Having a strong support system is crucial in life, and we’ve found it even more so with Hope. The support has been so important from the moment we learnt that Hope would potentially have Down syndrome and will continue to be important as Hope continues to grow. Our support system doesn’t just include those who are there for us, it includes everyone who is there for Hope, helping her grow and learn. Making sure we have the right people in our support system is essential for Hope’s success. As you know, Hope faces developmental and medical challenges, so our support system needs to include those who can help address these things and provide necessary resources to help us through these times. It includes family, friends, doctors, therapists and also you, the wider community. I want to talk a little bit about the support system around Hope and how everyone works together with one goal… to give Hope the best life possible and ensure she reaches her full potential.

Family Support

More than anything, Hope needs the support of her parents. If she is not supported and encouraged by us, she will never succeed. Family plays a vital role in her life. We’re the first ones who can provide her with a sense of love, security and stability. We’re the ones who see her through everything, the ups and downs, the good and the bad. We are here to support her with her daily activities and a huge part of what we do is advocate for her needs, especially while she is young and unable to speak for herself.

Then there are her brothers. As they grow older, they will of course, do all that we do as but right now, they have a special place in her life. They’re the ones that she watches day in, day out to see how she should behave. They’re going to be the ones in the school playground, watching out for her, making sure she is loved and looked after. They’re the ones that Hope will look up to . I think about the poem I wrote a couple of months ago, “Just Like Them”, explaining how she wants to do everything they are doing. This never stops, she’s always going to want to be just like them so their support is extremely important for her.

As a family, we obviously help to create an environment at home where she feels safe, and where she can grow and develop. We will help her build her self-esteem by cheering her on and celebrating all the little things.  We can support her in her quest for independence and help her find her place in the community.

Extended Family & Friends

The family support doesn’t stop at us. There’s also the support from extended family and friends. We have a great number of family members and friends who support Hope 100% and would do anything for her. Even those that live miles away, are constantly encouraging her and wanting to see her do well. We’ve got close friends that get excited to hear about the improvements Hope’s making and like the rest of us, cheer and encourage her every stop of the way.

The support of Hope’s own friends is going to become more and more important as Hope gets older. At the age of three, kids generally don’t see the “difference” in Hope. They are completely accepting of it but as she grows, we know this is going to change. As she grows, Hopes close friends are going to be a great support in both the physical and emotional. We hear stories of how the kids already support her at school. She has friends that will help her when she is having trouble. If she’s upset, we know they are there to give her cuddles. It’s only little things at the moment, but it’s the start of something bigger.

As she gets older her friends are going to be able to provide opportunities for Hope to be social and support her in her socialising, helping her feel included and a part of the community. They will help to advocate for her and encourage acceptance. I would imagine as kids get older, they would be more likely to respond to their peers talking about acceptance, than the adults. It’s surprising sometimes, how much of an influence peers can be. As I mentioned though, these are things that will come later, they’re not happening just yet, but I imagine this support from friends is going to be huge for Hope as she grows and will also help to support us as parents.

Professional Support

Hope’s support system doesn’t end with just friends and family. It is SO much bigger. There’s doctors, therapists and educators and while it may seem obvious to consider them support, I sometimes wonder if they realise just how big a support they are.

Doctors

Let’s start with doctors. They obviously play a huge role in terms of medical support and monitoring, and we know Hope has needed a lot of that in her first 3 ½ years of life. We’ve seen many specialists who have helped support Hope and some of those we no longer have to see. However, our ongoing support includes a GP, Paediatrician, ENT and a Cardiologist. Each of these doctors and specialists support Hope in her health. Our GP (and the medical practice) has been a huge support to Hope. They’ve squeezed us in at the last minute when we’ve had to have Hope seen quickly. They always make sure to ask about Hope; even when she’s not with us, and our appointments aren’t related to her. They will follow up after she’s been unwell to make sure she is recovering. Perhaps this is normal GP behaviour, I don’t know, but knowing that we have this support is extremely helpful to us. When she’s been sick, and we are exhausted, we know someone is still checking in and is there to tell us if we need to worry (or not worry).

Therapists

I feel like I could write an entire blog on our therapists and how much of a support they are to Hope. Without them, Hope would be progressing as well as she is. Hope has 2 speech therapists, a physiotherapist, an occupational therapist and a dietitian. We see each of them on a regular basis and their support goes far beyond the 1 hour session each week. Hope’s therapists spend countless hours planning sessions and making sure they know what Hope needs. They let us know what equipment is needed to help us continue the hard work at home. They have visited the daycare to support the educators and help them understand what they can be doing to help Hope while she is there and they have even advocated for Hope when reports from other specialists have been less then favourable. It’s possible as Hope gets older, some therapists may change, we may need more therapists. The thing is there are so many different specialties and depending on the support Hope needs, the therapies may change. Hope may require less of a therapy one day, and we may find we need to begin to see a behavioural therapist or perhaps begin some music therapy. No matter what happens, we know Hope has the support of her current team and they will provide anything that is required to guarantee Hope continues to progress and succeed.

Educators

Hope has been in daycare since she was about 9 months old… I think. Maybe it was 12 months. From day 1 they have been nothing but supportive of her. They implemented new day to day routines to keep Hope safe, they purchased new equipment to make sure Hope had support and care all day long. Hope’s educators have created an inclusive classroom environment where Hope is just like everyone else. They provide opportunities for Hope to socialise and encourage this every day. They share little snippets of the everyday activities with us and it’s so amazing to see Hope joining in and playing with her peers and also all the educators playing their part. They’ve allowed therapists into their rooms to share with them showing just how much they want to see Hope improve and supportive of the work needed to get her where she needs to be.

Swimming Instructor

I wouldn’t feel right writing this blog without adding Hope’s swimming instructor. The support Hope receives in her swimming will also help with her gross motor skills, and while swimming lessons may not seem, to some, like such a necessity, we consider it just as important as her therapies. Hope’s swimming instructor is a true supporter of Hope in her development but she’s also just been a huge support to us in coping with everything when things have been hard. She’s called while Hope has been unwell to check on how Hope is doing, and also to check in to make sure we are coping ok. She’s one of our biggest supporters of Raising Hope Designs and continues to share Hope’s story and sends people our way.

Community Support

Finally, we come to you, the community. While you may not know it, you, as supporters of Raising Hope Designs, are showing a huge support for Hope. You are showing her that she belongs, you are supporting Hope and us in our fight to make sure she is accepted everywhere she goes. Anytime you share anything about us, anytime you purchase a product, any time you like or comment on a post on Facebook. It’s showing support for Hope and makes you part of her support team.

And hopefully I haven’t forgotten anyone. As I said, at the beginning, having a strong support system is important, and Hope has a huge support system, one that we expect will just continue to grow, and we are so thankful for everyone and the role they play in ensuring Hope succeeds in life.