A very dark place

Below is a post I wrote for Leckey Design's new Firefly website. Thought I would pop it on my own blog for those of you who may not have got to read my words of wisdom or as I like to call it self-opinonated dribble. 

I've been writing this blog now since Zack was born.

It began as a way of me documenting his life, our life and all the emotion that travels with it. It also served to tell friends and family what he was up to and how he was doing.

It became clear that the blog also recruited readers that where very similar to our family. They too had fallen into a whole new world.

In thinking back to the beginning, I wonder what advice I would have liked to have heard. So forgive me this indulgence, but this is for all you newbies, I hope you find it useful.

Advice perhaps, or well meaning verse.

For whatever reason we choose to have a family I can guarantee that nine months of it will be spent (probably mainly by women but men too) imagining. Dreaming up little scenarios of your soon to be born child, what they will look like, what their little personalities will be like and getting giddy about all the adventures this new family will travel. It's like a glossy snapshot, idealised in your head, eager for it to be born into reality.

But what if that image doesn't come true? What if the change to your life is so traumatic and violent that it knocks you sideways?

For some families this is their reality. Some people, for whatever reason, go on to find that they are now parents to a child with a disability, labeled by society to have special needs.

Sometimes the diagnosis comes at birth. Sometimes it happens weeks or months later. And sadly, sometimes, it can happen to a child that was once living an ordinary life.

You suddenly find yourself in a very dark place. A lonely, unknown path and it can be extremely daunting. A path I found myself traveling having delivered my son Zack who was starved of oxygen at birth for eighteen minutes. This eighteen minutes resulted in my partner and I coming home with a baby that would need full time care for the rest of his life. Yet here I am four years later no longer afraid, no longer alone and with a new perspective on life that perhaps I would never have gained having lived my imagined life.

And this is what I know so far.

1. Fear and grief.

That's what you probably feel at first, fear. Fear of the unknown. Fear of how you will cope and fear of your new life. It's a scary time. You probably think why me, why my child? Life isn't meant to happen like this. For me it felt like someone had thrown me in a dark room shut the door and said there you go, find your way back to a normal existence. And you can find normality, it's very different to how you imagined, it takes time, but it is there.

Alongside all the rush of emotions I felt was also grief. Remember that picture that ran through my head for nine (well seven months, Zack was also premature) it had been destroyed. The child I imagined no longer existed and for that you have to allow yourself to grieve. The very best thing I did was to let myself feel loss for the child that could have been which perhaps (and it took time) allowed me to accept fully my wonderful son I have today.

2. Abandonment and support

Along with fear comes an overwhelming sense that the situation has happened to you and you alone. And in a need to quantify your emotions you start to search for others in your situation. First to find hope, to discover other stories like your own that give you a glimmer of a happy ending. Then when you do find them, you discover your tribe. A group of people that you probably didn't know existed before but they are there. The ones that have walked your road, are the branches you cling on to because they are the oracle, the people that have answers to things that may baffle you, worry you or quite frankly scare you half to death. Then you find the other new ones, the people like you, and you can at at last speak freely knowing that they just get it. The place that I found my tribe was the fabulous www.specialkidsintheuk.org to put it bluntly, they got me through the first year.

Slowly I found in my own local area there were other parents in my situation the one's that really did understand. I avoided other baby groups like the plague. To be honest I'm not one for baby meet ups and if that's what you like then go for it. But I knew that taking my not sitting, not eating baby to a session with lots of crawling, babbling bundles of joy would do me or Zack no good at all. For us it would merely shine a spotlight on the differences and what I needed at that time was to cocoon the two of us.

So whatever helps you, go out and find that support. Whether it's online or at a community baby group, find them and stick close by, they will be there in your darkest hours and share in your moments of joy.

3. Team Building

There are great doctors, there are good doctors and there are not so great doctors. At first I thought being a medical professional in whatever field from paediatrics, speech and language to physiotherapy, that they knew my son best.

Looking back I now know they didn't. I did. I was the expert. You will probably have all sorts of terminology thrown at you. You go home and google it and then that magnifies your already bubbling terror tenfold. Don't google. Trust your instincts. Find the professionals that you know you can work with. You need to build your team, we have one, it's called Team Zack, (original isn't it?)

You need to trust the people that have the medical expertise but ultimately you are the one in charge. My son has cerebral palsy, he is visually impaired, he can't eat so has a Mic-Key button, he is non-mobile. I was told what his life was likely to be like and yes on paper it is as the good doctors suggested. What they don't mention is the amazing things my son has accomplished. How he has learnt to communicate with us, his unusual and sometimes dark sense of humour and his ever increasing ability to surprise me.

