Scoliosis Awareness

Today, I am going to write about scoliosis. I am sorry I was meant to publish this on the Scoliosis Awareness Day which is June 24th but baby brain had me think today was the 24th so I will apologise now that it is late!

I have to admit I never really knew about scoliosis, I knew there was a condition that curved the spine like a ‘s’ and I thought it was because of how people sat throughout their life but other than that, that was basically all I knew. That was until about 2 months ago.

2 months a go I was attending BBGs regular consultants appointment, when the consultant was looking at previous reports and then checking the signs and symptoms on BBG, then she said a sentence I wasn’t expecting

o yes, there is scoliosis

I just panicked. There was this word that no one had mentioned before. I had googled EVERY sign and symptom and I swear next time I search hypotonia Google will just say ‘there are no new articles stop searching’ but this word I had not come across before.

I asked what she meant and she sat BBG up, she noted the curve in the spine, she noted that when you tried to move BBG she couldn’t get rid of the curve. Her shoulders weren’t quite right and her chest looked wrong from the front. I knew the chest looked wrong but I had thought this was due to the chest shape complications she has I never once thought it was linked to her back!

They haven’t x-ray’d BBG just due to the fact  her scoliosis is very noticeable and she is going through so many other tests they don’t want to x-ray to confirm what they already know. They don’t unfortunately know which type of scoliosis she has due to her having, muscular and skeletal abnormalities along with her age, however as some babies self correct their scoliosis, it is one symptom that is last on their list to worry about. This doesn’t mean scoliosis isn’t bad, it is and can be life altering however for BBG it is one of the minor abnormalities for her at the moment.

The next day was our physiotherapy appointment and I mentioned it to the physiotherapist who nodded and said yes she has got scoliosis, and again pointed exactly where the consultant had the previous day.

Now BBG isn’t getting any help or having any intervention at the moment for her scoliosis, this is due to her being small and still developing, they are hoping that it may self correct, this can happen but she has to be strictly monitored in relation to this.

As it is Scoliosis Awareness Month however, I decided to do some research into this condition, this condition that I was completely unaware of. I just want to thank Jocelyn Nowak from Janzen and Janzen Health Center who has given me the videos in the links below, they are short clips really explaining in more scientific, but parent friendly, language.


What is scoliosis?

Put simply scoliosis is just a twist and curve of the spine. The spine isn’t perfectly straight in a ‘normal’ situation but in scoliosis the spine is generally curved in either a “c” or “S” shape. Click here for a video demonstrating the difference in a normal vs a scoliosis spine.

What age do people get scoliosis?

So according to the  NHS website babies to adults can get scoliosis. Mainly between the ages of 10 and 15 it will start to develop. This shows that it isn’t just older adults that get scoliosis and that actually it is pretty much the exact opposite to that.

Causes of scoliosis

Most cases of scoliosis is down as idiopathic scoliosis, this basically means they do not know what the cause is. It is  worth noting that idiopathic scoliosis is not considered to be due to bad posture, exercise or diet. In fact some research shows that it maybe to down to genetics.

Sometimes the scoliosis can be due to other causes.

  1.  Neuromuscular Scoliosis – An underlying nerve or muscular condition will cause this, such as Muscular Dystrophy and cerebral palsy
  2. Congenital Scoliosis – this is present from birth and is where the spine doesn’t form properly in the womb
  3. Early Onset Scoliosis – this is an idiopathic scoliosis however will be present from birth to 10 years of age.
  4. Degenerative Scoliosis – this affects older adults and is just wear and tear from life and age.

Scoliosis Association UK has more information about the different types of scoliosis.

Symptoms for scoliosis

  • Pain in the back – generally only in adults
  • uneven shoulders
  • one shoulder or hip sticking out
  • visibly curved spine
  • leaning to one side
  • the ribs sticking out on one side
  • clothes not fitting

In babies to young children (Early Onset Scoliosis), boys are slightly more affected than girls and the curve is usually on the left side.

In older children (Adolescent Idiopathic Scoliosis) this then switches and girls are more affected than boys and the curve is usually on the right hand side.

If you notice any of these symptoms or are generally worried please see your GP who will test you and then refer you to your local hospital if they are worried.


Treatment

Treatment varies depending on age.

Babies are generally just monitored to see if the scoliosis corrects itself.

Babies and young children can also be offered a back cast. This is to be worn all the time and gets changed every few months as the child grows. It is a plaster cast so similar to the cast you get if you break your arm.

As the child gets older a back brace is generally worn. This won’t correct the scoliosis but will help prevent it getting worse. This brace is not made of plaster cast but plastic and is custom fitted. It does need to be worn 23 hours a day and is designed so that you can carry on your everyday life, you just need to take it off for bathing, swimming and some sports. This brace is usually worn until growth has stopped at the age of 16/17 on average. Janzen and Janzen have a brilliant page to show the use of back braces and also xrays to show improvements that these have made. Click here to see in more depth about back braces.

Surgery is also an option for children. For those younger than 10 it generally means rods being inserted either side of the spine to stop the spine from curving. The back brace may still be needed. In older children (older teens and young adults who have stopped growing) a spinal fusion can be done, this is a permanent solution using; rods, hooks wires to make the spine straight. It sounds bad but you will spend roughly a week in hospital, will be back in school in a few weeks and can play sports in a couple of months.

Specialists do suggest doing sports as this strengthens the core muscles and can help stop the curve getting worse. Sometimes specialists do advise not to do certain activities but this is not common and only in certain circumstances. Physiotherapy depending on who you talk to can help scoliosis or can’t. So until there is more conclusive research that is all I am going to say.

For adults the treatments are very slightly different.

The use of pain killers and spinal injections are used for mild cases of scoliosis in adults. Surgery and back braces are generally not used in adults except when the spine is getting worse or where your spinal cord and nerves are being irritated by the scoliosis.

Kate’s story and and Kaylee’s story are two cases from Janzen and Janzen which show how treatments work on various degrees of scoliosis.

