we visited Freddie’s nursery for the first time. Not to scout it for nursery purposes but because one of Freddie’s nurses had suggested we make contact because they would be able to offer support into the new SEN world we were now moving into and help me with the dreaded Disability Living Allowance paperwork. So I phoned them and off we went.
I felt extremely overwhelmed from the moment we arrived. As we were greeted I just remember looking at the children and thinking how different it seemed compared to the Montessori nursery we had already signed Freddie up to before we found out about Mito. It seemed chaotic, and I HATED chaotic! There were pieces of equipment I’d never seen. I didn’t know what to say or think. I was scared of starting journey, it’s not like we’d chosen it.
When we meet met the lady who ran it she explained that this was not their normal nursery because, during the summer holidays, they offer respite sessions instead. She said this is because some parents need a break whilst others spend time with their other children – perhaps they go out for days that would otherwise prove difficult.
Whilst she was talking I remember being shocked and horrified. I even cried on the way home. I couldn’t believe parents would choose to leave their children in the school holidays instead of spend time with them. It made me so unbelievably sad. Freddie was 10 months old and I couldn’t image leaving him there. I was his Mum, he should be with me. As for choosing to spend time with their other children, well that ruined me! I felt as though the child with additional needs was being neglected, that they were a hassle so it was easier for someone else to have them. It broke my heart.
Fast forward two years and Freddie attends ‘summer nursery’ and I see things a little differently. Freddie isn’t a hassle to me, he’s my son and I love him dearly! He has a very full life and not a week goes by where I don’t take him out, whether it be to local library or further afield for a day trip. In fact we’re out most days. James and I do our best to make sure he has lovely experiences. However, the reality is that it’s hard (it’s really bloody hard) looking after a SEN child 24/7 without any break. I feel guilty even typing that. I don’t even mean Freddie is hard work, he’s an absolute joy. Never have I encountered a happier, more easy going, toddler in my life. I love his company. I’d pick him every time.
The things that make our life harder are medications, feeding schedules and the fact (bless him) Freddie is physically very limited. Basically everything that comes with Freddie, well comes as part and parcel of the disease really. Our days have time restrictions because of pump feeds and medication schedules. It doesn’t stop us from going out but it’s either time limited, or if we’ll be out over a feed, it means we come with a lot more baggage. So I have more to pack and think about before we can leave the house.
On top of that Freddie can’t even transfer which makes trying to ‘pop’ out to pick up medication from the GP surgery or get some milk quite a mission. I either need to get his wheelchair out (which will usually take longer than the actual errand in question) or I just carrying him which is heavy work and I’m not sure how much longer my back will be able to comply. Essentially Freddie is an (almost) three year old newborn. He doesn’t hold his own weight whatsoever and he is much bigger than a newborn.
Being able to use the summer nursery sessions just gives me a little bit of a break and gives me some time to run errands or complete chores without Freddie in tow. To be honest, I see it as best for both of us because he gets a lovely day having fun with one to one attention and doesn’t have to be dragged to the shops, doctors or watch me do washing. I’m pretty certain he would rather be at nursery than with me.
I’m learning so much on this journey as a SEN parent and I will continue to learn. My little family has come so far in the two years we have been thrust into this world. It’s scary and it’s not the life you dreamed of but you can make it work.
