I’ve fought for Austin and Rory with every part of me since the day they were born, taking each and every challenge and facing it head on, never just accepting it, always looking to give them every chance at a fair and normal life.
When in the incubator, we would listen to everything that the Doctors and nurses said, but we would never just accept it, we researched and learned everything we could, so that we understood the machines and the numbers and therefore understood the boys progress throughout the day and then, when the ward round came, or the Doctor engaged in conversation, we had our own observations, our own questions and our own input to the boys care. The Doctors and Nurses had great respect for us because of our valued input and I strongly believe that we played a big part in getting them well and getting them home, especially in the final weeks when we just needed to wean off the oxygen. We pushed and pushed every day, monitored their oxygen levels and looked into other things that may have affected their oxygen saturations. We noticed they dipped their numbers around feed time for example, and after discussing this, we were given Gaviscon and Lanzoprozole in milk for the severe reflux that we both had, and we managed to maintain our oxygen saturations during feed. We set small, measurable targets that everyone had to work to, making the process more pro-active and structured, so they turned the oxygen level down one and then monitored them for 4 hours and how many dips they hadand then we were able to justify dropping it again, and again and I strongly believe we saved ourselves at least a fortnight in that process.
We have fought in so many different ways, for the boys to have every opportunity, pushed boundaries and norms, for example, taken them swimming, to the beach, to football sessions. We have made every single day about them and made sure they have been able to grasp every opportunity, whilst always managing the risks of course. And the situation has been such that 6 months of every year so far have been grim, stuck inside, no opportunities to take without risking our health and so outside of this, we have more than made up for it.
Developmentally, A&R were never going to be top of the class, and even as Teachers, we didn’t want that. We wanted two happy little boys and my god – that is what we have, and everyone always comments on how happy they are, and so we are winning with this, but I want two healthy boys too, something which I can’t control, but of course they are doing absolutely amazing compared to what was expected for them, and they are here and breathing, we must be grateful for that!
There are so many times that I am filled with guilt, that I failed them. I should have cooked them longer and kept them safe and then their life would have been completely different, and I don’t think I will ever lose that feeling, but actually, I know, there is not a person in this world that could challenge my fight for them since. I have given them everything and more, and as much as i’m blowing my own trumpet here, and I am far from perfect, I know that I am winging it and winging it well. I know I couldn’t have done any more for them and I know that I (& Ash obvs, but me in the most part) am responsible for those two happy little boys who have defied all odds. I put them first ALWAYS. I gave up my soul for two long winters, Sep – March to keep them safe from bugs. Ask anyone close to me how difficult that was for me, and they will tell you. For someone so indepdent, sociable, career-driven, to be stuck inside for 6 months at a time, no adult conversation, not even a trip to the bin to put the rubbish out and a chat with nxt door – it was hard going, but knowing how well my boys are now as a result of it, was worth every minute.
When I think more about what I want for Austin & Rory, aside from being happy & healthy, I just want them to be academic enough to get by (maths, literacy – the basics) but more importantly, I want them to be emotionally intelligent, good people, a valued member of society.
I’ve always assessed them and tracked them (its the teacher mum in me) and to be honest I think it was something that started during the first long winter stuck inside, I spent 12 hours a day entertaining them and I just thought, I might aswell make sure I am teaching them the right things, and buying the right toys to teach the right skills that they need at this age, and it has kind of gone from there.
At their first development check with health visitor, they had met all of their milestones and nobody had any concerns, and to be honest, as time went on and further development checks came and went, they always met everything they should have, until about the age of 2. We had been discharged by paediatricians and nobody had ever flagged any concerns, but I did notice, very clearly, the milestones they weren’t meeting were very obviously linked with their situational challenges, their speech and language delay as a result of this and of course Rory having his trachy. By this, I mean, they had experienced very little social interaction, mixed with other children, been to many different places, done messy play, swimming, baby massage (i could go on) because they were either poorly in hospital, not allowed out, or not able to do safely with Rory’s tube and also, being twins, Rory couldn’t make sound and so Austin thought he didn’t have to, and so the speech never came.
There were so many times I wondered if there was something else behind their development delay, their communication issues, even though I knew that it could all be linked to their experience of life so far, Autism was always something I kept in the back of my mind, for both boys. As an educator, you just can’t help it. Your mind is full of knowledge and you can’t help look at your children as additional pupils in your class, and you are always looking for these things as early intervention is of course, the best course of action.
