My Sunday Photo ~ Sports Day Star

Although not the official school sports day, Little A was chosen to participate in the sports event called The Trevictus Games. This sports event held at our school is mainly for children with minor to severe learning disabilities not just in our school but also from other local Cornish schools. It shows how inclusive sports can be no matter your physical or mental health. Little A had a wonderful day and I feel that this shot of him jumping into the sand pit was my favourite.

All Signed off From The S.E.N. Department

Another milestone has come about for our Little A, not only has he started reception far better than we thought but he has been doing so well he no longer needs the input of the special educational needs department. This week he has most probably his last paediatric appointment and I'm waiting to hear about his most recent speech therapy results to see if he still needs that in school or not.

Getting the letter from the council made me smile. It's been quite a journey with Little A. We've gone from a very upset little boy who couldn't communicate and threw himself around, became completely hysterical with multiple sensory issues and would bang his head throughout the night causing us all much stress and many sleepless nights.

Now A has a pretty good vocabulary and will repeat most words put to him and only struggles with words that a lot of children his age often do. He can count over 10, is tackling phonics well at school and role plays amazingly well. It was said he probably has a sensory processing disorder, you can't get a diagnosis of this on its own so much, it's more common with other behavioural difficulties which A doesn't have. We used a lot of online tools, books and help from friends who have children who do have other diagnosis's which SPD is also a part of. Over time we have managed to figure out what really upsets A, that he's not just fussy, that we all have sensory preferences but when you lack the ability to communicate it looks nothing more than tantrums and stubbornness, how wrong we were!

We are very aware now that our boy is a sensory seeker, that he won't wear short sleeves, that he hates tooth brushing but now he's older knows it's essential. He has come through a phase where loud noises upset him greatly for a while, I think it's come with growing up and seeing fun in things like discos with friends and seeing fireworks. He hates his hair cut but now tolerates it being brushed and I still can't get him into jeans because they're too stiff.

When we were meeting nursery staff and signed on to the special needs list at school we went through speech therapy, paediatricians, occupational therapists, SPD groups, there's been a lot! At the start they felt he was at least nearly 2 years behind in his speech, emotional and social development. Well now he still forms close bonds to pupils who don't quite feel the same (cue heart break!) but we have conversations, he's learning at school, he's making friends, he's sharing, he's not so obsessed with one thing all the time. He's being imaginative, role playing, he's happier and even his sleep has improved which was sadly the only area we never got any help with.

I'm very proud of my little boy who has come so very far in just a year or so. He has been lucky (I shouldn't need that word but I've a friend going through a horrendous time trying to get help with her child so I do feel lucky) he has had wonderful support. Our bond is stronger than ever, I think I probably overindulge him a little now because we've shared the bulk of this hard time together, sometimes both tangled up as one crying together through sheer frustration and tiredness.

So yes, slowly but surly a space has become free for another child who needs the help and support more than my Little A. I hope they find their journey has a positive outcome too.

Cupcake Mumma

Little A an Update

Things have been up and down with Little A for a couple of years and it's been difficult. When I first realised I needed some help with A I phoned a health visitor in tears but now we are 2 years on things are getting easier. We had his transitional meeting at nursery recently and it was so good to know that my boy is going to be understood and not left behind during his first year of school. If all goes well he will be signed off the list for these school meetings we attend with a lovely special needs worker. Little A has some sensory issues but he doesn't have any other issues and as long as people who are close to him understand these he will be okay.

He will continue with speech therapy which has been such a gift. I cannot explain how much this has meant to us. With his speech sessions and with the nursery setting and teachers being so wonderful and his skills with socialising and interacting with other children constantly building he has come such a long way. I always said I was offended by the the line "once he starts talking you'll want him to shut up" and I stand firmly by that still. Until you are the parent of a child and you cannot understand a single word they say and they are angry, stressed and frustrated because of all the people in the world you should know what he is saying and you don't, you just don't know what a gift it is to hear words and sentences tumble from his lips after school, at bedtime, with his big sister, with me in the middle of the night, it goes on and I love it. He is still very repetitive which of course is something that wears thin but overall I couldn't be a happier Mum if I tried!

We've had an occupational therapy consultation which was a success. I think it went very well. The therapist did agree with sensory issues, once written down we could see his main issues revolved around touch and he also has trouble self regulating. He is sensitive to noise but a lot of what I described made her feel that it was best to see our doctor (we think he could be experiencing tinnitus which is just horrible because I have it) and to get him a hearing test just to be sure. She also felt the head rocking and banging and the sleep disturbances and night terrors were not sensory so we have been referred to Sleep Solutions. I'm not sure what they can advise, I think we have a mixture of waiting it out to do and habits to break which is all very difficult when we all just want sleep but I'm willing to hear suggestions and honest views on our situation. Obviously I'm prepared for the inevitable hard work and screaming in future too...

