One thing that seems quite common among some parents of SN children that I have spoken to is that we like to live in a bubble. For me our bubble has become a very important part in leading a ‘normal’ life. When you have a child with special needs there has to be some level of acceptance to be able to carry on with life which is where the bubble comes in to it. I suppose the bubble is like a protective shield, a place to hide that is happy and ‘normal.’
Living in a bubble is defined as a place to live sheltered from the outside world, which is exactly what we use it for. In the outside world 2 years olds walk and talk, in our bubble they don’t. In the outside world 2 years olds feed themselfs and are begining to potty train in our bubble they are not. When we are at home, just the 4 of us in our bubble we have a great life with Freddie. Most of the time hes a pretty happy little boy, he enjoys toys that spin & he loves to hit at his ipad. Most of the time we are able to block out the fact that he is severely delayed in his development & the fact he doesn’t walk or talk isn’t really even noticed any more. We embrace Freddie for who he is as a person. We don’t dwell on the fact he has some kind of mystery syndrome and we love his quirky personality. Hes a very unique little boy who makes us very happy.
But the thing with bubbles is that they get burst very easily. Today was no exception. We had to take Freddie to hospital for an eeg scan. I have been quite anxious about this visit as i’m not sure theres a good outcome to the scan. I feel whatever the results we won’t get any good news. Freddie has been doing lots of new jerking movements lately which has left me quite concerned. If these new movements turn out to be epilepsy then it means more medicines to try to control them or if it turns out not to be epilepsy it means more tests & more of the unknown. This is hard enough to deal with but then seeing Freddie getting very cross & upset over having the probes glued to his head is pretty heartbreaking. Then he had to have his eyes held shut & bright lights shone in his face to see how he reacts. It wasn’t a nice experience for him or me. Freddie was a very unhappy little boy the whole time. The nurse was brilliant with him though but it was as if as soon as we walked into the hospital somebody got a great big pin and popped our lovely, happy bubble and forced us to step into the outside world. To look at our son sat headbanging in his chair with all the wires connected to him, to realise that actually this isn’t normal.
Our bubble does get popped alot. Theres been many times when we have just been out for a walk and i’ve seen a little boy run past me & ‘pop’ i’m out of my bubble and everything dawns on me…Freddie shouldn’t be in this pushchair, he should be running too. We went to the beach a few days ago for a walk, Evie was running and having fun and again ‘pop’ went the bubble. Freddie should be playing with his sister, they should be chasing each other or even arguing! I’d give anything for them to argue! For Freddie to take a toy off Evie and say “NO IT’S MINE!” to just hear his voice.
It would seem since having Freddie my whole outlook on life has changed. Things that never used to annoy me now make my blood boil. There are days when it’s impossible to be sheltered from the outside world. Social media has a big part to play in this. I don’t even have to leave my house to have our bubble popped. I’ve found since having Freddie everything in life has become so much more precious. Maybe in some ways i’m lucky to have had my eyes opened, to realise how precious things in life really are.
I can be sat having a cup of tea checking out facebook & see people moaning about ridiculous things such as how boring it is sitting in the park watching their children play! Seriously i’d do anything to watch Freddie play in the park. They have no idea how lucky they are. Another thing that never fails to pop my bubble is seeing people use such offence, horrible words such as retarded without any care or thought to what it actually means & who it may offend. A retard is defined as a person with a mental deficiency… Freddie is classed as having severe mental deficiency…
It’s time likes this where i’m so glad that I can go back into our bubble and appeciate our life. We may have a very hard time with Freddie but at least we don’t take life for granted anymore and are not shameful enough to use derogatory terms.
I’m sure I hope over the years our bubble may get a bit thicker and pop a bit less easy. But for now i’m still getting used to dusting myself off and scurrying back into the bubble everytime it bursts, back to our own ‘normal’ world(With a nice glass of wine waiting inside it for me!)
When Freddie was 8 weeks old he was diagnosed with having a milk protein intolerance & all diary products were banned. Yesterday we began trying to wean him back on to dairy products to see if he has outgrown this intolerance. I feel quite nervous over trying him on it again, the milk protein intolerance was where our real journey with Freddie began.
