Twins – my life upside downs – a busy few weeks

The past few weeks have whizzed by and we seem to have crammed lots of great stuff in!

Jack started Digbies three weeks ago, we’ve had a couple of weeks of getting to know the team, other children and parents and today was the first group where we had a therapy session. Digbies is a service, that we pay a contribution towards, provided by PSDS and will give Jack and us support in three areas; occupational therapy, speech and language and social skills. The first week Jack and I went solo and Jessica spent the day with Richard. To make up for Jessica being dragged from pillar to post, Richard decided that weekend to take her on her first trip on a train, they headed to Gatwick airport to see some planes. Had lunch at Giraffe and went up and down on the monorail – with Jessica shouting “happy holidays” to everyone!

Jack also started his Portage support sessions too! This is where the lovely Laura comes to our house and he is learning by play with her. He has already come on in leaps and bounds – he now signs ‘more’ and ‘thank you’ on a constant basis.

The second week at Digbies; Richard took Jack and Jessica spent the day with her Nanny. It was more getting to know Jack sessions and Richard getting to know Digbies. Whilst I was mostly drinking alcohol with my friends, getting on a plane and jetted off to Benidorm! Three whole nights away… You may judge me for leaving my children or you may well be envious of me – it HAD to be done! This is going to be an annual theme (we went to Benners last year too), however, we all agreed that we have done Benners now and need to go somewhere with more culture, Magaluf was discussed – ha ha ha! On the coach ride back to the airport, on our way home, I was listening to some ladies discussing their children and starting senior school. One of the women was saying how she felt that her daughter doesn’t fit in and that she wasn’t really what would be termed as a ‘mainstream’ student. But that she had told her daughter that being different is good. That not everyone needs to be the same and how the world is made up of people being different. This made me smile, as I thought that I will use that with Jack as he grows up and so that Jessica knows it is great that we have Jack (who will never be classed as ‘mainstream’) and that not everyone, disability or no disability, fits in immediately – but there is a place for everyone in this world.

On his third week at Digbies we took Jessica along with Jack and I. Well, and I know I am biased beyond belief, but she was so so good! Played with all the children and didn’t kick up any fuss. Ate her lunch at the table with Jack and the other children. She came into Jack’s OT therapy session and she ‘helped’ Jack, so cute! Jack did really well with his session and we have been given some things to work on with him – which are hilarious as he just laughs when we do them! After Digbies we went to see the Morley’s and ended up going out for dinner – it was so nice to have all the kids round the table.

In-between all of the above Jack has his next hearing test. Now, I have never taken him to have this test, largely because I know that I would laugh, (my sister and I had to have hearing tests when growing up and I remember vividly laughing, with my mother, at Claire having such a test!). But this time Richard couldn’t take him so it was down to me. Jack was awesome and true to form I giggled through it! But the outcome is that his hearing is good and he doesn’t have to have another test for 6 months! Boom!

Also, Team Joggers for Jack completed the respective 10k, half marathon and 1 mile kids runs – we have raised over £1600 for PSDS (the Down Syndrome charity we belong to, who provide Digbies). So proud of the whole team. We’ve signed up a couple of the Banners girls to do 10k next year (it’s in writing now, Hels & Zo! Ha ha ha) and Lisa and I committed to attempting a half marathon next time round – eeekkk! Watch this space for how big Joggers for Jack becomes in 2018!

So, all was going well in Team Grover world, until today… back in August when Jack had his last developmental check, I asked that he get referred for Occupational Therapy and Speech and Language Therapy too. We got a letter informing us that Jack has ‘no functional issues’ and therefore does not fulfil OT referral criteria! I can’t believe it – he has Down Syndrome and is behind where the average 2 year old is developmentally, therefore why does he not fulfil the criteria to get support?! Surely, with early intervention and support, Jack can become the best he can be? Then another blow… Portage support will stop after half-term and we don’t know when we will get it back! I am feeling so deflated by these set backs, but determined to push to get the support Jack needs and deserves!

Pics to end on a high!



Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s