It’s not us, It’s you

I have lost count of how many times I have accidentally stopped a conversation dead, how many new friends I have lost before I even had them and how many times I have managed lose invites to things because of Eliza. You know that awkward feeling when you meet new people whether it be a friend of a friend you bump in to, a new toddler group you are trying out or just chatting in the queue at the supermarket. Somehow, don’t ask me why, but if you are a woman you always get asked that question….. “You got any kids?”. Naturally I reply yes and it ALWAYS leads to the next one “So what school are they at?” and that right there is the question that gets me in trouble if you like. As soon I say the name of Eliza’s school it is the biggest conversation killer ever. (She attends a special school because she is unable to cope in mainstream). The odd person will politely nod and accept what you just said but so many drop to full on silence. Her school is great and has an impressive reputation so please  don’t get me wrong,  It’s not the school being mentioned that stops them dead, its the fact that she is ‘special’.

It saddens and shocks me how people fear special needs and how misunderstood Eliza is simply because she is autistic. A lot of people drop to silence because they don’t know what to say, how to reply. In some ways I prefer that because its miles better than hearing stuff like “Oh yeah I read about that, she just needs some good discipline and she will grow out of that phase”…….. Ahh yes, thanks for that (said no parent of an autistic child ever!!). It’s a shame really as you are missing out on me and I am pretty awesome as a friend, even if I do say so myself lol. You are also missing out on getting to know Eliza because behind the autistic diagnosis is a cheeky, feisty, independent diva who is a top notch negotiator where having time on the iPad is concerned. A girl with such a strong personality she has tried to charm the keys off staff many a time at school so she can get outside on the slide. She has the most infectious cheeky giggle and smile. A proper tom boy in personality yet when the mood takes her can be a delicate princess or a super hero taking on the world. Yes, she attends a special school. It doesn’t make her less of a person and it certainly shouldn’t stop you getting to know us. She is special, in fact she is blooming amazing and she is mine. Your loss people, your loss.



When Two Teams Become One Again

oijlknmOver the last six weeks my husband and I have mainly been apart. We have spent less than 4 hrs a week together. Our conversations have been brief and mainly done via text or Facebook message. The only time we spoke on the phone was for urgent messages or when the kids were asleep so they could not hear the conversation. Don’t worry, this is not a marriage breakup but it was a separation that was unexpected and split the family in to two ‘teams’.  Our son, Noah, was 2 in January and recently became very ill and very quickly leading to a lot of time in hospital (Team Noah) meaning Eliza was at home with one parent through all of this whilst also working her way through a few incidents at school that caused her injury so her anxiety rocketed (Team Eliza). Hubby and I became a Tag Team so we could care for both children and their needs with me staying in hospital Mon-Fri and returning home for weekends and hubs doing the opposite. It was the best we could do between us as it meant he could work from home in the week when Eliza was at school. We saw each other briefly at ‘hand over’ which was a mere ten mins here and there as the hospital Noah was in was over an hour away from home and we didn’t like leaving Eliza without one of us for too long. Family  were great at helping and enjoyed her company whilst the travelling took place for hubby and I but I think it has been an eye opener for them about the anxiety she often hides so well.

Noah had the symptoms of a Urinary Tract Infection and was treated with antibiotics (two different lots in fact over 2 weeks) but started to become quite unwell. I took him to A&E and he was admitted with what they thought was a kidney infection so he went on to IV meds and fluids and a catheter was put in as he could not pass urine without it. He had an ultrasound that showed a very infected kidney (plus kidney stones) so stronger antibiotics were given via IV and he often needed morphine for the pain. A repeat scan was done 3 days later and the expected outcome was that the infection would be clearing. After all, at this point he had done 2 weeks oral meds and almost 5 days of IV meds. The scan was shocking, the kidney was getting worse instead of better so we were transferred to the children’s hospital where the specialists were that could look in to why. Long story short – After a failed stent to kidney, failed drain in to kidney, numerous scans including a special dye scan to determine function of kidney (there was pretty much none!) we were lucky to fall under the care of the senior specialist who simply had a gut feeling that he knew the cause and it turned out he was right. From what they told us, Noah is only the 4th case in that hospital in 15 years or more to have this rare condition and he is certainly the youngest they have seen. Noah had his kidney removed and has to return in the near future for removal of some stones and many check up scans and bloods. He is recovering well considering what he has been through. We have been put under the ‘Rare Disease/conditions’ team also.