So yes, medially they have training and experience but you have the inside knowledge. It might not seem like it at the beginning but that gut instinct is your strongest team player. Make sure it's always front and centre.

4. Therapy and a bit of acceptance

Aaaaaah therapy or the immediate search for a cure all. Like the googling of medical terminology another thing, that quite naturally you may try to do, is find some form of treatment or therapy that will eventually fix your child.

Sadly out in the big world wide web there are, I think, people that will quite happily take your money in return for promising massive changes to a severely disabled child. For some parents it can take some time to accept the situation. Everyone deals with things differently. For myself and my partner Dan it was pretty quick that we accepted our path in life. I think once you accept that you can't fix your child it gives you a clearer outlook on life. At the start you are overshadowed by naturally wanting to make things better, like any parent would want to do. And please, do not think that I am suggesting you give up (more on that later), I am not, I just think it is easier to move forward if you are able to accept the situation within which you live. But be kind to yourself. It can take a long time, it can be quick, but it will happen.

So do your research. I am a big advocate for therapy. I tried a couple of different places in the beginning and have now finally found one that seems to encompass the three major areas that my son needs encouragement with, that being physiotherapy, speech and language and independence. The therapy Zack undertakes is conductive education at the fabulous Legacy Rainbow House.

5. Hope

My biggest piece of advice to parents would be, never give up. Don't lie down. Don't give up on your child. You are their voice, their advocate and the means by which they will experience the world and be accepted into society.

Despite being told my child will be and I quote seriously disabled (this was said to me by a consultant twice in one sentence just in case I hadn't realised) I made every effort with Zack and still do to help him make sense of his world.

Hope is very powerful and I have hope in abundance. Realistic hope. I mean I don't think Zack will ever walk or talk, (however having said that over Christmas he did some stepping in a walking frame and distinctly said yes to me, several times). My realistic hope is that Zack will be able to do much more than you would assume if you read about his condition on paper. And that is what he is doing.

Don't give up.

There you go some advice from someone down the road. I hope it was helpful, not presumptuous or upsetting. We are all different and deal with things in our own way and this is just me and who we are. And whoever you may be and whatever road you are on I want to say one last thing, you are not alone, be brave, be strong and enjoy the ride.

I did say pigeon poo

We've all been off on a little jaunt to Sussex. After almost a year and half we returned to the Advance Centre to continue with the therapy that we started with Zack when he was a baby. So I don't bore you please look at my previous posts about this therapy if you want to understand what it's about.


Anyway, we had an extra companion this time, Scazzzahhhhhh. Double trouble on the journey down, which wasn't too bad as journey's go. I also booked us into an apartment for three nights to give us more space and a kitchen area to do his lordships blended diet. Well, you can't exactly mix up a shepherds pie concoction in a travel tavern, premier lodge....whatever those places are called.


Apartment was nice. Girl let us in, all looked good, she said goodbye, we settled in by shoving our backsides on the sofa and trying to get the TV to work. Dan came back five minutes later to say that he had dropped the keys down the lift shaft. Good start, quick call to nice lady and she told us just to get a spare set cut from the spare set we had. Right then, all unpacked, we notice we are attached to Asda. Perfect.  We are in the middle of Crawley town centre. Ooooh great (sarcastic great not as in yay great). We have six locks on the door leading into the apartment. Hmmmm, okay, well could just be overly cautious or we're going to die in Crawley. I don't want to die in Crawley. I needn't have worried it was all quite nice actually. Apart from the fact that the cleaners had left the windows open and the pigeons had shat all over the insides of them and it hadn't been cleaned. Go me cleaning and disinfecting window sills. Just like a home from home.


The day we left I mentioned it to the girl who tutted and said she's told the cleaners loads of times not to do that (by that I mean leave the windows open not poo on the window sills). After we left I got in the car turned to Dan and said I did say pigeon poo didn't I and not the words there was pidgeon shit all over the window sill. I still can't be sure of my correct phrasing. 


Dan said, "How come bird crap is somehow less offensive than dog shit?" "What are you on about?" I asked him. "Well, if you told her that there was dog shit all over the window you would have gone absolutely mental over it. But bird poo, it's all okay."


He does make a good point.


