's playgroup. It is part of her early intervention programme. She has been enrolled since she was about 6 weeks old. When she was a baby the physiotherapist would come and visit us at home once a week. She'd show me how to lift and carry Hannah as well as some exercises to help her get strong enough to be able to hold her head up and so on.

Now Hannah is 19 months old we are working on her gross motor skills (walking and standing alone), fine motor skills (drawing and so on) and communication (expanding her signed and spoken vocabulary). There are two other children in her playgroup, one of whom also has Down Syndrome. She has been going to 'playgroup' since she was 4 months old. Each meeting used to go for 40 minutes but now we are there for at least an hour and a half.

Today there were two staff present (there are always two and often three) - Hannah's physiotherapist and her occupational therapist. The children sat in little seats in 'group corner' and sang songs. Each child has a turn at choosing what they will sing. Hannah chose the frog song and Kit chose Humpty Dumpty. Then they choose what games and activities they would like to do. Hannah played with some blocks, a quoits set, a jack in the box, plastic food bits and a telephone. She correctly identified actions being shown in pictures when presented with a choice of two. She also had a ball in the vestibulator - she loves that swing! They then played with some play dough - Hannah was concentrating very hard at putting in some 'candles' (toothpicks) into the playdough cake she made. Kit loved putting paddlepop sticks into a playdough cat he and I made. Then it is finally time for morning tea. Hannah is getting better at drinking with a straw. At the end of playgroup the children go back to group corner for story time which they all love - the physiotherapist ends up with all of them in her lap! We all sing the goodbye song and go home to play a bit more before lunch and sleep time.

That is Hannah's therapy every week - no hardship is it? We all have lots of fun. The twins grandmother comes too so that Kit has someone to play with when Hannah is busy doing a particular activity. Both children love going and are very familiar in the room and comfortable with the staff there.

I can't really express how very glad I am that such excellent early intervention is available for our family - I shudder to think of the neglect many children with down syndrome must have experienced in the past when institutionalisation was more common and people didn't recognise their amazing potential and the gifts they have to give to the community given half a chance.

Hannah and her 'baby'

Happiness
How lucky am I to be able to say 'happiness is ... leisure time spent with my husband and two little brats'? It is a sunny weekend without too many commitments but time to play together and be with each other.

Recently I met with a new mum - well it was her second child but her first with T21. I always enjoy talking and reading with other women who understand in a special way just what it is like to be a parent of a child with special needs. They know the sorrow and the joy - the intense feelings of love that these children can arouse in us every day and the wonderful sense of excitement we experience with each small achievement they make.

Afterwards I thought to myself - I hope I made it clear enough that raising Hannah brings me just as much joy as parenting Kit does. They are different children but they bring me the same amount of joys and concerns. Being their Mum is an absolute joy and privilege that I didn't always think I'd be able to experience. So yes I still feel sad that Hannah has Down Syndrome, I think I always will but in the scheme of things it is such a small part of the beautiful little girl that I am getting to know. My husband described the twins as books that we are reading but we can't skip ahead to see what happens in the end. Each chapter is a new development or a surprise for us. They dictate the narrative - we follow the plot that they set.

In two weeks I am going away (courtesy of a grant for carers) with other mums from Hannah's early intervention program. I am really looking forward to it but to be away from my babies for a whole weekend is a bit scary - they have changed our everyday lives forever and it will feel strange not to see them in the morning - to watch them play and vy for toys and attention. I must admit I feel a bit of a fraud - parenting Hannah is just part of my daily life so I don't know that it warrants this extra 'care' for me. Spending some time with other women in similar situations will be fun and there is going to be quite a bit of pampering involved - manicures, pedicures, facials etc. Utlimately this sort of respite is something that all mothers would benefit from - it is yet another wonderful part (or perk?) of parenting Hannah that you don't always see unless you are one of the families like ours.



Kit's signing and speech is really coming along. Here he is showing us where his nose is.







General Update:








Kit still has an ear infection - it seems to go and then comes back again. I am taking him back to the ENT on Friday so hopefully the ear will be clear so he can get a good look at what is happening in there! Hannah bear is loving her trike and pushing the weighted trolley we loaned from Lifestart. If she isn't walking by Christmas I will consider selling her on e-bay.

The Genius with an extra set of chromosomes

It is funny how often people are surprised to learn that Hannah has Down Syndrome. Often the only giveaway is when they ask about the age difference and I say that she is Kit's twin - his older sister in fact. This surprises people because she looks smaller, has a bit more of a baby face and is not walking at nearly 19 months (all factors which are not even a definite result of the T21 - they are fraternal twins after all).

I have had a Dr at the children's hospital ask if we had had her checked (did he really think that T21 is something you 'claim' your child has when they don't?).

Just this week I have had occassion to take the twins to two different GPs - one is Hannah's so he knows her history but still he was pleased (in a surprised sort of way) with how 'well' she is going. He commented on her definite personality (she was grumpy because she couldn't lift up the scales in his office)and the fact that she is getting stronger in the legs. He seemed surprised when she was able to communicate with him quite clearly. It won't be too long before he is able to say 'Down Syndrome' rather than mumbling about her 'problem' - she is teaching him well.

Then on Monday and again this afternoon a GP I have been taking Kit to for his ear infection also commented on how good she was - very responsive and animated - he gave Kit a jelly bean but was a bit worried that Hannah would choke on it - imagine his face when she chewed it with delight and midway through in a very clear voice and with sign to accomapny for emphasis said "MORE". Well heaven help my babies when I am ringside at their future sporting events - I was so proud of her. Both babies happily waved 'bye' as they finished off their jelly beans. The GP was impressed with how close she was to Kit in her responsiveness.

Mostly I take great pride in the fact that doctors are so impressed with her capabilities - yes I know that she is very clever. Another part of me wonders though at how outdated their understanding of what my Hannah is capable of must be. At least she is doing her best to be an ambassador for her 'people'. It is with pleasure in her abilities and her lovely nature that I let people know she has T21 - I want to break down as many barriers for her as I can and so many of them seem to be rooted in people's misconceptions and negative stereotypes. Her reality and what she brings to our family and the wider community is so much more than that.

Kit

This shows Kit's wild side. When you are pregnant it seems as if the babies you carry are blank slates, perfect children - they can be anything you want them to be. Both my twins quickly showed me that they were their own people - and I love it. One of the great joys of parenting is the challenge that this brings. These little ones are in my care and I can shape them by the way I nurture them and the environment I provide for them but they are also beings in their own right with their own natures and they shape me as much as I do them. Kit's fiery nature was a bit of a surprise and it can make him a challenge but I would not change him for all the world. I hope he always has that fire in the belly - that he won't suffer fools gladly. And I also am very grateful for his gentle and compassionate side - yes I can see that it is there already - part of who he is. I am so blessed to have him as my son.



I love this one. It is in the afternoon and the twins and I are just playing. Kit loves accessories and music - here he has his treasured 'manbag' and is about to select a CD to dance to.


This was taken when the twins and I were picnicking last year. I like it because it shows his sense of fun and wonder. My 'little brown mouse' has beautiful eyes.



Kit loves animals - especially dogs, cats and birds. At the moment one of the cats from our street has started hanging around. Kit absolutely loves him. Perhaps this obsession started here?


For the first couple of weeks this little fellow barely opened his eyes. Who would have believed that the 'placid' baby who slept a lot would become the energetic, strongwilled toddler he is today? This photo shows the change as it was starting to happen.