(For those that may be interested in it, this is it – Xanthogranulomatous pyelonephritis (XGP). XGP occurs in approximately 1% of all renal infections. It is 4 times more common in women than in men and is usually noted in the fifth and sixth decades of life. XGP affects both kidneys with equal frequency. Although XGP is rare in the pediatric population, it is found in approximately 16% of pediatric nephrectomy specimens. In children, XGP is more common in boys and usually affects those younger than 8 years. Ref

Whilst all of this was going on Eliza was doing her best to understand why we were not all together, why Noah was ‘missing’ which is how she described it. Sadly she had also been injured at school a few times by other children during this and ended up with a black eye and teeth marks on her arm. Her anxiety was through the roof and we have has many meltdowns which we have not had for a while but they are expected after everything. The Easter Holidays happened at the time Noah was heading for surgery so she was already out of routine with no school so her entire world fell apart for a while. Considering what she went through, she coped so much better than I expected. After all, there was no time to plan for something none of us expected to happen. It took a few days to encourage her back to school last week, she kept saying “School is dangerous”. If I had been given a black eye and bitten, I would feel the same too!! She has settled back in and slowly the routine is getting back to ‘normal’. Noah is home recovering from surgery (although you would not know he has had anything done the way he is dashing through the house as usual).

It’s funny how kids recover fairly fast to things yet I am nowhere near over any of this. My heart and head are still in pieces. Every moment I was in hospital with Noah I felt guilty that I was not home with Eliza. Stupid things went through my head every minute. Was she ok? Did hubby remember she had swimming today? Does Nanny know Eliza can’t drink orange drinks? Was she ok at School? Does Daddy know where the uniforms are, where the timetable is, did he put pull ups in her bag, does he know what she has for lunch……..???????? Yet the minute we switched and I went home I felt guilty at leaving Noah. As much as I loved spending time with Eliza and she very much needed mummy time, at the back of my head was fear. What if he became worse? I would be an hour away at best through traffic and that is after I find someone to stay with Eliza. I am not ashamed to say that many times in my head I panicked “What if he dies and I am not there!” and I am pretty sure hubby felt the same when he was home. I have never felt like such a useless mother than I did during all of this yet deep down I know I did my best. It really hits home how hard it is when you have more than one child and one becomes so poorly they are in hospital yet the child at home, autistic and struggling with anxiety needs you too.  My heart aches for what both children have been through but it’s healing slowly as I watch them together, reunited in chaos and cheekiness. The look on Eliza’s face when she walked in the lounge and saw he was home was a look I will never forget. Neither will I forget the look on his face when he saw his sister “Eye-za” coming towards him with a hug. We are all (for now) back together. Team Blooming!!!







It has been a busy few weeks so yet again I have neglected the blog! Time just runs away with me, life takes over and often I sit here with the intention of writing a new piece and then something else happens and it gets put to one side. We also had school disco, parties, half term…. Apologies all, let me fill you in on what has been happening in the Blooming Household.


Those of you that follow the blog and/or our Facebook page will know that Eliza suffers greatly with anxiety, it really impacts her daily life. I pushed her comfort zone a lot and took her to Horse Therapy. Lovely little club at a local stables at weekends that works with Special Needs children. The children get to groom ponies, lead them around the yard, hug them and some ride if they want to. The first couple of weeks she didn’t do much, anxiety took over and she spent most of the session on the floor crying and kicking my legs. She started to enjoy it towards the end when she realised it was OK, nothing bad was going to happen. As the weeks went on the meltdowns became less and she was offered to sit on a pony, she did and instantly relaxed. Not a care in the world. Her balance was incredible considering she sat bare back and never even sat on a pony before (we tried once when she was younger, lasted 3 seconds). The following week she sat in front of one of the instructors, again no saddle and they rode for half an hour. Anxiety gone completely, she was so relaxed her speech was non stop, constantly chatting about ponies, school and gold dubloons (like you do). The last time she rode was a couple of weeks and she was so relaxed she was yawning. Telling the instructor as she rode “There is a pony over there…. under the tree….. it eats hay you know…… it’s a brown pony……” She even helped feed ponies after and led one to the field alone (with teacher in front and me behind just in case she let go lol). As we were about to go home she gave the teacher a hug! Unprompted and lovely to see, her way of saying thanks. Horse therapy is great and we will carry on with that weekly.


We have been using essential oils around the home to aid relaxing and calming. I found some small metal diffuser balls (look like tiny baubles with holes in) that I can discreetly hide around the house. I often sit in the same room as her before she heads to bed and I light the burner too. I have noticed she quite likes the oils and we have had some mixed with a carrier oil so she can have some on her skin (she loves a foot rub). Other than making my rooms smell amazing, they do seem to take the “edge” off her stressy self that we often get more towards bedtime as she struggles to wind down and switch off. We will keep up with the oils and I will keep you posted about how we are doing.

