This post is an anonymous guest post*
I’m going to start much from the beginning so you can get an idea of how our family became how it is today. On the 6th july 2006 we had our first son he was premature but thankfully had no health problems and that was family life for 21 months. We had our second son on the 30th April 2008, I was induced all 1st signs were fine.
He did well until he was 2 weeks old at this point he was vomiting at every feed and not growing, we tried different milks following advise of our Health visitor this did not cure the problem if anything it got worse, by the time he was 10weeks he was only 7lb after another consultation and attempted discharge, they finally agreed something was wrong and run some tests he had pyloric stenosis and duplex kidneys.
I had informed them of myself having pyloric stenosis but this got dismissed, I happened to read his notes and the referral from our health visitor had written ‘paranoid mother suffering with depression, possibly over feeding causing sickness’. This made me angry but he was treated he had an operation which cured that problem although he still eats like a sparrow and is very petite for his age. He is on medication for his duplex kidneys but he has been clear of infection for well over a year.
Then came our third boy he was late and I had a very quick labor and all his first signs until he was a year were perfect he hit every milestone, he was learning new words daily. It was very exciting as he was last and I didn’t wish to miss any of it. But then the words disappeared, again it got dismissed by Drs and Health visitors. I was told it was a phase he would start to talk again I still worried but hoped they were right. But at the age of 2 I was very concerned his speech hadn’t returned he would learn something one day than forget it, he wouldn’t look at me or anyone,he hated to be touched.
He wouldn’t play with toys he just put everything in his mouth and he had no idea that he had brothers they were not in his world,’Ryan’s world as we call it’. Thankfully this time we had a fantastic Health visitor who agreed there were worrying signs who referred us to everything possible within a week he was seeing a pediatrician,Portage workers became involved to try and get back what he had lost,speech therapists,dietitians you name it we were offered appointments.That is when it all became REAL our son was ill and we didn’t know what was causing it or what we had done wrong !
His paediatrician was brilliant he explained everything at the first appointment he again agreed there was something wrong but had numerous ideas that needed more tests. But even at this point I knew what he had and it felt like a life sentence Autism,he also has developmental delay,PICA,joint laxity and loss of hearing in one ear.
After all the help we were offered in the beginning this fizzled out.Home life was getting very hard. He needed more speech therapy and play therapy and this was just not available he has NHS speech therapy once every 6 weeks and portage once a month then it is down to us.The tips and ideas worked a few days but then the interest faded. We decided we had to get more by going private but how were we going to afford this !
His pediatrician and GP recommended applying for DLA helped form fill and provided all his health records so we could apply for this as my husband wage just couldn’t cover all the costs. Private speech therapy costs £35 per 30mins and play therapy is £20 per hour per week so the costs add up his DLA doesn’t even cover this but it helps especially with my husband taking time off work to come to appointments so we are always on the same page.
But this is where I become upset as my sons disability is only visible when you attempt to engage with him. I have been called a scrounger and this hurts we are trying our best but the NHS and local council do not have enough resources,so we had to go private,some people may say why ?
It was a hard decision we did not wish to apply for benefits we had always worked myself 3 jobs at one time and my husband still works in excess of 70 hours per week and we don’t get Tax credits. We do not have the life of Riley we have a 4 bedroom house,We have the necessities we would love to have more but we just cannot afford anymore. Ok some people think me and my husband having a car each is also incorrect, but if one breaks down we would be stuck he couldn’t get to work and I couldn’t do the school run or therapies.
I suppose that is our only luxury but then again they are not the best cars but they go.I gave up going out when we realised this was happening our only real escape is once a year to his works Christmas party,or if we are lucky and Ryan’s having a good week I would trust my sister or close friend but this is so sporadic.
So that is how it all started.
I will now tell you about our day.
My husband wakes at 4am he leaves for work at 5am. I then wake at 630am get my self ready and prepare breakfast then start waking the children the first I have to wake is Ryan. It is 7am no if no buts because if its any different the day will be made harder. He has milk immediately, I wake the other 2 who follow the similar routine.After milk we have breakfast then a wash this cannot be before or after 745 as again this upsets his routine.We dress at 8am.
Coats and shoes on the out the door at 815am for the first school run. I take the eldest into school then back into the car to take the middle one to pre-school. As I arrive everyday at 845 we do speech therapy in the car,its a nice little story and seems to get him engaging the fact its not a person is really helpful.Then I drop the middle on off at pre-school at 9am. At 915 we arrive home, for 30mins we do sensory play have short break for a snack then we do play therapy for 30minutes.have a another short break then off for speech therapy.(this is my average Wednesday)
Then its back to pre-school to pick up the middle one we make it home at 1215 god forbid we are any later as this can be major meltdown time. He suffers from PICA and has an excessive appetite. At 1245 I get a break for an hour 
Then we finally get to give our furry friend Barney our dog some time, we go for a nice walk has to be my best part of the day a chance to relax I know mad but this walk gets us out of the house and from being enclosed, and I really see Ryan come to life looking at new things his favorite item is now a duck and he can say it 
Wednesday he is normally very tired as he has had PE. We get home at 330pm James reads to me in the kitchen, then My husband John calls to let us know the good or bad news.He’s home tonight 
Once baths we start quiet time we attempt to read to all the boys together this can be hard work,but it is so worth it when James can read at the age of 5 and Marcus is starting to recognize words.Ryan however doesn’t like everyone’s company so this can over stimulate him making him very upset,when this happens myself or John take the other 2 into there room and continue reading whilst one of us settles Ryan this depends as to who is the calmest I can get stressed by the whole picture.At 7pm we put them all to bed.
Ryan takes a good hour to settle (hopefully not for much longer as I have a brand new weighted blanket coming which is supposed to put an end to night time waking,here’s hoping). After he settles more hard work its the preparation for tomorrow. So I give it a good clean every floor and surface must be free of dirt as Ryan will pick it up or lick it up.I then start clothes washing,folding and ironing. Sometimes my friend helps with this if shes had an easy week at work shes a cleaner and ironer by trade.
Then lunch boxes as much food prepared as possible, clothes all laid out and making sure we have everything. I have been known to go to Asda at 1am as we have forgotten something. I then go for a quick run this is only possible when John is home this is my escape it is thinking time 4 miles of just pounding pavements its bliss. I then watch a short amount of Tv then its off to bed its normally 12 ish.And then it all starts again.
Our weekends our very similar,But this weekend will be tough we have a plasterer in at 9am so the lounge will be out of bounds,so we will have to eat in the kitchen this will cause upset to Ryan,also leaving the house could be awkward it will be up to one of us to look after 3 kids outside of Ryans comfort zone. So we could have hitting,biting,screaming,being told to discipline our child by other people etc etc.
But we know this is just Ryan struggling he is stuck in our world being told what to do. I wish I could get into his more often most of the time it seems very pleasant and he is happy.but routine is such a must for us,We will learn to deal with the stares when he is having a bad day,we will get excited when he learns a new word again or looks at us. Tomorrow is very exciting he is off to pre-school with me OK for 30 minutes but it is a start.