Living with scoliosis

This was one of the main worries I had with BBG however after researching scoliosis, I have found that people who live with it can have normal lives and can do most things including exercise and most sports! There is generally no significant pain, and scoliosis does not mean you have another health problem. Once you stop growing the scoliosis will generally stay the same and not get worse. Obviously knowing you wear a back brace, even though they are designed not to be seen under clothes, can cause self confidence issues which is completely understandable. 99% of people aren’t happy with something on their body and when you have to wear a back brace for your problem I can understand why it can cause such issues.

I have found Scoliosis Association UK  and the Childrens Scoliosis Foundation are brilliant websites to get help and advice in regards to scoliosis.

Thank you to Janzen and Janzen Health Center again for your help and videos and please remember to wear green for scoliosis awareness month.


 

 

 

The darkness is looming

I seem to be having really good days and then really low points in my day. I know it’s my depression but it is something I am really struggling with. 

I seem to wind myself up so much that the slightest thing can bring me to a point of just wanting to walk out the door. 

Little things that I used to be able to cope with seem like they are weighing down on me. I have started to let dad do the washing, this is something even in my darkest depths I’ve always been able to do. I have lost my appetite,little things are winding me up when they never used to. I have started to slowly retreat from talking to Dad as I just don’t want to, I find it hard to talk to him, this is winding him up but I just can’t at the moment. There’s no reason, internally I’m screaming at my self to talk to him but my depression stamps on my tongue so I can’t. 

 This dark unspoken cloud is consuming me. I know I am not me, I know I want to get out but every time I try and find my way out it gets heavier and heavier, it is starting to choke me and weigh me down. I just need to come out of it but I can’t seem to do it. 

I need help but at the end of the day I also need me to understand why this depression gets so strong sometimes! If I can’t figure that out then I won’t know how to stop these phases from happening. Don’t get me wrong I am always depressed but sometimes it goes from a manageable depression that I can keep ticking over, that doesn’t really affect my life drastically and swings right round to it affects everything in my life and I am not me and I am not able to do normal everyday things.

Maybe I am just stressing at everything, maybe it’s my body and mind saying I am stressed with everything going on, that it’s not the depression it’s just a mask of me not coping with BBG being ill, being tired from the constant battle to make sure MO’s world is safe and understandable.

Maybe I am just tired so my depression that is always lurking, that’s always there waiting to pounce when I’m weak, has decided to come out and drag me further into the pit of not coping.

This ramble seems to really be a ramble, it really isn’t a blog post but at the same time I started this blog to get things off my chest. So here’s everything on my chest in words, here’s all my confusion and struggle in a blog. I am just really struggling at the moment and I don’t know what to do, however writing it has helped get it out my mind.

I’ll leave you with a quote from the Croods that really helps me explain depression

We weren’t living, we were just not dying 

Pretty much sums it up

Colchester Zoo Time!

We have annual passes to Colchester Zoo as the family in particular MO, loves animals. MO’s favourite is the Komodo dragon, BG loves the wolves and SB well he is at the stage of hating everything. We brought the annual passes as it works out if we went 3 times in a year we have got our money back. As usual on the day tickets are more expensive then pre ordering but below are the prices for gate tickets.

Adult – £22.99

Child – £15.99

Senior – £20.99

Disabled – £1150

When you get there, the car park is huge with various zones. 

To make entering the zoo quicker, if you have annual passes you walk in the middle door and go straight through to the scanners and straight into the zoo, for those that preorder there are machines to pick up your tickets before you get to the main entrance and once your tickets have been collected you can also take the middle doors. They then have numerous tills on the left and right and these you will have to queue for. I did notice a Tesco Clubcard payment only side today and on the way out it looks like during school holidays there is a whole different kiosk outside by the disabled car park for you to use. There are plenty of signs on the floor and plenty of friendly staff to point you in the right direction. The queuing system sounds very confusing but actually it is the easiest and fastest queuing system I have ever been in. 

If your like us and your kids moan the whole way round as they want to go to the gift shop, in the main entrance before buying tickets there are 2 shops. The left hand side is child friendly gifts, so teddies, pens and cups etc and then the right hand shop is more for the adults, decorations and ornaments etc. We got a giant bearded dragon soft toy for £15.99, if you have an annual pass you also get 10% off the shop. The souvenirs are pretty much on par with similar day out attractions. Today we brought their gifts before going into the zoo and shall do that again! 


Giraffes and bearded dragon both amazingly cheap for a day out gift shop

Once you have been scanned through there are toilets to your right, however these are really busy generally as they are the first ones people see. There are plenty of facilities around. My favourite ones are the ones situated by the koi carp area and the new chimpanzee enclosure, they are the biggest, and their disabled/child changing area is better then the other toilets. All toilets work and are cleaned but they get used a lot so they are the 2 I personally would recommend. 

There are various play areas around. However I don’t really like using them as they are all high climbing frames and slides. Dad took the kids to the one near the giraffe and elephants today though, so I could feed BBG, convienantly there are toilets located next to this park. This park had rubber chippens as the flooring so wasn’t really wheelchair accessible, and not very pram friendly. Due to MO needing a lot of supervision, especially when it comes to play areas, we tend to not go to these at the zoo as they are either wet from rain on the low season or crowded by children on the high season but the kids really liked playing on here today. They are all generally zoo themed which is really nice. There was a tiny little area by the giant tortosies which has a wooden digger to climb on and musical instruments and even though it’s tiny compared to the others, my boys and BG loved it! Especially when Dad decided to get in the digger with them!


There are lots of picnic areas around and these are generally shaded which is very handy. If you would prefer to eat indoors, there is an indoor picnic area, this is located by the customer services house near the entrance of the zoo. There are restaurants and food places throughout the zoo, one is table service only the others are all what I call grab and go, grab your food and eat where you can find a seat. This ranges from sandwiches to chicken wraps. Again the prices vary but generally are on par with activity day out centres. 


Picnic time!

Pretty much every 100metres there is some sort of bench and most are shady which is lovely on a hot day, when the kids need to rehydrate every few steps but refuse to drink while walking. 