Last week we started a homeopathic tablet called Calm N Restful. Completely natural and harmless. I was hoping it would help at night time when Eliza struggles to switch off. Day one showed a little change, she was more relaxed and less jumpy. Day two onward she has been much calmer in the evenings and found it a lot easier to switch off and actually sleep. Usually bedtime is an endless battle and she’s up till after midnight. She gets so anxious about all sorts of things and her brain struggles to process things and she ends up upset. The last 5 days she has been asleep by 9.30pm so a huge improvement. We still get a lot of sleep talking (and sometimes sleep yelling) but the bedtime routine has been much easier. The added bonus is that as she now sleeps a little better, her morning routine is full of smiles rather than tears and grumpiness because she was always so tired. They can also be used for daytime when facing things that cause stress or anxiety. She had one before a party at the weekend and she was much more confident and had a wonderful time. So far they have had a fantastic impact on her so we will continue to use them for now. Even school have noticed how much calmer she is and that she is more focused.


The letter above I made the other day ready to ‘deliver’ to school next week. I found a template online then added the written section an a picture of ‘Santa’. Eliza LOVES Christmas and this may work in helping lose a few habits she has picked up at school. I often chat to her teacher and give them’ammunition’ they can use as needed whether it be for motivation or a helping hand towards some behavior issues. This might be something like a programme she loves currently or photo’s of something she enjoys. Every week on Monday she takes in a piece of A4 paper with pictures on from what she has done over the weekend. It’s used as a prompt to remind her what she can talk about in class when they discuss the weekend as she often forgets when so busy at school.

So there you have it, a few things we have been doing since the last blog. Eliza changes all the time, I can not believe she is going to be 7 next year!!! Where did the time go?

Why routine is important to us and why we purposely break it


I used to wonder if routine really worked when we first found out she was autistic. I remember the consultant, speech therapist and even nursery teacher all saying “Routine is key”. To me I was thinking what a boring life that would give her as I didn’t know or appreciate how bigger part of her life routine would become. They all told us to start small, meals at certain times and bath at certain time and so on, gradually introducing other things that were daily life. In time we created a daily planner board so we could add ‘extras’, you know the things that don’t happen daily but need to be seen as happening. Eliza is a very visual child, she likes to see (and memorize) what is happening in her life. When she gets a new timetable for school, she knows it lesson by lesson after a couple of days. Handy for the days that I forget what we are doing but she doesn’t and announces things like “Mummy, it’s swimming today”. Yes, my 6 year old has a better memory than I do!

Yesterday I had a phone call from school mid morning. Eliza had an upset tummy and had had diarrhea so, as per school rules, she needed collecting and has to be off for 48hrs minimum as a precaution. I popped Noah in the car and went to fetch her, checking in at reception to wait for her. The school nurse appeared and asked if I could go to class and collect Eliza as Eliza was refusing to leave class. So off we went, and as I entered the class room I was met with a ‘What you doing here’ look from Eliza and her not so subtle “Goodbye Mummy, see you later” announcement. She wasn’t being rude, she was in her right to say I needed to go because Mummy is never at school unless invited to class events likes sports day. She was confused as to why I was there. This was school, this was her thing and I was not supposed to be there. I had not been invited!! I got down on my knees to her level and asked her to come home, she refused. I explained in basic words that her tummy was poorly and needed a rest at home, she refused. I said I had found the ‘lost’ DS games (They do get ‘lost’ now and again if you catch my drift). That swung it and she got up and fetched her bag and we came home.

When we got home she didn’t want the DS, she wanted to get her sensory fiddle toys out so she did. I had pulled her from school in the middle of ‘Tac Pac’, a sensory programme. She then insisted on eating her lunch that was in her school bag because that is what she would have done. I asked her to get changed out of uniform and she became upset and told me “No, we go back to school now”. I said school had finished for the day and asked her what she wanted to do “Swimming time” was her answer because that is what she would have done in the afternoon. She got teary when I said swimming was not an option because of her tummy. So instead we got a blanket on the floor and pretended it was water, we pretended to swim and she giggled and smiled. When we reached about half past three in the afternoon, she stripped out of her uniform and fetched her pyjamas and asked for a juice and a biscuit. This is her usual routine when she gets home at around that time. She has an hour on her computer whilst I cook dinner so off she went and switched it on and she was calm and relaxed, no more tears and tension because she had some how made it through the day that I interrupted by bringing her home and now ‘normal’ had resumed for her. Even though she was confused and upset, she coped and we got through it by almost mirroring what she would have done in school so she had some sense of ‘normal’ in her day and it made sense to her.

