Sunday April 25, 2010

 Doesn't time fly!!

Samuel is nearly 1 year old now, but its hard to know where the last 12 months have gone.
At first Angie had planned to return to work after 6 months maternity leave, but after 3 months decided to take the extra 6 months unpaid off, (you get longer with pay now, trust us to miss it by 6 months) this was due to wanting to give Samuel the best start in life allowing him to be able to take advantage of all the help on offer to him. 


One of Samuel's digital hearing aids showing his current orange mould

Samuel has moderate/severe hearing loss, so this in itself required many appointments until he was given his two digital hearing aids in April. At first he was going every two weeks to have new ear moulds made as his ears were growing at a great rate making his hearing aids not seal properly resulting in them making a funny buzzing noise. Since July its now every 4-6 weeks for new ear moulds, this involves going to the Children's Assessment Centre in Canterbury and seeing the Audiologist on a Thursday. Some putty is syringed into Samuel's ears, it takes a minute to harden and is removed and sent off, 10 days later we receive a little box with his new moulds in, which you then trim the plastic tubing that's attached to the correct length and push on to the body of the hearing aid (the purple part). You can choose different mould colours, and so far we have had yellow, blue, purple and orange. We even had initially clear glittery ones with Mr Happy in!! The whole appointment only takes about 15 minutes.

Other activities we wanted Samuel to attend were baby massage, (out of the group of 8 mums, 5 of us still keep in touch and we meet up regularly - lots of birthday parties at the moment as all the children reach 1year old ) Post Natal group, Sing & Sign, Tumble Tots, and other local toddler groups.

How we feel

Having a child with Down Syndrome has its low points, meeting other children who are running around at the same age as Samuel, and sitting up where as Samuel is still only able to lay and roll around can be a little upsetting at times, but even 'normal' children are all different as well, but he will get there with love and patience. Some Mum's we meet wish their child would stay in one place instead of walking round the furniture and getting into things they shouldn't do, so maybe its not such a major disadvantage after all :->

You often see other children Samuel's age eating a sandwich or mashed up normal food, but Samuel is still on pureed food as he does not like any lumps, he is not a fussy eater, he particularly enjoys any vegetable mixtures that have some sweet potato or carrot in. We regularly cook a batch of vegetables and by using a £4 Tesco Value handblender (why pay £30 for a Braun one?) we puree the vegetables and this makes around 4 or 5 meals, which he really enjoys.



He also enjoys biscuits that he can hold and that go soggy in his mouth, an ultimate favourite of his are Wotsits.

As for his development he now attends speech therapy and tries to copy mouth movements and is starting to do some signing.

We have mentioned above one or two low points but honestly the highpoints far far out-weigh any of these. He truly is a delight, he has slept soundly since birth, he loves being part of things. You may have read in our site about the comments from family on learning that Samuel had Downs that we would not be able to do anything or go anywhere, but its quite the opposite in reality, we have never done so much. Samuel loves flying too and in his short life has been lucky enough to go to Spain twice! On both occasions other passengers have commented on how well he travels and makes not the slightest fuss.  He is outstanding with even total strangers noticing how good he is, and frequently on trips to the supermarket people come over and make a fuss of him. We have taken Samuel camping several times, this can be difficult for any child but he thoroughly enjoys the experience.
We really could not imagine life without our little boy, he is a pleasure to have around who brings joy and laughter to everyone he meets.

If anyone reading this has just been told that their child has Down Syndrome or there is a good chance of it, please keep positive, we know from experience it may seem like the end of world has come, be aware of the negative side, but focus on the positive side as in our experience the positives far outweigh the negatives. We know the initial shock and upset at learning that our child would be born with Downs, talking now from our experience of the past year, if we could have another just the same as Samuel we honestly would not hesitate!!