Time to rehydrate

What I really like about Colchester Zoo is the fact there are activities for the kids to do while walking around, can you hang on a rope for as long as an orangutan?, are you as strong as an elephant or as fast as a cheetah? These are fun things to do around the zoo and actually it gets the kids doing things while walking around and they start to remember facts. My kids love the are you as strong as an elephant activity, every visit we all have to pull the rope and laugh at the fact we are not! 

 

Taken last year but a photo of the family seeing how strong they are. 


Along with the different activities there are also photo opportunities with the children and adults being able to sit and pose next to large animal statues. Beware though as some of the statues are made of metal and on a hot day will be extremely hot! 


Then last but by no means least the animals! These can be seen either by walking around or you can get the Madagasca Train, this we didn’t go on today but beware you have to leave your pushchair and there is only space for 1 wheelchair. The train is brilliant though and the driver will give you a tour giving facts and details about everything you pass. If your walking and see the train coming don’t forget to wave at the driver!  

As for the enclosures it seems like every time we go there are new ones being built or old ones being updated and changed.  Last time we went the chimpanzees weren’t in their new enclosure, today they were but they weren’t outside, hopefully next time we go they will be 🙂 another favourite for our children is the African plains enclosure, today we saw the baby rhino chasing the ostriches which was lovely to see as the animals weren’t just pacing backwards and forwards. The enclosures also are generally very wheelchair and children friendly. Some weren’t due to steep slopes but these were clearly sign posted. Also a few of the indoor enclosures don’t allow pushchairs, like the butterfly room, but I can understand they don’t want the pushchairs hurting the butterflies. Do make sure you take a trip under the sea and see the sea lions, their enclosure is also the entrance to the orangutan enclosure and the outside enclosure is spectacular to see. 

As you can see from the photos below even BBG in her pushchair could get up close to see the animals. She loved the koi carp tanks and seeing the elephants for the first time ever.


Mo even managed to hold a giant Africa land snail much to his delight in the discovery centre. 

To get round the zoo is very easy, just follow the yellow line, it will take you around to see all the animals. Alternatively find your way round using the map provided with your tickets, or the sign posts dotted everywhere. 

There are also animal talks, we tend to avoid these, not because they are bad but because MO can’t handle the crowds. One thing we wish we could do is the feeding of the elephants and giraffes but MO wouldn’t handle the amount of people who do this. When seeing how it is operated, everyone always gets to feed the animals, but it is very fast paced and for my autistic boy he would probably not cope with this. We will wait for him to be old enough to do an experience day, he has already spotted the Komodo dragon experience day and can’t wait to be old enough. 

We also found a nature reserve which was lovely and relaxing. The kids loved looking around and seeing birds and insects and trying to find what they were in the hanging books planted around the place. It was just the right calming end to the day.


So if you want to learn some conservation and see some animals, in a beautiful zoo I would highly recommend Colchester Zoo. I can see why it was ranked 8th best zoo in Europe and 2nd best in the uk by trip advisor a couple of years ago, I can’t find the latest list but I can’t think it would have gone down the list much if at all. Just beware of the slopes if going in a wheelchair.

All views are my own, no money or tickets were exchanged for this review.  

Playtoz mini stacking hoops review

While I was at The Autism Show we cam across the Playtoz stand, as mentioned in my ‘Autism Show Run Down‘ blog. 

Playtoz support centres where adults with learning and physical difficulties hand make some of their range making it completely unique. All of the toys are tried and safety tested and they quote in their brochure 

We take safety very seriously, offering the only EN71 toy safety standard tested Treasure Baskets in the UK. 

All our quality resources are carefully made and checked to offer maximum peace of mind

I have been looking at these stacking hoops for a while as I love the fact they help adult with disabilities while also being a unique way of bringing sensory play to my babies, although I was hesitant due to the safety aspect, however when I was talking to Playtoz I was reassured and decided it was to time to take the plunge and I was so happy I did BBG hasn’t stopped rolling around playing with the different hoops 


They come on 2 sizes, the smaller size is suitable for 10 months+ and comes in a Marmalade (one we have in this review), Pistachio and Purple. The larger size comes in Marmalade and Pistachio and is only suitable from 3 years+.

BBG has loved playing with the hoops. Her favourites are the wooden hoops as she is teething at the moment but she has started to love the hoops which are made of different fabric squares. The hoops are going in her mouth and she is feeling them and touching them. Her face lights up when I take them out of their handy storage bag.


They are a brilliant tool to use while doing physiotherapy with BBG. I sit her between my legs and  make her secure. I then put the stacker and the hoops in front of her and let her take the hoops off one at a time while sitting, this helps to strengthen the core muscles. 

With the hoops being all sizes and textures it als po helps with her grip. It means that she can grip different sized hoops and practise doing this from various distances around her, and teaching her how to grip different materials and textures. 

In a world full of plastic toys and plastic feeding equipment, this wooden sensory stacking hoops really stands out and BBG loves them. 

The RRP for the mini are large stacking hoops are £33 and £50 which is a lot more then your average stacking hopes however they are made ethically and environmentally resourced materials including being unique by the fact each is hand made. Unfortunately to do this it does cost a lot more then mass produced plastic alternatives.

This post is not sponsored and all thoughts are my own. I genuinely loved the product and wanted to review 🙂

My understanding of autism spectrum from child to adult

I’m not going to lie, when MO was diagnosed with High Functioning Autism with possible Sensory Processing Disorder I freaked out a little. How will he cope with school as he grows up? Will he have friends? How will we cope? What about when his older? All these questions went running through my head and other than the basics we had no idea where to turn. So I decided I will research and talk to people and see if I can do a blog to help other people in a similar situation. 

I am not going to go through th diagnosis stages as from what I have heard it varies from region to region. Infact once you have the diagnosis the help varies but at least I can give some websites and a rough guide to help you find your feet. The most common thing people said was unless you know what your entitled to you won’t know what to push for and ask about as you WILL need to push.