It might seem small and pointless to some, but breaking a routine can cause huge meltdowns, stress, anxiety, upset and anger. That fear of the unknown, unplanned and unprepared takes over and any sense of calm and reasoning just disappears. Two years ago she would have had to be carried out of class screaming and crying because she would not have coped with such a change that was not planned. It is something we work on at home and at school. At school there are things that you can not plan for – snow day, fire alarm or unexpected sickness. There are times at home that I throw in unexpected plans in to her day because they will happen in everyday life as she grows older. Not everything can be planned for so I push her boundaries and comfort zones. I make her try new things like horse therapy or ballet knowing it will trigger feelings of anxiety, stress, anger but also knowing in my head and heart that she is capable of change and can cope when given the right support and understanding. Routine is important in so many ways but so it breaking it sometimes.

Autism & Anxiety


Dear Anxiety

It has been a while since you and I fell out. Today you made me angry even though I was not your target. You see my daughter is 6 and she is autistic. It makes her day to day life extremely hard at times as she attempts to navigate a crazy world and find her place in it. It’s not helpful when you come along and add to the mounting stress she feels. I know you often tag along with your friend autism, you seem to be closely connected.

We had a lovely play date arranged with some close friends in a park we often visit. The school holidays throw her out of her comfort zone but she copes really well with planning. It should have been a lovely day. Plan we did, prompt we did, talk it through and off we went. Some days there just isn’t enough planning in the world, you just seem to grab her regardless. My beautiful girl was crying, screaming and kicking the seat in the car. She hit her little brother, she threw stuff she could get hold of. Refusing to get out of the car we sat there, her crying and her brother unsure whilst I decided on the next best step for all concerned. You had her, you were winning.

I wanted to yell and scream at you Anxiety. I really did. I wanted to rip you out of my daughter and stamp on you a million times for what you do to her. I wanted to swear at you and boy did I have some select words just for you. I wanted to cry, truth be told, because I am exhausted, overwhelmed and often feel out of my depth trying to do what is best for her. Trying, as a parent, to make her world as easy and understandable as I can whilst at the same time keeping her safe. I have to think with/about/for her 24/7 and when you decide to stop by it is a hundred times worse because she becomes ‘flighty’. Likely to run at any given chance and with her lack of danger awareness, it is bloody scary.

Instead I wish to thank you, Anxiety. You see every time something like this happens it makes me a stronger parent, ready to face you the next time you decide to gatecrash our lives. You know what else? With my help (and maybe a little stubborn attitude) she got out of the car. She had a few moments on the floor waving and kicking her arms in the air and I let her. Why? Because she was releasing you. She was angry at the feelings she was having. Deep down she wanted to see her friends, to go on the swings, to eat the picnic we took with us. After she started to calm I bent down and gave her a choice – go to the play day or get back in the car and go home. I was calm and fair, she knew either would be OK with me and do you know what, she chose the play day and after a few more minutes calming she had a great time. It was a lovely day after all. You are a pain in the backside Anxiety and believe me when I say I HATE you, I really mean it.

Thank you for attempting to take my daughter down today, you have shown me even at the age of 6 she isn’t going to let you win. She made a choice to put you to one side, remind you that you don’t get to rule her life. She was able to release her feelings safely inside my car and make a decision to keep going. I would say better luck next time but that just suggests I offer you seat on our next day out so instead I will just bid you farewell for today but no doubt you will be back at some point. We will of course be ready for you every time.

Yours Sincerely

Eliza’s Mum

The start of something beautiful

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There was a time I feared the day that Noah found his feet and mastered walking. I wondered how Eliza would tolerate the fact that a chunky uncoordinated toddler would then be able to touch her stuff. Sharing can be difficult for her, she has little concept of time and waiting but school have been amazing at helping her with that and ensuring lots of turn taking happened for all kids her age which in turn aided her social skills in general. From the day we came home with Noah I admit I pretty much forced him in to her life. In a previous blog I mentioned about how hard we prepared her for the arrival of him by role playing with a doll, letting her choose his name and making sure she was as involved as possible. I insisted on contact, sat him on her with one of us next to them (after years of witnessing how far she can throw toys when bored!). I also made sure she had quality mummy time so she did not feel left out or replaced.