When Freddie was born we were told on the day of his birth that he had a syndrome. He spent a few days in scbu & he had a small operation at 1 week old. Whilst it was a hard time for us as a family we didn’t really realise the extent of Freddie problems. He was still a little baby & to us appeared relatively ‘normal.’ We weren’t convinced by the whole syndrome thing the doctors spoke about & when he began smiling at us at 6 weeks old i was pretty confident that they must of made a mistake.
The one thing we were having problems with was getting Freddie to feed. He didn’t seem to suck his bottle properly & would SCREAM after a mouthful. We spoke to our health visitor about it and she said it would just be a touch of colic. So we tried every colic medicine going. Nothing helped him at all. I began to dread feeding him as he became so distressed and upset.
We went through 8 weeks of this, several times we discussed how bad Freddie was feeding with our health visitor but everytime she was sure it was colic. Then one day I changed his nappy & his poo was mixed with blood. We headed straight down to the gp who then sent us straight to a&e.
This was when the milk protein intolerance was diagnosed. They were also very worried about how low his weight was & how poor he was feeding. He was seen by many different feeding specialists & tried on many different types of teats but he just wouldn’t feed enough to survive. This was when we made the hard decision to begin using an ng feeding tube. Originally it was only meant to be used for a few days just to get his weight up but 2 years & 2 ops later we still very much rely on Freddies feeding tube.
The trip to a&e turned into week after week spent on the childrens ward & trips in ambulances to other hospitals. This was when we got our wake up call with Freddie, where our normal changed. Reflux, atrial heart defect, stridor, trachel tug, microcephaly, micrognathia, high arched palette…some of the many problems bought to light during our stay. It was a very hard & scary time for us as a family.
Now 2 years on we are ready to begin weaning Freddie back on to diary. The plan is to start slowly, first week just a teaspoon of yoghurt everyday then gradually increase in the hope that his body will tolerate it.
Day 1 Freddie was a bit unsure of the yoghurt!
Day 2 he seemed alot more happy with it
Hopefully this time our journey with diary products will be a bit more straight forward & won’t result in any hospital stays.
You can read more about the different types of feeding tubes Freddies had here https://swanfreddie.wordpress.com/2012/03/24/tubes/
On Sunday we attended the 1st Swan fun day. It was held at Thames Valley Adventure Playground which is a center for children and adults with all types of special needs.
For just over a year now Swan UK has been our main source of support with Freddie. I’ve said before on my blog how much being part of swan means to me so when we had the chance to go to the 1st swan fun day I was very excited to be able to attend & finally meet some of the lovely parents I speak to on a daily basis and be able to see all the fantastic swan children who I hear so much about.
The fun day turned out to be a great. Freddie was in a very friendly mood & was very happy sat in his chair waving at people. Evie enjoyed all the activities available to her & had a good play with some of the other swan siblings. It was so nice to be around people who understand you & be able to talk so openly about your child. To not feel out of place doing tube feeding or by having a child who doesn’t walk or talk.
Time went very fast & unfortunately I didn’t get chance to speak to everyone properly but I did have some lovely conversations with lots of the families. I was so excited to finally be able to meet in person some of the swan mummies who I have been speaking to for over a year who have offered me so much advice & who have always been there when I needed them.
I sat & discussed all things swan related with a lovely family over lunch. It was so nice to be able to have a conversation where both families are on similar journeys. I also had discussions with families about equipment & respite, things that are hard to talk to other people about but something that was so natural to discuss with swan families. Everything was so relaxed & it was nice to just be able to be yourself & fit in. To not feel the odd one out.
One of the highlights on my day was being able to try Freddie on one of the fantastic Tomcat Trikes. Freddie was a little bit sleepy & very hot so there were a few tears on it but we are very excited to hopefully be able to get Freddie one of these trikes to use at home.
Seeing lots of the other swans on their trikes was a lovely experience too. The trikes are amazing and give so many disabled children who may not be able to have a standard shop bought bike the chance to have their very own custom made bike. Something every child deserves the chance to have.
Overall we had a fantastic day & we are very grateful to Swan UK for organizing it & giving Freddie the chance to meet some of his fellow swan friends, for giving me & my husband the chance to talk to other families who understand us & giving Evie the chance to just have fun with all the other siblings. We left the playground all feel very happy & lucky to be part of a great group. Already looking forward to the next Swan UK meet.
On Saturday we had a nice morning out as family. We did some shopping & went out for some lunch. When we came home the mood was ruined slightly. While we were gone the post had been delivered & there was a letter from Freddies health visitor.