Disclaimer this is just the research I have found and people’s experiences, it is not definitive and may change from region to region.

General feelings

So first thing is first. You are most likely going to ‘mourn’. This isn’t because you don’t love your child any less then before the diagnosis, it is the fact you are mourning for your child, for the ‘easy’ life they would have had, for the ‘less worrying’ future, yes as a parent you will always worry for your child that’s human nature but when you have been told your child is on the spectrum this whole different layer of worrying comes. I felt silly saying I felt like I was morning for MO and kept it quiet but you do go through the 5 stages of grief, and it was only when talking to other parents openly and honestly when researching that actually this is quite a common feeling. So do not feel like bad parents for feeling this way, don’t feel alone as most of us if we are really honest with ourselves have felt that way. 

I was also told as a parent you are the only one who is going to fight and shout and push for your child. Make sure you do this. Make sure you get the help you need and do not feel bad about the fact that sometimes you can’t cope. Whether it be because your child has been flapping his arms all day and it’s hot and you can’t get him to stop, to a whole day of autistic meltdowns that can get you physically hurt or even down to just not being able to cope with the fact you will always have to fight and your just tired. This is why it is so important to get help and seek support groups, so that you can talk to people who are going through the same thing as you.

General Information 

A brilliant resource for general information and basic rights that I would highly recommend going on is The National Autistic Society. It goes from first diagnosis right up to concerns about employment as adults. It is a really good general website to go to. In my area I also have Autism Anglia who give more localised information, so find out what your local organisation is as they will be able to help more about local events and groups. Another website and magazine I would highly suggest is the Autism Eye magazine, it gives different articles about research that’s happening, different articles to help you through different situations that will arise and advice on things such as different therapies and natural treatments.  

Schools and preschool 

MO was diagnosed in reception, so this next part to be honest is just from research and talking to other people about their experiences. Once diagnosed a lot can happen if your child isn’t old enough for school and it is done via your health professional. You could be referred to a specialised team who help with behaviours, so they can come to you and help with toilet training, sleep training and general behaviours and help you and your child to work through different situations. So advice on what to do if your child is bouncing all over the furniture, they are there to give advice. In my area it is NHS funded… this may not be the case everywhere but even as toddlers there are people to help you. They are professionals who deal with these behaviours all day, every day and so will be able to help and advise on how to help. One mum I spoke to advised that she was struggling and just talking to her local team she was able to really understand why her son was doing certain behaviours and with a slightly different approach she managed to help and decrease the behaviour, so where her son was breaking things everyday she got taught how to speak positively to her son, tell him the chairs are for sitting on, instead saying ‘No’ ‘stop’ etc. She also learnt more about why he did the behaviours and so when she was advised on the different technics it made sense and so although it was hard to adapt her parenting to start with she is glad she persisted as actually it made her and her sons life better. Isn’t that what we all want for our child? 

Once at school, each school will have a Special Educational Needs Coordinator (SENCO), talk to your SENCO and let them know what’s happening and your concerns. Once we had spoken to our SENCO we had to then go to one plan meetings and these have to be done regularly and show improvements or whether there aren’t improvements. If there aren’t improvements or not enough improvements then you can start talking about an EHC plan, this is the new statementing system. In basic terms this is a plan for your child, so one to one needs etc and these are given and funds provided to the school through the Local Authority. There are lots of laws and regulations in regards to EHC and the processes and what the schools have to do and where I am not legally trained and don’t know the system well enough I am not happy to blog about this process just in case I came across the wrong information, however this is where this blog is handy, if you are going through this process and you really don’t know what’s happening then get in contact with IPSEA , they are legally trained volunteers and can help in legal matters and rights when it comes to schooling.  

Once you have an EHC plan you can start looking to see whether mainstream school is right for your child. This is a very personal choice and something you would have to research but there are lots of different schooling options out there and it is definantely worth looking into. 

  • Mainstream school 
  • Autism unit – a large school may have an autism unit, this is a mainstream school with a specialist unit. Some people I have spoken to have said their units just means there is a block with sensory rooms and quiet areas so that in a stressful situation the children can walk to the unit. In other schooos the unit is where the children do all their classes and they have lunch with the main stream school. It really varies but take a look at the local schools around you and decide if this is right for you.
  • Special Needs schools – an EHC plan is needed to attend. Depending on area the nearest school could be quite a few miles away. In my area there are special needs schools just for autism or similar needs and there are special needs schools which help with physical disabilities as well as autism.
  • Special needs school with boarding facility – we really loved the Gretton School here you need a diagnoses of Asperger syndrome or high functioning autism. It is just a school for this area of the spectrum which is really lovely to see such a specialised school, they also board Monday-Friday if this is needed but all this depends on your child’s needs, there is also places like The Hesley Group that again offer accomadation for learning in a safe enviroment.

Most special needs schools also go from primary to secondary school so you do not need to worry about the transition which is a positive. You are also safe in the knowledge your child will be fully cared for by people who fully understand their needs while also having the equipment for them. 

Hopefully this gives you a little understanding about what is out there in education for your child that there really is a good mix out there to best suit your situation. Every child is different which is why having such varying ranges of schools gives you one less worry as you can really find the perfect education for your child, not just be told they must go here. 

One of my main concerns was for college and beyond. I understood schools are fairly well equipped but worried for the adult section of MOs life. This is where I loved going to The Autism Show, seeing so many stalls with different colleges was fantastic. We even spoke to one college where one of their students has just been accepted into university to do art. There was another college who are between 2 universities in Sheffield and so they can still get the university feeling while being in a safe and secure school. Just walking around seeing that there are collages around that give the further education really helped settle my nerves about the future, that just because MO has autism doesn’t mean he can’t do something with his life. I spoke to a lovely parent who’s son goes to a specialised college, they were told due to his autism and other issues he would never be independent, he was hesitant to send his son to the college but decided he needed to. At the college they have a little flat style area where they learn basic life skills, cooking and cleaning as well as doing their course. He now admits that it was actually the best thing to ever happen to his son. He will still need assisted living but he has independence.

