We hadn’t told many people about the potential diagnosis. We were first time parents and were trying to get our heads about becoming parents never mind the extra stress of a diagnosis of ds.
When we got home we opted not to tell people about the diagnosis — we had to get our heads round it and we wanted people to get to know Ella for who she was/is. We didn’t want the sympathy we knew so many people would give.
Care of Ella had been discharged into the care of the community with the exception of her heart. There was a minor hole which was to be and still is monitored.
Ella is under the care of a great paed. She is straight talking and to the point which is what I really like. Physio and OT has been going very well while there were a few hiccups with SaLT but these things are to be expected and as long as we have the basics we can work with Ella.
Despite the negative comments towards breast feeding I decided it was something I really wanted to stick with and did successfully until Ella self weaned at 14 months. I went to the local support group when I met the most wonderful mummies. The group was on fortnightly and 10 of us soon became firm friends and still are now. The support we received and still do from these ladies got us through a lot. The lunches after “boob group” turned to evenings out where perhaps the odd glass was consumed and the daddies were left at home with the kids.
Some of these ladies have become a big part of our lives and Ella is treated the same as their kids which is exactly what we wanted. While looking way into the future is still something we don’t do we know and are confident not only have we made lifelong friends but so has Ella.
I took Ella to parent and toddler groups, baby massage and sing and sign. Have to say the massage was great for us both. Ella enjoyed the sessions and I got to know her much better, what she liked and didn’t like and the extra work on her muscles was great.
The sing and sign was a fun way for me to learn a lot of the basic signs and while Ella has only recently started to sign I firmly believe the repetition of me knowing and doing the signs was of great benefit.
Ella started a private nursery when she was 7 mths old — just going 2 mornings a week. She loved it. The interaction with other kids, being fussed over it was great. As we all know kids with ds are visual learners and she copied so much.
Slowly we started to tell more people and as we suspected some gave us the pat on the arm and if I heard the comment “but they are such happy children” once more I would not have been responsible for my actions but as time went on I either had retaliation or simply ignored the comment.
We both knew some mummies that got very emotional on the run up to their kids 1st birthdays but I have to say we were delighted with the progress all 3 of us had made. We had a party, the weather was great and both adults and kids had a great day.
Coming next 12-24 months.