At the top of the letter written in big bold letters was 2 year development review.
My heart did sink a bit. Did our health visitor really think it was appropriate to invite the parents of a child with severe global developmental delays to a review on his development. To compare him to an average 2 year old. It did get worse when I looked at the leaflet that came with the letter to find it was full of things that a typical 2 year old should be doing at this age. Some of the words that jumped out at me were
Able to climb stairs
Beginning toilet training
All things that I’m well aware that most 2 year olds are able to do. All things that for Freddie are a long way of. All things that I really don’t want to be reminded that Freddie can’t do.
As the parent of a child with developmental delays living with your head slightly buried in the sand works well. Developmental milestones have to be forgotten if we are ever to appreciate Freddie for who he is. Hes unique, hes funny, hes HAPPY.
While the head in the sand technique works well most of the time, receiving a letter like this is like someone pulling your out of that sand & saying “LOOK! Actually this is what he should be doing, of course he should be walking hes 2!” It’s a letter that wasn’t needed. And while i’m sure it wasn’t sent to us meaning to cause any harm or offence, it unfortunately has.
I assume it’s a standard letter that’s sent out to every 2 year old, but I feel there should be something on the administrative systems that stops letters like this being sent out to children who are seen by a paediatrician for their development, for children who are too delayed to need this review. I am going to cancel this appointment as for Freddie it will be pointless, Freddie is along way off being a typical 2 year old.
We are happy to celebrate the small steps and not compare him to other 2 year olds. Seeing Freddies speech & language therapist & being overjoyed to be told that he seems more alert or seeing his diatician & seeing how well his feeding is coming along. These are the important steps for us. Freddie is no typical 2 year old. He is who he is, a unique little boy. He will develop at his own pace, one day he may walk or he may never. But as his mum I will be there every step of the way to shout & cheer for what he can do & not to sit through a development review feeling sad at what he can’t do.
Sometimes I wonder what life would be like if you were able to walk and run
To use your legs as intended and just have lots of fun
Sometimes I wonder what life would be like if your hands would work as they should
To play and explore just like all the other children, I really wish you could
Sometimes I wonder what life would be like if you could give me a hug and a kiss
It’s something that I long for and for which, would just be bliss
Sometimes I wonder what life would be like to hear you call me mum
To hear the sound of your voice instead of just a hum
Sometimes I wonder what life would be like for you and your sister to fight
It’s not something many parents would wish for, but to me it would be a delight
Sometimes I wonder what life would be like if you were able to meet your own needs
To be able to drink from a cup and attend to your own feeds
Sometimes I wonder what life would be like if your body was how it should be
If this cruel syndrome just went away and you were now free
Sometimes I wonder what life would be like to not look at you and feel grief
For this to all just be a dream that would be such a relief
Sometimes I wonder what life would be like but what ifs won’t make it right
For now we carry on with life and make the most of this plight.
We had been waiting for a few months for Freddies r82 panda chair to be delivered & it finally came last week.
Freddie is able to sit unaided but needs constant supervision when doing so. His danger awareness is very low so is more than happy to just throw himself backwards from sitting & hit his head on the floor. This was making it very hard for me to do any jobs when Freddie was awake such as making lunch or preparing Freddies meds. Freddie also sits with his back very curved so the chair is needed to help maintain a good posture for Freddie. The chair is on wheels which will allow me to get Freddie around the house without me having to carry him & stop me damaging my back.
I am so pleased with the chair it is fantastic! It has made life alot easier. The height is adjustable, the chair can be tilted backwards & it has a play tray.I have always struggled with being able to cook a decent family meal as it was too hard to juggle cooking & ensuring Fredie was safe but thanks to the chair I was able to cook the first Sunday dinner we have had in a long time. I have made cakes with Evie while Freddie sat in his chair watching us, I’ve sat & had a cup of tea while Freddie was sat safely playing in his chair, I’m now able wash up & tidy the kitchen while Freddie is sat happy & content in the kitchen with me, it really has made life alot easier. Simple tasks that were made so much harder while caring for Freddie have now become more doable.
I’ve heard so many families struggle to get appropraite equipment for their children but it really is so important. Not only to help the child develop & be comfortable but to help the parents. Our new chair has given us a little bit of normality back & has taken some of our stresses away.