Support for parents and young careers

Your school should be able to refer for you to get a support worker. Ours is actually provided through a charity, but our support worker is there for any questions we need but will also have information on different support groups for you and even your other children. They will also help explain what is happening and why and what the next steps are. They basically do what you think they should do…they support you. Without our support worker I would never have known there are 2 different groups for parents to go to talk to other parents going through the same situation, I would never have known there is a group BG can go to and SB can go once he starts school, to have some time to be kids, to have fun and actually make friends with people in similar situations. They will also be able to guide you to different funding sources. They also told us about different courses we can attend locally at our closest special needs school to learn more in regards to ASD. They are a fountain of knowledge. We didn’t know we were entitled to one until someone mentioned it. Again it maybe called something else, someone I spoke to said their support worker is actually based in the school, another I spoke to mentioned their support worker is called an extended services worker and the list goes on but basically get your worker they are on your side.

Non government therapies and support 

So I have generally spoken about the NHS and schools that have government funding. This is not the only help out there! With the lengthy waiting lists getting help or finding adequate help can be an issue. So I have found a few places that could help you. 

Beam ABA Services – this service is all about Applied Behaviour Analysis (ABA) therapy, they can do online or home based programmes and Taylor make the therapy for your child. They are available in London, Manchester and Birmingham. 

Intergrated Therapy Life – this company provides speech and language therapy. For MO he does need speech therapy due to mispronouncation of words however he has not been referred as of yet due to the waiting lists and budgets of the NHS and so a service like this is perfect for parents in similar situations. They come to your home and do the therapy in the child’s own safe area.

Autism Links – this website does what it says in the title it is

Dedicated to making those helpful and sometimes vital links 

It gives to local events, news and social media and a whole host of other links. 

Playtoz – The owner Sue Gascogne is a play and creative arts therapist. This particular co pang is based in Essex but it is a good reminder to check your local therapy centres.

Sensory and Equipment

There are hundreds if not thousands of inventions to help children live an easier life with autism. 

You can get special plates to help encourage eating, pencil aids to help handwriting, fidget aids, weighted blankets, lights, the list is endless. Each child will react differently to different sensory equipment. There are a lot of toy libraries around which lets you try items before you buy or even just so you can switch and swap toys easily without shelling out £100’s on a toy that doesn’t work! 

We got our equipment at home from Learning Space, they were really helpful as I could ring up and talk about what I thought was needed, and MOs needs and they advised a much better list, all for the same price. I would also highly recommend Space Craft who was recommended by a fellow autism parent as was Special Direct. There are lots of other stores and just make sure you check reviews before ordering. 

Since having sensory equipment MO’s behaviour has been so calm. There have been instances where he has screamed and kicked and thrashed but I can now wear short sleeves as I don’t have marks to hide from his meltdowns. It has been well researched and documented that sensory toys help and depending on your budget they range from next to nothing to £1000’s. 

I’m also waiting to test out some fragrance products to use in the house from Fragrance and Autism, they researched and researched and found a balance of scents that should in theory help people enhance their lives using fragrance. So I will let you know once I have tried out the products. 

Adults 

I have left this section to last. Mainly because it is the hardest one to write about as pretty much it is negative news. From research and talking to adults who are on the autistic spectrum there isn’t a lot of help out there. It looks like once you leave education there is barely anything. 

I saw lots of homes and assisted living charities where they advertise it as a home away from home, but not all autistic people are suited to this. If your lucky you maybe able to find a support group for being a carer however for the actual adult dealing with autism there is next to no support. I can’t find any charities or organisations unless like stated it is for assisted living. 

You also have a whole category of Adults who have just never been diagnosed until recently as being on the spectrum and although it was around it wasn’t as well known and as well understood ‘back in the day’. I spoke to a lovely lady named Louise who is in this boat. She was diagnosed around 6 months ago. She was treated for depression knowing that it wasn’t depression, it was only by a circumstance that she realised she may have been on the spectrum and got diagnosed. The diagnosis still took around 18 months but unlike children she has found no support. She is now paying for counselling to be her support. Although she has lived with being high functioning (Asperger’s syndrome) it has completely changed her outlook on herself. 

I asked Louise for a piece of advice for anyone who thinks their in the same situation and she said 

All I’d say is if you have a incline you may have go get help, diagnosis doesn’t change you but helps you understand yourself more and re evaluate your whole life

That alone screams out that there should be a support system in place. If you know or work for an organistion that helps newly diagnosed adults or even adults who don’t need assisted living but do need help please get in contact.

Doing this research has made me realise for the next 15years MO still has access to as much support as we all need, I will use it so that I can get him ready for life without support. Teach him how to calm his meltdowns and teach him social skills mainly so he can have friends if he wants friends but also so he can get that job that his OCD tendencies make him perfect. I do however pull positives from the 5 adults I spoke to, 4/5 of the adults living with being on the spectrum have a job. 2/5 have a family and the other 3 don’t want one/feel ready to settle down. 

Being diagnosed isn’t the end of life. Your child or even yourself will be ok, it may just be a slightly different approach To life then planned but different isn’t bad it makes the world brilliant. 

Thank you to everyone who spoke to me and inboxed me and thank you Louise for allowing me to quote and name you.

4th baby I know everything right?

When I was pregnant with BBG, every appointment or stranger or friend and family member would find out it was my 4th pregnancy and just say ‘o you know what your doing then’. Deep down I was internally screaming 4!!!! 4 babies I may know how to do pregnancy but 4 children is a whole different world to 3… but I knew I could do it. Babies although are all different they generally do the same things, need the same equipment. I just needed to get my head around the fact I had to do the newborn stage and lack of sleep part again! 

Around 30 weeks pregnant when we knew BBG was going to be ok we started to fully buy equipment. The summer sales came so while I was still getting my full wage and not maternity pay we  brought the bouncers, the toy tables, the things we would need for the next year. We even had a friend show us this really cool purée making machine. Which we instantly brought knowing Dad wanted nothing but organic allotment veg being fed to our baby girl. I would feed the milk and he wouldn’t feel useless as he would grow the solids. 