So the apartment aside the therapy went well and we managed to concentrate on picking it all up whist minding two children. Zack wasn't really interested in it at all, in fact he was having a three day off week. Scarlett had a fan club. A lovely little boy who would come in each afternoon. Run over too her and shout "Hellllloooo little baaaaby." I think he was autistic. I let him have a cuddle with Scarlett, he was very good with her, until he covered her eyes with his hands. She wasn't that bothered by it, she just tried to bite his arm instead.


Whilst we were away Scazlah received her first DVD. Yep. Mickey flippin Mouse Clubhouse was purchased to keep her entertained in the pigeon poo flat. She also used Zack's little floor seat for some extra good T.V watching.

Zack did some extra good sitting.

Slept in his own room. Had his mum get in bed with him until he fell asleep. This has since lead to unasseptable behaviour (I know it's spelt unacceptable but I like to spell it as Super Nanny phonetically pronounces it), ahem, yes, unasseptable behaviour at bedtime. Bringing us back to square one with bedtime fights again. I gave in a couple of times and let him fall asleep on me. Dan caught me and asked me what was occurring, I lied and said he just fell asleep when I read to him. He knows I lied. I don't care. He was very cuddly cute.






So far we've managed to do the therapy almost every day. And Zack has fought bedtime almost every day. Reasonable success and a pigeon poo free home equals good times.

I wonder if she' ll give me a sticker next time.

Have been continuing with the torture routine and Zack is now getting used to it which means less screaming and carrying on.  He is doing well but I still can't help but think that when I am doing his stretches he is deliberately not allowing me to move part of his arm or leg just to show he's the boss. 


Managed to get back to doing his Advance therapy which has been hindered due to his reflux. In fact have managed to do quite a bit thanks to having some home appointments rather than outside visits. 


We had the physio round this week and she has put in the recommendation for Zack to have some Piedro boots fitted to give him some more stability in his legs. She mentioned that he might be better having leg splints to keep his feet and legs in-line as they are turning out slightly. I am not so sure about them, not because it's more "extra" special needs equipment but I not sure I like the thought of his legs being held in a position all day by splints. However having spoken to other people whose children have splints it seems that they are a good thing and some wearers aren't bothered by them at all and actually stand better in them. For now I think we are going to try the boots and see how we get on.


Zack's new car seat has arrived. The Mini Carro. I sat him in it in the house as a trial run and he was very happy. I took him out in it in the car and he HATES it. Oh my lord I thought he was going to explode or have a heart attack. Still, he was a little better on the ride home and as usual I will persevere as it has to get better. His mood improved when I started singing to him, but how many renditions of the Wheels on the bloody Bus do I need to go through to stop him having a fit of rage in his expensive car seat. 


In defence of this seat I have to say it is much better than our other one, more supportive and comfortable for his highness.  Maybe he just hates cars. I think it's the one time I wish he could talk and tell me what the problem is, I am not giving up though, he will get better. Fingers crossed. Either that or I'll just have to use public transport. Oh the thought of it.


We had gone to the dentist in the new car seat. Dentist likes to see the children early so they get used to them (early in their lives that is, not early in the day). She was very gentle and had a little look in his mouth and feel of his gums. His teeth, all three and a bit of them, are fine. She told me to brush them twice a day and that she can feel the other bottom four coming through. And that was it, see her again in six months.  Don't know about getting him used to it but I think by the time we finish visiting I'll have gotten over my fear of dentists. I wonder if she' ll give me a sticker next time. They had a nice selection.

Zack has discovered the best place on earth

Friday didn't bring good news. We had a call from the doctor to tell us that the little episodes Zack was having are most probably seizures. As they weren't distressing him we decided between us to leave things until Monday when the doctor speaks to our consultant about it all. 

I was upset at hearing the results but I suppose it was inevitable, given Zack's very rough start, that he was not going to get away without suffering some form of epilepsy. 

The trick now is to find some form of medication that stops his seizures but doesn't have many bad side-effects. ie. doesn't sedate him so much that we can't progress with him. 

Having done a little bit of research and in speaking with other parents it seems that although there are side-effects to the medication some people have found that when they get their child's seizures under control their development has improved greatly. One parent has told us that infants who suffer infantile spasms have a specific brainwave pattern that is pretty much making the brain behave chaotically, therefore, once this is under control then you can start moving forward.

I am glad that Dan and I have picked up on this pretty quickly, I think the longer you leave it the more damaging effect it can have on the brain. I am going to ask the doctor for an appointment with a neurologist so that they can explain in detail the ins and outs of it all and what this means for Zack. Mind you I expect that this will be all doom and gloom as doctors don't usually have any words of hope or guidance for you, you have to find that deep within yourself.

