Through their blog posts we share in the lives of our Firefly Garden Special Needs Bloggers, we read about their experiences and hear their thoughts and views. In this series we interview our Special Needs Bloggers to find out a little bit more about the person and family behind the blog post.
Tell us a little bit about your family I live at home with my Mum, Dad and Aj. Danny, Aj’s Dad, is a royal marine so he’s away from home a lot. My Mum works at our local hospital, she’s a ward assistant on the orthopaedics ward. My dad works for himself as a fireplace fitter. Family life with Aj is a bit hectic, always go-go-go. Danny tries to come home at weekends although he struggles sometimes with fuel costs for the 600 mile round trip! I stay at home with Aj, he keeps me busy with appointments, therapies etc…
Why did you become a special needs blogger? I started writing blogs after I saw that one of my Facebook friends had written a few. I see it as a kind of ‘release’, I can write exactly what I’m thinking or how I’m feeling without feeling like I’m shoving my feelings and views in people’s faces, after all they don’t need to read my blogs unless they want too, right?
What are your hopes and dreams for the future? That’s a tough one…The future is something I really try not to think about. The thought of it scares me, the unknown… We are hoping to start looking for our own house soon, something suitable for us as a family and Aj’s needs (it’s getting hard lifting him in and out of the bath, and we have no room for a bath seat here!). The main thing I worry about Aj’s future is what kind of life will he have? Will he be happy? Will he have friends? Will he ever be understood by others? He starts part time at a special needs school in September, I’m hoping that will really help him! One day we would love to be able to take Aj on holiday to Disneyland. He loves rides - the feeling it gives him in his tummy makes him laugh. Our main hopes and dreams are just for Aj to live a happy life, to enjoy all he does and be accepted for who he is.
What’s the best thing about being a special needs mum? It’s rewarding. Seeing a little person, come so, so far. The courage and determination special needs children have is unreal. It’s taught me a LOT. I now have waaaay more patience than I did before Aj came along. Good things come to those who wait, right? So the longer it takes for him to do something, the more we can praise and enjoy it when he does! It’s also taught me live in the ‘now’ and not take one single day for granted. It’s changed me as a person as a whole, and I’d say that’s the best thing.
What do you do to relax? Relax? What does that mean? I find writing blog posts helps me relax, as I said previously, I see it as my release. Sometimes when my Mum isn’t working she will look after Aj so me and Danny can go out for tea or something, something ‘normal’.
Do you have a personal goal for the future? To be happy. Comfortable… Prior to Aj being born, I wanted to work with special needs children or on NICU (how ironic?!). I would still like to do that, although I think it would be too much when Aj is so young and everything is still so raw. If you could go anywhere in the world with Aj, where would it be? Disney or Panama. Aj would love Disney, but it would have to be in the quieter months as he would get so overwhelmed in the crowds! Panama would be for stem cell treatment, as I have read so many positive things about it! Shame we don’t have a never ending lot of money!
What’s been your highlight and low point of this year so far? Our highlight would probably be being told Aj had been offered a place at our local special needs school! He will start part time in September and I’m really hopeful that he will blossom whilst he’s there! Low point? Being told Aj’s feeding issues now mean he needs to have a gastrostomy feeding tube placed. This has been very confusing and scary for us all but I’m sure it’ll be a relief knowing we will be able to get fluids and calories into him when he’s not feeling himself.
If you could have any piece of equipment for Aj in the world what would it be? A fanlite, definitely! They have one of these where Aj goes for his therapy, he’ll miss it loads when he leaves there to starts school :( It’s a light in the shape of a rainbow and it slowly changes colours, I have never seen him as calm as he is in front of this light, he concentrates so much on following the lights and he stands really well whilst playing with it! It’s very expensive though, but we’re hoping to save for one in the future!
What would be your one piece of advice for new special needs parents? Relax! Honestly, I spent so much time worrying whilst Aj was a baby I forgot to actually enjoy him being so small. Our life’s revolved around what would happen next or what we could do to try and prevent it. When in reality, if something’s going to happen there isn’t very much you can do about it. What therapies would work best? What happens if that doesn’t work? Just go with it, acceptance is key. You can’t change the future, but you can change the way you handle it.
Thank you to Emily for her honest answers, if you would like to be a Firefly Garden Special Needs Blogger email us [email protected]
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