This purée set seemed perfect and convienant for a family of 6. 

I did buy a couple of pouches of baby food just in case Dads vegetables hadn’t grown quick enough. I just made sure it was organic so keeping with what Dad wanted. 

As you know things didn’t go to plan. I thought by now, 10 months, she would be onto complete solids, eating a little plate of our dinners, having fruit sticks and fruit puffs for snack. I never imagined I would be in the shopping aisle feeling the pouches to see if they feel extra smooth, no texture, I never thought I’d be hesitating whether to try a different make or go up to the next stage food. 

The only puréed foods she tolerates 

I never thought I would realise not all 4+ pouches are smooth with no texture, that the pots of foods are generally thicker then the pouches, that some flavours even though are in the same range she can’t tolerate – pea pouch from Ella’s kitchen is too thick, I never even thought about it before. That no matter how much you boil veg and mash it and purée it, those lumps will still be there. 

I never realised that some babies can’t physically sit and eat and that it would take months of encouragement and when she finally eats in the high chair you get so excited only for the next day being up right and eating is back to being too much.

 

I never thought I would have people saying my baby is just fussy or lazy when I explained why my 10month old is still having purée and explaining that it’s all she can eat. That I would have to explain that the doctors although are talking about tube feeding in the future, are trying to figure out why she can only eat purée before making a decision on what to do. 

I never knew I would carefully choose clothes, working out how easy they are to take on and off as she is like a baby doll when getting her dressed, she does not help in the slightest, no gentle push reflexes when her hand goes in a sleeve just a floppy hand unwilling to help. I never knew that where she doesn’t move a lot we would still be dressing her in slighter warmer clothes then people may think. Instead of being just in a vest in this heat wave she is in an outfit – doesn’t seem much but it’s different from the first 3.

I never realised I would have to think about how to have the pushchair, that it needs to be at a certain angle with the feet up for support and even then she won’t be able to sit properly in it. I still can’t figure out a way to have her in the pushchair fully supported and sitting comfortable. I see the looks and hear the comments of people that say my baby is sitting weird and why haven’t I moved her so she is comfy and all I whisper back is she can’t sit properly but wants to see the world so I can’t lie her down.


Never did I expect to have to bath with my baby at 10months old. That in 10 months she has only splashed and moved in the bath once. That it takes 2 adults to bath her even if I don’t get in the bath with her, one to hold and one to wash. That at 10 months she still can’t play with bath toys, that her greatest joy in the bath is being floated towards the bubbles and feeling them pop on her skin.


Yes she is my fourth baby, but it is a lot harder. No textbook helps, no child before helps, when the professionals just say ‘we don’t know’ it doesn’t help. I feel like a new first time round mum, completely overwhelmed and learning as I go but I did ok with the others once I knew what to do and I will learn with BBG.

Crazy hot week

This week seems to have flown by! MO has been struggling with the change of the routine as Dad and I have had appointments for BBG, which has mucked up his routine. This mixed with hot, wound up children and parents have not been good.

Everyday at home MO has really been struggling, yesterday I videoed just a snippet of a small tantrum, I had someone say to me they don’t believe in autism and the autism meltdown so I tried to explain and it just sounded like a bad temper tantrum… so I decided to film… but the only problem is as I was needing to give him my attention fully when it was a bad meltdown I didn’t really help fighting my corner. I guess I feel like I had to stand up for my son and other kids and adults out there. I wanted to show this person how tiring one meltdown can be how these meltdowns can happen all throughout the day over literally NOTHING sometimes. That these tantrums put my other kids in danger of being hurt let alone MO. I guess I just wish I could properly vocalise how I feel.

Little picture 

We went to GOSH and The Autism Show which I have already written blogs about. However it spurred me on to write a more in depth blog about living with autism and what services are available. I’ve already spoken to a lovely lady who was diagnosed 6 months a ago as an adult and shall be discussing these issues too.

I guess I thought everyone nowadays knew about autism and realised that autistic children are different but were understanding, until this lady said about how she doesn’t believe it. I will say I am more then willing to educate people on my experiences with autism and help by pointing them to certain resources, as I completely understand people may just not know how it affects people’s lives. I guess that’s why I want to do a more in depth blog to help people on the journey and help people understand…. I don’t know if it will help but I have to try.

Anyway, today Dad took MO for some father son bonding time. To try and relax him and get him some well needed one to one time. He absolutely loved it. When I got home with the others he was so animated at telling me all about his adventures and what he had been up to. He has a Nick Baker bug kit so he is currently feeding ladybugs and we will release them back where we found them yesterday. MO also loved counting bees for the Great British Bee Count and inputting the data into Dads phone.


Anyway the kids are in the pool splashing and keeping cool but it is time to get them out ready for a Father’s Day BBQ at my parents house! Shall talk to you all later 

O and I have some good news too! I am now the official brand ambassador for Bundle Bean! Check my Instagram and twitter page for discount codes 🙂

My war on depression

I decided I wanted to highlight a huge taboo that is in this world. People aren’t really allowed to openly admit they are depressed without feeling pressure to explain either why their depressed, or that their coping etc. 

I have had depression since my teens. Mainly due to various events happening but also potentially because my brain chemicals aren’t quite balanced. It’s not the first thing I tell people and in fact it is probably the last thing in the world you would expect me to come out with. 

I wear a mask and my husband calls it my war mask, as I get ready for the day I paint my make up on, my war mask, my coping strategy. 


It may sound ridiculous but I feel that I can hide away my true deep darkness. I can put make up on and hide the darkness under my eyes that show I don’t sleep well, I can put mascara on to make my eyes appear bigger and brighter and I can cover up my skin that is messed up from years of acne and my acne scars and to cover away the past comments about my skin. 

I guess it just makes me more confident, it makes me feel like I am not me… it’s quite hard to explain. 