On a lighter note, Zack has discovered the best place on earth, apart from on my shoulder that is........he has been spending time in his new little room. Yes, the little box arrived this week. It is basically a box with three sides and a perspex top with holes in it. It is based on the Little Room theory by Lilli Nielsen:

http://www.lilliworks.com/prod04.htm.

Dr Nielsen was an expert in educating children with multiple disabilities and the Little Room is used to allow babies to develop their senses within a smaller contained area. Oh, check out this link for more details, it will stop me babbling on:

http://www.lilliworks.com/about_dr__lilli_nielsen.htm

So, I popped Zack on his changing mat and slid him inside the box. I had already hung three little toys down through the lid. There was some protest at first but then he started moving his arms about and kicking his right leg. Vision lady (who delivered the box) explained that babies start to reach out by first accidentally hitting things, after a while they then realise that they can control their own hands and arms in order to grab and reach for things. 

Zack stayed in his little room for a good 30 minutes bashing away at his toys, every so often he would stop and turn to his left to see what he was hitting on the other side. Loving the box and we have until September with it, then it's over to Grandad Price to build him his own (even though his Grandad doesn't know this yet.)

Today in Warrington, it was Disability Awareness Day. This is a huge event for everyone and includes lots of exhibitors with information and advice, as well as your usual entertainment of pub singers, dancing girl groups and some bloke under a tent with several birds of prey. We picked up lots of information about various groups and charities that can help Zack. One that looks interesting is Stick and Step, it's a charity in Liverpool that offers free therapy to children with cerebral palsy. They have a mum and babies group which I am hoping to take Zack along to so we can find out what it's all about. 

Zack's big operation is next Wednesday and I am still terrified. Dan isn't and Zack certainly isn't but I can't wait for it to be all over and to have him home with us. I pray every night that he will be okay. I know it is only a short operation but that isn't going to stop me thinking something awful could happen, I may be being a little morbid and negative but that's my baby boy I am giving to someone else to look after. He was in hospital for seven weeks of his life and going in again, even for just one night, brings it all back. Roll on this week I can't wait for it to be over with.

She suggested we up his oral fluid in-take to 10mls of water

This has been a busy week for the Zacky Pants, it's been full of appointments, travel and has given us all plenty to think about it. 

Monday was Feeding Clinic day

This is a visit to the Child Development Centre in Warrington. Lovely place, friendly staff, nice building, I think we are lucky to have somewhere like this in our borough. We met with the Speech Therapist (ST) and the Dietitian. What usually takes place is Zack gets naked, shouts a lot, gets weighed and then the Speech therapist pops her finger in his mouth to see how his sucking is coming along....you can see how he loves going to these sessions!

This week, he did brilliantly. He has put on some more weight and is now 9lb 3 and has grown a little more, 52cm in length. But the best thing was his sucking has improved a great deal. ST was very, very pleased with his progress, she thinks he is developing nicely and it seems, in her opinion, he is delayed developmentally, which although isn't perfect is good as he can catch up.  ST was so happy with his progress that she suggested we up his oral fluid in-take to 10mls of water. Ten I shouted are you sure. Mmmmm. Okay seven. Seven! Okay I tell you what go with 5mls before each feed. 

And so 5mls we have been trying before each feed and he is doing great with it, having a good go and swallowing it all I am so proud of him. 

Tuesday we went to see eye lady 

Again we were at the Child Development Centre. We got taken into their nice sensory room and met another lady who specialises in working with children who have visual problems. 

Before we go in we have to take our shoes off.....so now we are all sat in this white plastic room looking at a bubble lamp and I am wondering if its my feet or Dan's that smell really stinky. 

Anyway, Zack seems to be enjoying the bubble lamp and eye lady is very impressed with his intense watching of bubble lamp....then Zack decides to do his usual trick of falling asleep. Appointment over with in less than 15 minutes. However, new lady suggests she comes to our house for a visit and will bring with her a new house for Zack. Personally I think the one he lives in is fine and was quite offended that she thought he needed a new one.

It seems Zack will be the proud owner of a cardboard box house! Apparently there is a theory that to encourage visual development babies are better off with no other sensory interaction, so by popping them into a box with visual things for them to look at it cuts out all of the other distractions. Great, in the middle of Zack's pretty nursery is going to be a cardboard box, never mind, by the time I've pimped it up it will look fabulous.

