Maisie is 7! Where has the time gone, every year on her birthday I reflect on how I felt when she was born, I wish I knew then what I know now, hindsight is a wonderful thing.

The first 6 weeks of Maisie’s life were a blur, a massive mix of emotions and I really wish I hadn’t of spent that time worried and upset.

Yes, it’s ok to feel those things but at the time I couldn’t feel anything positive about Down syndrome because we didn’t have a clue about it. We had our beautiful baby girl, I loved being a mam straight away, but it was such a scary time because of the unknown. When Maisie was 4 months old I started to access LD:NorthEast Early Years Project which is funded by Children In Need. Straight away I felt like I belonged, a warm reassuring welcome was waiting for us. The peer support was exactly what I never knew I needed, talking through my situation with other parents and realising that my mixed emotions were the same for everyone and getting reassurances from the Early Years Lead was a life saver. Maisie attended all the free sessions at LD:NorthEast until she was 5 years old and has made lots of friends. Interactive play and not being judged or having to explain Maisie to people who do not understand meant I could relax and enjoy the sessions. I wasn’t alone!

Is having a child with a disability hard? Definitely, but being a parent to any child can be hard.

Do we face more challenges than most parents and does Maisie face more challenges than a lot of her peers? Absolutely and we will probably continue to do so.

Do we have to fight for things and have endless forms to fill in to prove that she isn’t the same as a typical child, even though this will be the case forever? Yes, but down syndrome makes Maisie who she is and we will keep fighting for what she needs.

Maisie knew over 200 signs before she started school thanks to LD:NorthEast, she was able to communicate her wishes in her way. Maisie is a very happy little girl!

This isn’t a ‘Down syndrome is great and my child can achieve anything she wants’ blog because we know that a lot of families have to live with different and harder behaviour/learning issues/delays and complex medical issues that can come with Down Syndrome and any disability and thankfully we haven’t had much experience with that. It isn’t all smiles, and laughter and the reality is this will be an uphill battle to get the best support we can for her, it can be exhausting.

Looking back to those few weeks when she was born and being sent home from hospital with this beautiful little bundle, I was so scared and yes negative with all the stereotypical thoughts. I really wish I had been more educated on the positives because there are so many of them.

Thank you to LD:NorthEast for making me feel we have a family for life , I know they will support Maisie and my family throughout Maisie’s life and they will be there to help me navigate through her journey and for this we are very grateful. We are very grateful to Children In Need for supporting this much needed project who give this emotional, peer and professional support to hundreds of children that have accessed the sessions these past years.

 

By Sam Coates, Maisie’s very proud mum.