In the past I have used food as my mask, I would calorie count and make sure it never went above a certain point, I slowly but surely changed and after SB was born I completely flipped and can’t get enough of food…  I think it’s where he was premature and my milk didn’t come through straight away so my brain was saying it’s because I wasn’t eating properly and now I’ve never been able to control it again as I am scared in case I use my food as my mask again to cope with depression

Life with depression is very much an act… to function you have to act, you have to put a massive smile on your face. Having converasations is tiring, getting out of bed feels like a marathon and then you have to act through the day that you are fine… it’s exhausting! So putting on my war mask makes me feel like I am someone else. I am still exhausted but it’s like I am an actresss in a play the only difference is that it is real life. 

Depression shouldn’t be a taboo subject and I really wish more people would open up about their experiences. In my deepest depths of depression, people knew I was struggling but they didn’t know how much I was struggling, if I wasn’t so scared about reactions then I may not have got into such a dark place where I couldn’t find a way out.

 We need to break this taboo and I think we slowly are, when BG was born there was next to no support for pre and post natal depression whereas now there is a whole team just to support you. Thanks to blogs people are now starting to open up about their experiences and in fact a lot of people I know will now open up to post natal depression and so now I hope to start to see this migrate to talking about depression and about how it doesn’t choose who it hits and sometimes it is the people you least expect to really be struggling. 

If your struggling then please either ring or contact the Samaritans or go to see your doctor. 

Autism show run down

We were lucky enough to go to The Autism Show at the Excel centre in London. The show is travelling around the country however so don’t worry if you can’t make it to London. 


After a long day in London the day before with BBG we were back up today to research for MO, I was rather tired to say the least! 

There were 2 areas in the middle of the hall where various talks were going on and this was quite cool as you were given headphones to use while you sat and listened to the talk. There was also a large theatre to the back again for different seminars. The talk list was outside the theatre and was easy to find.

There were also individual consultant rooms to talk to people in private and get information and help and these sessions you could book on the day. At the London exhibition they were to the left of the entrance. For those that need quiet time away from the hustle and bustle there was also access to a quiet room. If we had taken MO, this quiet room would have been used an awful lot as it was quite crowded and sometimes a bit too much. The Autism Show understand the situations and have provided areas which was lovely to see. The eating areas were also relatively quiet and had very plain decor so again quite a good place to go to escape the busy ‘market area’. If needed there is also a very spacious sensory room. BBG loved this area and it really showcases what sort of equipment is available but also what really works in a sensory room. Just a good place to have a sensory session unfortunately it isn’t super quiet so if you need complete quiet to calm down just pop into the actual designated quiet room.


There were a variety of stalls and all of them genuinely had different things to demonstrate or information to tell you. There were a variety of stalls with sensory toys ranging from all singing all dancing fibre optics and projectors costing hundreds if not thousands right down to stress balls costing a couple of pounds. Each one I wanted to buy a lot of things from so have quite a few catalogues to go through and make a wish list. 

All the stalls I came across were so friendly and really were able to point you in the direction of what would better suit your ASD needs which was really helpful. On one stall you can even sit down and try some calming toys out which I found really helpful for when we are thinking of equipment to fundraise for MO and also BBG, both need sensory equipment but for different reasons

One stall we did visit was Parallel London which was all about a sensory fun run which I am thinking of signing us up to do! Take a quick look at the stall as it is something really fun looking for all the family.

I am going to list 9 stalls I would highly recommend to go see or at least to go onto their websites to check them out. These have been listed mainly due to the fact I had never heard of their products or services and was really interested seeing different equipment being demonstrated. I would highly recommend seeing all the stalls as even the projector stall was fascinating as they now go all up walls and one stall had an amazing knife and folk set that may actually get MO to eat! So please do take the time to talk to everyone. 

1- Abilia U.K. – they were demonstrating their new Memo Day Planner which doesn’t sound very new and you would be right, however this one is electrical. It is hard to describe but there are LED lights ticking down the time and past activities that you have written down. This would be perfect for MO as he is very precise so the seeing of the timer going down would help a lot with him knowing exactly what is coming up. They also have other equipment to show and this is basically just an old trick rejuvenated for the modern world. 

2- Integrated Therapy Life – this stall is all about speech therapy and tailoring the therapy to your needs. They were also very friendly and happy to talk and help with questions. With this I would also highly recommend Beam ABA they do a therapy course in regards to behaviour and again come to your home and come up with a tailor made plan to stop negative behaviours and enhance the positive strengths that your ASD child has and again has a wealth of knowledge.

3- Filisia-interfaces– they are demonstrating their Cosmo product which was a finalist in the 2017 Best SEN Award. BBG had a little go as did Dad. With their product it is all done via an app on your tablet and this then hooks up to what I can only describe as 6 pods. There are various games and fun activities to do. The pods are extremely tough and come with a battery with a very long shelf life. The Cosmo is easily stored and transported as unlike some sensory equipment it really isn’t bulky. 

It is a lot easier to explain by showing pictures but I wish we had these at home as I think it would do wonders here!

4- IPSEA– these people are so helpful when it comes to discussing education. IPSEA is a charity run by legally trained volunteers and offer training courses but are also a huge support team to help with the education sector when it comes to SEN children. They can help with your rights and also templates for writing letters and have a free telephone support service. If your just starting the process of being statmented then these are people who can really help. There are also 2 solicitors who both specialise in SEN needs and again are extremely helpful. SEN Legal limited Were also selling a book to really help parents through the mind field of special needs and legal entitlements. Look out for Match Solicitors who also specialise in SEN law and will be able to guide you in the right direction. All 3 are extremely good to talk to and all 3 will be able to give you help, I believe when it comes to legal entitlement you need options and to go with whoever you feel the strongest connection with. Hence why I have put all 3 legal advisors on this point. 

5- Angel Sense– this is a stall with a brand new type of mobile phone which is designed specifically for Autistic children and their families. It has a real time tracking service, a late departure reminder and the bit that I personally love, a function where the parent can call the child and the phone automatically picks up so that you can call and listen in to make sure they are safe. This is a massive worry for me as a parent that MO will get lost or be targeted so knowing this phone exists will ease my mind slightly when he gets old enough to venture out by himself.