Following visit to eye lady, I went off for a visit to the dentist, to be told I am to come back in a couple of weeks for root treatment and some fillings, fantastic.

Then we went over to meet a lady whose little boy has had a gastrostomy. (By we I mean Zack, Dan and I, not the dentist, I am sure she wouldn't be that interested.)

The little boy who is two has a Mic Key button, slightly different to the PEG but the principle is the same. She was very nice to chat to and showed us what Zack will end up with which isn't that bad and will be much better for him than his NG tube. She also told me that gastrostomy's heal very quickly which is good to know, as I was wondering how easily they are to reverse. 

Wednesday - Visit to the Advance Centre for the Scotson Technique

I suppose any parent with a child who is disadvantaged will look to find the best therapies that can help them. Sometimes we are all looking for a wonder cure that may just perform a miracle and help your child to become more, and I hate using this word, 'normal'. 

We just want to help Zack, and I will do everything I can to make sure he has every opportunity to develop to the best of his potential. This has led to many hours researching therapies, talking to other parents who have had success and failure to varying degrees with different forms of therapy. 

By chance I came across the Scotson Technique, 

http://www.scotsontechnique.com

It is a therapy developed by Linda Scotson and works on the theory, and I quote here from the website:

 "develops the potential of the uninjured brain by enhancing the respiratory and circulatory systems to deliver oxygen to the body tissues. This is achieved by the gentle manual delivery of breath and pulse-like pressures which copy the effects of breathing on the body tissues and circulatory systems."

Huh! 

Yes that's what I thought when I first read it. I'll put it into language I understand.

Basically, a child's growing brain needs a lot more oxygen to grow and develop, most children who have suffered a brain injury also suffer with their respiratory system, therefore if we can help to develop a correction in breathing, more oxygen will go to the brain helping it to develop. 

Typing this here makes it all seem a bit pie in the sky, but I do understand where the theory is going. I'll never forget the day Zack was in the incubator and for some reason he had a funny turn, his oxygen levels started to drop so the nurse gave him a quick burst of oxygen. This was when he opened his eyes for the first time and the nurse, commented on how he liked the extra oxygen. For Zack this was the turning point, this was when he started on his recovery to come home. I am a strong believer in oxygen being necessary for the healing and development of the brain. However, the therapy costs a lot of money. Whilst I would happily sell my soul to the devil to do whatever is needed for Zack I don't want to just throw money away on a whim.

Hence our road trip to West Sussex. I took to the wheel for the journey down. Dan got off lightly as Zack decided to sleep all the way there. This was not the case on the way back when i was stuck in the back seat with the Pants who decided now was a good time to be wide awake for the next four hours and have a hissy fit. 

The centre is in East Grinstead tucked away behind two buildings. we know this because we did five laps of the one way system before we got directions to the building. We met with Linda Scotson who explained in great detail the theory behind the practice, she also took a look at Zack and showed us how his back is curving and how he is using superficial muscles to try and do the things that most babies would naturally do, the problem with this is that they won't support him forever and when he is older they will collapse due to his growing height and weight.  I know Zack doesn't breathe well he sometimes, when he gets stressed, pants quite fast, almost like he is hyperventilating, he also doesn't like being on his back and tends to roll to the side when you place him there. Linda pointed out that he probably likes to be held a lot, which is true, this is because it makes it easier for him to breathe, again I have to say this is true, when you hold him, his breathing becomes calmer and more rhythmic. She also thought he was very alert and suggests that a lot of his problems are physiological rather than neurological.

We left with a lot to think about. Usually I am quite good at making a judgement call on places or people, I get a feeling about it, (I am starting to sound like that woman off the Apprentice who believed she had the gift of intuition). Anyway, with this place I don't know I just couldn't say for definite whether it will help or not. Dan and I have spoken about it over the past two days and our conclusion is the same. We can sit here at home and not go and then wonder if we did go whether it would have helped him. Or we can go, spend the money, spend our time and invest in it and it can either do nothing or it could help him a great deal. So we are going. We are taking the chance and giving it a go, at the end of the day it's only money and time. If it doesn't work it doesn't work but at  least we will have tried. 

Friday - And mummy rested

No she bloody didn't. She got up fed the Pants, winded the Pants, dressed the Pants. Went into town so Zack could pick up a Father's day present. Got back, cleaned the house, cooked the tea and finally sat down for two minutes to write this blog. There is no rest for Mummy!