We have a paediatric appointment next month which I think may be our last one but I'm not sure. We have a specialist dental appointment coming up because for the first few years we really struggled to brush Little A's teeth and I'm hoping that although now he copes better with the feel of tooth brushing he still finds it distressing, so I'm meeting the dental team to see if they'll coat his teeth to help protect the enamel. His doctors appointment is this week and I'm sure his hearing test won't be far behind! In the mean time, nursery is helping his transition to reception with visits and meeting the teacher (the whole class do this) A will have a personalised picture table of his new class and teachers that we can show him over the holidays. I think this will work with any child who is nervous about reception not just children who may struggle to understand their next step, so maybe if you're worried ask your nursery team or new teachers what they think.

So to sum it all up we are so pleased with A's speech and language, I'm happy with the outcome of the OT appointment because I think there are children who struggle with sensory issues much more than A who could benefit from their time. Since I took A to his first paediatric appointment last year I researched so much into sensory processing disorder and I changed the way I deal with him, our routines changed and when I started seeing what he struggled with I made allowances, or changed things or just understood him more, it's changed him so much I don't think OT could've provided much. I'm thinking of doing some posts about Little A's biggest sensory difficulties (tooth brushing, clothing etc) and how we deal with this. If it's any use to anyone let me know!

Cupcake Mumma

How Sensory Processing Disorder Affects my Son

Sensory Processing Disorder (also known as S.P.D, Sensory Integration Disorder) is most simply described as a traffic jam of the brain. When processing all our 7 (yes 7!) senses, the nervous system sends messages to the brain in order to process these senses and act accordingly. Sometimes we all experience a little overload or perhaps we can be fairly unresponsive but the child or adult with SPD will be affected by everyday tasks (teeth cleaning, hair brushing, socialising, play; both at home and school, eating, clothing and so much more) without help and a sensory diet, children and adults can be left with constant battles with daily activities that should not cause distress. After our first paediatric appointment we walked away feeling lighter, now I had a name I could research. The wait between now and an occupational therapy appointment is unknown but this is the best step to take when dealing with sensory processing problems.

SPD does not get cured. But by working through it in the early years he could learn to live with many sensory issues and even grow out of some. Sadly though recognised, SPD is still not diagnosed as a stand alone disorder being commonly seen in children with autism, ADHD and many other learning and behavioural problems. Most health professionals and occupational therapists treat SPD in its own right but it still needs more research and recognition (I'd never heard of it until researching for my son) With a Sensory Diet, my son will learn to manage his difficulties, at least we most certainly hope so.

So how does S.P.D affect Little A? 

Mostly he is hypersensitive and a sensory seeker. He is the child that head rocks, runs into walls and drawers, enjoys running around and being free to make lots of his own noise and play rough regardless of someone else maybe not wanting to. This is more common with his sister rather than another child, say from school.

Having his hair cut causes A much distress. Lots of children hate having their hair done, it can be a long and horrible process for loads of parents. For a child with SPD the noise, vibrations of clippers, snips of scissors, your touch upon their person can cause them pain. It is like every hair on Little A's head is attached to a nerve and by snipping away we are causing the most pain. It's been suggested we let his hair grow but every day brushing and eventually getting out any knots would be like a daily hair cut for him. That's no fun for anyone.

Teeth brushing is another one which many children protest and fight the parent on. There's again a lot of sensory input to deal with. We are currently unsure if he could be experiencing sensory distress or be like many other pre-school children who need pinning down!

The cold bothers A a lot. He will only wear long sleeves, hates shorts and trousers that don't cover his legs and always leaves the house in gloves and a hat even when not too chilly.

He becomes distressed when he cannot pinpoint exactly where a noise is coming from. He hates sudden loud noises and banging. At the other end though he is a seeker and therefore does not mind creating as much noise for himself as possible! Loud phones when watching movies, loud games and lots of shouting and screaming are A!

Difficulty with speech and language. He always needs something to do with his mouth. He chews his jumper, coats and sleeves even his gloves become soaked! He still has a dummy and over fills his mouth when eating.

He will only eat foods that require his jaw to work hard. He loves crunchy foods and avoids wet, lumpy, hot food and has a preference for cold food.

He loves squeezes and bear hugs from people he is familiar with. He's a pretty friendly boy but he isn't always keen on others touching him or pulling him in directions.

He's a fidget!

Poor sleep is a long term problem. Part sensory and part difficulties with his transition from deep to light sleep. Currently no nearer to solving our difficulties.

If A has a preference or his mind up there is no reasoning, no distracting and no negotiating. He has to wear his wellies most days, he may not want to wear a certain piece of clothing but you won't have a clue why! He may eat food one day and not the next, it's never predictable!

He's incredibly distracted when out and about making school runs, nursery runs and anything that should be quick doubly long and doubly frustrating!

Showers terrify him but baths are fine. Just stay away from his head! He also loves water play but you must not splash him or cover him with water; especially if it's cold!

There is so much more to A and more to sensory processing disorder. Do check out the link at the start of this post to read more because it's a lot more complex and I'm having a hard time explaining! I hope this gives people a little insight into our special little man. People that see us need to take this on board so we have a happy melt down free little boy!

Cupcake Mumma

Our Paediatric Appointment and the Start of Our Journey

The day before our appointment to see a paediatrician I wrote this post about hoping to be taken seriously and in general just hoping to get some answers.