6- Hesley Group– this stall is mainly for teenagers however I loved the Hesley Group as they gave out a very good book called ‘Next steps a guide to transitioning planning’. Most ASD children find change hard so this book I am hoping will give ideas and help with change. It is mainly based on the transition from school to school but I can see it working for other big steps and just for this book it is on my list.

7- Playtoz– this stall is a normal sensory stall and although I said I wouldn’t mention these stalls I am because to the right of the stall there are a few special sensory toys and these are hand made by adults with learning and physical disabilities bringing a uniqueness to each item. We have got an orange stacking hoops toy that I will be reviewing next week once BBG has had a proper play with it but it is again something slightly different. We spoke to Sue the owner and she is also a play therapist so again someone with a wealth of knowledge for your play questions.

8- Musii– this is on my list as it is more for schools or playgroups however it is just fun to play with. It is also quite fascinating the way it works and helps the ASD children experience sound, light and texture.

Last but not least

9- Tough Furniture Ltd– as their name suggests it is just tough furniture. Unlike what I thought tough furniture would look like it would actually fit into any home and no one would generally think it was specialist equipment. Tough Furniture has been around for 25 years and I had never even heard of a domestic company who designed furniture like this. We had a very In Depth conversation and actually learnt that their beds can withstand 1 tonne! The tv cases are made of the same material riot shields are made of and basically every care has been taken for each piece of furniture. When looking at the prices their not actually too expensive, yes more then ikea but not far off Harvey’s prices. 

So that’s my run down of the show. I came away less worried about MOs future and a lot more informed about what is out there to help us either by support or equipment. The 4 hours flew by and now I am going to spend the next few nights reading through all the magazines and information booklets I received. 

 

Gosh….our GOSH appointment

Today was rather busy. I was very nervous as we had a GOSH appointment and I am always nervous for the whole week before a hospital visit. Yesterday BBG went into the paddling pool and didn’t move, in fact she has only splashed once in her life. SB came to the rescue and showed her how to splash. It was rather cute and reminded me yet again, not to be sad about what she can’t do but be happy about what she can do. Also, she can have a ‘normal’ life just with adaptations and help and this was a perfect example, she can’t splash in the pool but she can still use the pool.

 ​


This then spurred me on this morning and I went to my local baby sensory class. See I had been forgetting that BBG needed the lessons and that actually, yes the babies are all sitting independently, yes some are trying to stand but actually they are all developing differently and since going last time BBG has come on leaps and bounds. So I dusted myself off and went to the class and BBG surprised me. I was filming her during a song and she shook her musical instrument! She is 10 months old and has finally held an instrument and shook them, whether she did it on purpose or not I am not sure and I don’t care! she shook that instrument and I am one proud mummy for her doing that. Click here to see the video.

I then rushed home and sorted out the hospital bag. See usually I just take a muslin, a couple of nappies and some wet wipes when going out. I always panic when I know we are going to somewhere like the hospital where we get there on public transport. I also hate this time of year where it can be 30degrees in the morning and 12degrees in the afternoon so I never know what to pack, a coat, a jumper or a blanket?!?! I decided to just take our BundleBean it fits into its own bag and is quick to put on and off the pushchair so no need to worry plus her favourite toys.

 

Just slightly excited to be on a train

Thankfully the weather held out and we got off the train, after checking the time we realised we had 25 minutes to do a 43 minute walk to the hospital! We decided to try and power walk the whole way hopefully meaning we got there on our appointment time… Well with 10 minutes to go and only half way to the hospital we decided we should probably bite the bullet and get a taxi. Can I just say London Taxis are so much easier to get then our local ones we had about 5 to choose from.

By now I was extremely worried, my nerves had sky rocketed. I was on the phone desperately trying to get through to the ward to say we were on our way! Thankfully we got there and we were only 5 minutes late (I detest being late for appointments, it physically makes me feel sick).

We had just sat down, checked our phones and we were called into a little room, this was just where the nurses weigh and measure the children but still we went in extremely fast. We then boycotted the waiting room and went straight into to the consultants room. Our consultant is so lovely!

Today we were there mainly for BBGs breathing and eating. We weren’t really sure what today entailed, whether it would be tests or just talking and a general review.

Our consultant listened to what we were saying and it sounds like BBGs throat closes up when she is laughing or talking, that her nerves do not quite tally up and when she is concentrating hard on something her body forgets to work some of the muscles. The consultant then quickly got on the phone to see if a member of the Speech and Language Therapy team (SALT) could come down and see BBG today, unfortunately they couldn’t but we will see them in July when we go back up. Our consultant thinks this maybe the case when it comes to eating as well. That her throat muscles do not work. It was a relief to hear from a medical professional that we weren’t going crazy.

She then did a full body check and confirmed the shape of BBGs head was different, and that she wanted a MRI. However to get the MRI she needs the go ahead from the SALT team, to see if it safe to sedate BBG or whether it would be safer to do it under general… We aren’t sure which one we would prefer but we do know this is something extremely important.

All BBGs abnormalities were reconfirmed today and the new ones noted down. The consultant then advised us the words that we really didn’t want to hear. BBG could just be BBG and it is looking like we will never know what is wrong with her. My mind just whirled back to my emotions and then back to trying to keep strong about it all. The consultant obviously saw our faces and just added the words we needed to hear ‘we will do everything we can to help BBG’ my fears were gone for the rest of the afternoon. 

We will have to see what happens in the next couple of months but it does look like they are thinking of a feeding tube if she hasn’t improved her eating by July. We were also reminded that they really don’t know what is wrong as we were told next time she stops breathing don’t hesitate call 999 as her muscles may not start again for a long time. That hit home that they are worried about BBG and her chest. 

Who knows what’s going to happen tomorrow, next month or even in 10 years time but we know that the best drs are looking out for BBG and we are there fighting her corner as she can’t.