Over the first few months she didn’t do much with him as he was so small but I would often catch her looking at him, stroking his head or just sitting by his Moses basket watching TV. Once he was a bit bigger and sitting in bouncy chairs she would often go sit by him, rock his chair a bit and even retrieve his dummy when he dropped it. If he cried she would yell “baby crying mummy” and tell me what she thought he wanted “he needs a drink” or her favourite “he needs an iPad” in the hope that she would score extra iPad time as he was clearly to small to hold one! When crawling started she thought this was great as he followed her like a little puppy everywhere she went. We were often ready to save him if she kicked off as he licked her books, chewed her dolls shoe or (God help him) touched the iPad yet she didn’t. There was the odd moment of “NO NOAH!!!!” then a smile or a giggle and it passed. That boy gets away with so much more than we do as parents. Her tolerance and patience towards him is wonderful. She entertains him in so many ways all we hear once she is home from school is him giggling uncontrollably at something she is doing. She actually WANTS to spend time with him, to interact and share, to be the big sister.

He walks now, bless him and his uncoordinated drunk looking style of movement. He is a big lad with crappy tiny feet, so top heavy. Secretly I think she is excited he can walk as she has started playing ‘chase’ but her own version (she shuffles off around the lounge and pauses enough for him to catch up but not enough for him to grab her before she is off again). She insists on pushing him on the swing in the garden or helping him bounce on the trampoline. She shares food with him (Eliza shares food with NOBODY!!! Food is her passion so this is huge). The bond they have is beautiful and I am so proud of both of them but I am extra proud of her. Autism makes her life so difficult sometimes, she can struggle with things that her 18 month brother finds easy already. She has changed so much over the last two years and I am overwhelmed by how she has taken to Noah and taken on her big sister role. Together they work, together they are a team. They love each other. I love them both.

She can’t talk YET…


This picture popped up on my phone this morning on an app I use that shows past posts to Facebook over the years. This was 2 years ago when Eliza did a settling in session at school in her transition from mainstream nursery to special school. She looks so young. She was 4 years old and spoke only a handful of single words, the most popular being “no” and “mumma”. I stared at the photograph for ages, remembering how different she was back then. PECS on the table (Picture Exchange Communication System). So many hours of my life were given to printing and laminating pictures for that. We had picture prompts all over the house including ones that step by step told you how to use the toilet and wash your hands. Thankfully all our friends and family were quite aware that if they needed to pop to the toilet at ours they were likely to see instructions on the walls informing them of the upcoming process!

When she started school we were unsure if she could read so I made tags for her bags. One side had her name, the other had her picture. I laminated them and put ribbon on them and attached them to her school stuff thinking even if she can not read much, she could see her face and know they are hers. They were great and many other parents asked about them so it became an ice breaker talking point during her first few weeks at school. We still use a routine board at home but she doesn’t really need it anymore. We are moving to just a whiteboard and written words only which is what school are now doing. You see just before her brother was born (he is almost 18 months) her speech started to kick in and it kept going and going and going. We have not used PECS for 14 months or more. Still likes visual prompts at school but I think more for habit/comfort.

                ID tags board

I look at that picture of her and her PECS and I think back to just last night in our garden where for a good 20-25 minutes she gave me (and the neighbours) a fantastic attempt at singing “Let it go” whilst splashing water everywhere pretending it to be ice. She sang! She tried so hard with all the words. A wonderful memory for me, one that makes me think back to that “specialist” who told us she would never speak and “don’t expect much from her”. Written off by him before she was even 3 years old. If I were to meet him now I would have some choice words just for him and I would show him the video of her singing. We only saw him once, after he decided she was nothing we chose to write him off and get a new Doctor. In a weird way I want to thank him. His appalling attitude and advice angered and hurt me so much that I was going to try everything to prove him wrong. I never stopped hoping she would speak, although at times I cried myself to sleep when the “what if she can’t” thoughts popped in to my head. I saw a beautiful post yesterday reminding us to always say ‘yet’ when talking about what our children can not do. I always did this, always. She can’t talk YET, she can’t ride a bike YET, she can’t read YET….. She can now do all of those things and she can sing. That picture has been my biggest reflection point to date.

NEVER EVER STOP HOPING, DREAMING, BELIEVING. It’s what keeps the parents going. Don’t be scared to push the comfort zones of the child now and again but know the limits too. Always add the word ‘yet’ as you never know when things will change. Then sit back and wait for that moment when you find a picture or a message from a little while ago that will smack you in the face and make you realize just how far you have come already. Hold on to that memory for when the next rocky period appears and you need a reminder of why you are doing this, why you keep going.