We had very little input from services around us. We don’t see the Health Visitor or Community Nurse team, they know we are fine. They know we will be in touch if we need them. We referred to speech & language and the first lady observed and made a little laminated book for us which the boys still use now, Austin was discharged and we never saw that lady again, we saw another lady who observed Rory and then asked to come back and observe again in 3 months. She did. On her second visit, she said that on her first visit she had flagged up Autism in her mind, but this time she had scrapped that completely because Rory had made genuine eye contact and interacted with her, playing etc. She felt that he was just very much in the early days of communication and gave us some strategies to support him with eye contact and communication exchange like two way games. I explained that I had got Autism at the back of my mind (& to be honest I initially thought it of Austin (but that soon disappeared) and then Rory) but was never going to be the first to mention it because all to often as a professional, I know, we can be quick to label children and we just felt that there were so many other reasons why Rory could behave in this way, and that it would be unfair to just make that assumption, before giving him a fair crack at learning the art of communication first.If Autism was diagnosed via blood or urine then I’d be all for a diagnosis, but it isn’t. It is very much a case of observing certain traits that are linked with the spectrum and to be honest, we are all likely to sit somewhere on the spectrum anyway, I just felt that we needed to look at this as a process of elimination and right all of the wrongs so far, with social interaction and learning the art of communication, before looking for a ‘diagnosis’ as per! The lady agreed, and she had said that Rory is a complex case and that we just need to work on his communication skills and then revisit when his trachy comes out and we can work on speech specifically.
We later received a discharge letter stating that the parents were well qualified and experienced, and the home well resourced to support Rory with his communication needs. And that was that.
Around 6 months into nursery and Austin is thriving, yeah, his speech is delayed, but he has made so much progress, we get 30 – 50 consistent words now, nursery tell us they are amazed by him every day and can’t believe the difference and so whilst we are obviously still working hard with him, our main concern is Rory.
I drew up a plan for Rory, we needed more consistency in attendance for him at nursery, how was he ever going to benefit from a day here and there, nursery was going to be one of the biggest gains for him, so we needed to work on getting him there and so i began a discussion with the CCG who fund his care package and the care agency who aren’t supplying cover because they don’t have the staff able to do Rory’s package competently, I spoke with the nursery manager at length about other options, and we had back up plans in place for worst case. Nursery hadn’t really had chance to get to know him because of his sporadic attendance, and what little assessment they had done of him, didn’t quite marry up with mine, and so I began to worry if my mothering instinct was blurring my professional judgement when assessing him and that there was something I was missing.
I looked around for external help. I got in an Early Years Professional to observe Rory and write a report on him. Chatting with her was so useful, she was amazing with Rory (& Austin) he responded to her straight away, me & ash couldn’t believe it. But it goes to show that although he is very selective, with the right techniques, you will get something from him. This process made me realise that he is capable of a lot more than we give him credit for, it’s just that he accesses everything differently, and he isn’t textbook. She also made me realise that communication is a human right and so actually, being discharged by SALT when Rory has no means of communication, isn’t fair or justified and so, I gave the report to nursery who agreed to work alongside us on this journey to communication land and I re-referred to Speech & Language who after a conversation agreed to a meeting the next day.
The SALT did lots of listening, took on board everything I said and observed Rory. She agreed 5 makaton targets and agreed to go into nursery to support Rory and nursery staff with his communication. Her first session in nursery was today! I’ve just had an hour long debrief with her, I’ll blog about it another time.
I looked into other means of support, including the disabled children’s team but the recurring theme was that they would get involved at a later stage when he was older and all the avenues we were exploring had been exhausted first. Nobody seems concerned – just me! I appreciate everyone is stretched and funding is at an all time low, but it’s not rocket science, and we are doing way more than most. Imagine if A&R were born into a different parenting agenda!
I joined lots and lots of support groups and forums online and found this really helpful because it made me realise that there are so many children out there like Austin & Rory, with a delay, but some who hadn’t had any of the contributing factors that we had. I read stories from so many parents whose children didn’t speak a word until 4, it gave me so much hope. Austin and Rory tick every box; premature birth, twins, boys, summer due date and thats without taking into consideration their journey in life being complex so far. It doesn’t take rocket science to see they will be challenged developmentally in every which way.
THIS MOMMA LOVES A CHALLENGE!
I looked further into an early years development coach. Her name is Joanne Jones. You can read about her on her website click here to follow the link!
You can also add her on facebook here!