I wasn't nervous at all about this appointment which was a good sign. I really didn't know what to expect and ever since I knew we were going to visit our paediatrician I tried to research what may happen. Everyone visits these professionals for different reasons but just to find a personal account  of what a parent could expect as a rough guide would've been really comforting to me. As an anxious person, I really like to know what I'm facing so I can feel more in control! I'm writing this partly as a memory for my blog, partly as an insight into what may happen when other parents are meeting their paediatrician for the first time and it will also become part of a page that I'm setting up now we know that Little A most likely has Sensory Processing Disorder.

The Meeting:

I received my letter for appointment 3 months after my meeting at nursery with a member of staff from the Special Educational Needs (S.E.N) department. I phoned to confirm Little A's appointment at my local outpatient health clinic and waited for Thursday morning to roll around. If your child is old enough to understand i'd recommend talking to them about this appointment before you go (if you think this would be helpful) Little A didn't really understand but I told him we were seeing a special doctor.

When we entered the room, which was a basic GP surgery room with the usual equipment, bed and what not, Little A sat nearest the desk where he would soon be able to do some puzzles and drawing for the paediatrician. I was asked to clarify how old A was (very nearly 4) we spoke about a few points that were in the report from the nursery and the S.E.N department, just confirming the points and discussing how he has been getting on. At this point I mentioned the list I had brought with me (please do this parents and carers!) after a few more minutes of talking she suggested she look over this list I had put together (2 sides of A4 detailing any behaviours I could think of) immediately she asked if I heard of sensory processing. I said that I had recently come across it on line and found a processing disorder which I felt was so like my son and wanted to mention in the session today. I was given very little detail and was told they wouldn't diagnose it per-say because of his age (lots of children dislike their hair being brushed and teeth cleaned etc so it's difficult but based on other details I had written it was a case of 'this is what is most likely going on with your son.')

Little A was quite keen to interact with his doctor and after a short while his height and weight were taken (all normal) and we spoke about his eating which she confirmed was common behaviour in S.P.D, only liking very certain foods, not having a very broad range of likable foods or disliking the foods touching for example) she got A to jump and hop and balance which was all normal for his age and development. Then she spoke to Little A about the pictures he had drawn ( a spider and Olaf) with some input from myself. She spoke about his speech and I said that I'm happy to continue with speech therapy because he has come such a long way. She agreed and felt developmentally wise physically he is doing great, it is just his speech and communication that is behind.

Then Little A did some colour matching. He performed this very well, only getting 3 colours mixed up. He couldn't tell her the names of any colours but that was expected. He then did 2 simple puzzles perfectly. Seems he's achieved the goals that were set after our first meeting at nursery now I re read it! Excellent! Anyway, these were the only activities A had to participate in. We spoke about his sleep as this is a big problem for us. The only thing we can really conclude is that he has trouble when transitioning from periods of light and deep sleep. There isn't a cure, just some things we can try. I'll have to accept this as a long term problem with A and hope that one day soon he can grow out of it, could be a while!

To conclude the meeting, the paediatrician felt there were no other behavioural problems to deal with and I admitted that I felt the same but felt sure there was 'something' and Sensory Processing Disorder fits very well and means I can work with A better. We are getting A referred to an Occupational Therapist which is a common process as I understand with S.P.D in both children and adults. Hopefully we can learn what A can stand and what he really dislikes, although we are already discovering some main causes of distress.

The whole appointment for us lasted 45 minutes and was a friendly and relaxed appointment. I left feeling helped and hopeful. A was very restless by the end of it and very bored so it ended at the right time! I'm going to be doing more writing about S.P.D. I've found some blogs I want to share and to write about our own journey with A as it's all so very different; one thing I have learnt already!

Helpful Pointers For Your First Paediatric Appointment

* If you feel it's helpful, talk to your child about the upcoming appointment and what may happen if they're old enough to understand.

* If it helps your child, try to arrive a little earlier than needed (more to get used to the environment than anything else)

* Avoid anything stressful beforehand. I had to leave very early and do a nice activity with A before our appointment just so we could go slow. If A felt rushed he would've been in a foul mood and our meeting would've been very different!

* Do take a list with you. Try to be as specific as possible and don't worry about looking silly, you won't be the first nor the last person to take one of these lists with you!

* Re read any forms and reports you have prior to your meeting and even take them with you just in case. Your paediatrician will probably have the same reports as you so it's good to re read them, I tend to put them in my file and not re read for a while!

* Ask for notes. During our meeting several products and a website were mentioned which the paediatrician wrote down for me so I could look into them. I would've never remembered them as well as all the information!

* Sometimes if your child is under 5 your Red Book can be useful. It wasn't in our case but I know some clinics ask for them so it's worth checking.

* Your first appointment can vary from 30 minutes to an hour, it all depends on what you're being seen for. I'd make sure you prepare for that and also a small wait just in case. Taking some bits for your child if they're young or you know they are likely to get bored in this time (like some juice, a snack for before or after or something they find comforting) could help you.

Good luck with your appointments and if I've missed anything please let me know and I'll add them above!

Cupcake Mumma