I fell in love with her business model. She has 20 years experience of working with the NHS, specialising in speech and language, but has also owned her own nursery and worked as a post-natal doula. She has an holistic approach to supporting children with development delays, including those with additional needs, and does this by empowering parents to be the best professional in their childs life. How perfect for me and Ash, as educationalists already, we instantly needed to know more.
Jo recognises the gap between the amount of children struggling and the lack of funding, and man power in NHS and local council interventions. She also recognises the extortionate costs of taking on private speech and language therapists (we know, we looked into it) and has instead built her business on 21st Century methods.
She uses social media, technology, video calls etc to deliver packages of support and coaching. She is with you every step of the way, working with you, to enable you, as parent, to support your child’s development.
She is running a free LIVE at 9PM tonight on her Facebook Page JOANNE JONES THE EARLY YEARS DEVELOPMENT COACH and if you follow her you can ask her any questions you have about your child and their development, speech and language challenges and she will do her best to draw on her 20+ years professional experience to give you an answer. There are so many videos and resources if you just follow her online, you can access lots for free too.
We had looked closely into all of the packages that she offers and had decided to take on one in the new year as another way of helping Rory (& Austin) with their communication.
And then….Joanne advertised that she had written a new package and was looking for 10 parents across the world who were willing to take part in the 12 week programme as a pilot, and to provide reviews and support with building her business. Who better than an educationalist who also happens to be a blogger, read across the world. I applied. And luck would have it, we secured a place for Austin & Rory.
I was sent a schedule of tasks to complete each week, a calendar to book in 1:1 video calls and dates to be involved in online forums, live Q&A sessions etc. It filled me with excitement. I couldn’t wait to get started.
I completed a development history for both boys via the link she sent over, I took videos of the boys playing, as have nursery, to send over for Joanne to analyse and I have joined the private group of families from across the globe who are all part of this programme, so that we can also support eachother. I have my first hour long video call 1:1 with Joanne on Wednesday, by which point SALT will have been in nursery, I will have had a meeting to trachy train up Rory’s new 1:1 in nursery and I can discuss everything with Joanne, pulling it all together, before my meeting the day after with nursery to put small targets together for Rory in the hope of everyone pushing forward to give him every a fair crack at the whip!
Meanwhile, Nursery have been absolutely blown away by Rory this past week, they have said how he seems so much more alert, giving great eye contact and interacting much more. He has built a great relationship with his new key worker already, which is so lovely to see, and that may be a factor in him sharing a bit of himself with the nursery staff, rather than withdrawing himself like he did before, but also, I came across lots of research which has also excited me and whilst we haven’t taken any alternative therapies on as such just yet, some of the principles of it are filtering through in our every day life and I am wondering if this is also making a difference and ‘restoring neurological function’ as it claims to do so in the research.
On the subject of research, my Teacher friend sent me an interesting text last week following a staff meeting she had been part of, where new research is feeding down into schools regarding premature birth. Only over the past 10 – 20 years have extreme premature babies like A&R survived with medical intervention and so now, those children are filtering into schools, and research has been carried out in line with the increase of children with special educational needs and disabilities (SEND) drawing out links. The Professor who has done this research is called Prof. Barry Carpenter, and in a nutshell, these are the headlines relating to prematurity;
- Now an average of 4 prems in each class
- 63% of prem babies are identified as SEND
- 10% with ASD
- 80% of babies born at 26 weeks survive now compared to less than 50% 10 years ago.
- Between 28 & 32 weeks the nerve bundles which control speech and language development are developed. Babies born before this point are high risk for speech and language challenges.
- Emerging evidence that babies born between 32 – 36 weeks never catch up.
- Current evidence shows that pre-term children do not grow out of their neurological dysfunction.
- Phonics uses neural pathways – reduced in chn born prem – can’t hear sounds and blend.
When considering these statistics aswell, its no surprise that A&R, who were born a good number of weeks earlier than some of these bleak headlines, are challenged, and that’s alongside everything else that is stacked against them. Although actually, as my friend pointed out, this isn’t against them, the research, when looked at in more detail is about how our education system needs to change to account for the increasing numbers of pupils like Austin and Rory who are, and I quote ‘wired differently’ and that eventually this message will filter through to other professionals who will all realise that messages like the one we got from the health visiting team, that ‘prem babies are just classed as 2 like every other 2 year old because by the age of 2 they should have caught up’ is in fact NOT FACT.
Lots of things to get our teeth into, hopefully which will all help, putting one foot in front of the other and looking forward to all that 2019 may bring including the possibility of getting Rory’s trachy out, his next appointment on the 5th March.
2019 – come at me!