Category Archives: Personal Posts

Sensory Seeker Progress Aged 6

Sensory Seeker Progress Aged 6

I thought I would give you a little update on The Sensory Seeker. He turned 6 at the end of April and is currently in year 1 of a Mainstream school. In previous years the topic has come up about him staying back a year and we had decided not to. Well I am (touch wood) pleased to say that this hasn’t come up this year. He is making remarkable progress in all areas and we are so proud of him.

Sensory Seeker Progress Aged 6

Speech and Language

He has met his target for Speech and Language of talking about what happens next (although the SALT did agree that this is with guidance from his TA). He still keeps calling girls he but now knows that he should be saying she and does correct himself. He needs to work on “why” questions but I am noticing even more that things are very black and white. For example he was asked why was the girl standing on the stool and he was unable to answer the why because he was too busy explaining that she was naughty and shouldn’t be! His reading and amount of words he knows by just looking at them is coming on in leaps and bounds.

Sensory Seeker Progress Aged 6I think the second pack of the Alphablocks Reading Programme has helped with this. This set introduces the “letter teams” and blending them in a fun way with activities and games – not forgetting those all-important gold stars to reward him when he gets it right. I feel that books each progress well from each other, and the second set from the first. They are interesting and colourful. I do like the flash cards and think that they are very beneficial for The Sensory Seeker as they are so visual.

Diet, Health & Hygiene

Sensory Seeker Progress Aged 6Obviously there was no miracle and he still eats nowhere near as good as his brothers but I can hand on heart say I think that the free school meals provided at school have really helped give him the push to try new things. It is all too easy to give in at home, worrying that your child may starve – but at school there is only the food provided and no other option. He asked for grapes in his cereal this morning and his dad accidentally put milk in the bowl too – BUT he still ate it all.

The Sensory Seeker is regularly using his brown inhaler morning and night, and even reminding me to give it him. We have had far less (toileting) accidents in the day and night – and now even sleeps in his normal pants.

I guess swimming also comes under this section and I am really pleased to say that he is coping well in group swimming lessons now. In fact I do not have to watch him all the time when he has a lesson now and so was really surprised at just how well his swimming ability has come along on our recent holiday.

Maths

Well he is super whizzy at maths and is not only counting but making number bonds up to twenty.

Gross & Fine Motor Development

The Sensory Seeker’s gross motor skills are also coming along well if watching him on his Microscooter is anything to go by! He still needs to develop more of a sense of other people’s space but physically he is able to use his body to move well.

He still isn’t holding a pencil properly but can write legibly with support. Given the option he preferred to use a pencil over the tablet which is great news. We keep on providing him with things to help develop his fine motor development. LEGO is a big favourite in our house and it is everywhere and played with every day at all times. It is the only toy I have all over my house!

Busy Busy Things That Go 2000 Stickers Big, Fast, loud and tough!

Sensory Seeker Progress Aged 6There is nothing better than a good sticker activity book to help develop those fine motor skills. This book is just perfect for my little boy with it being packed full of diggers, buses, planes, boats, demolition vehicles, tractors, ambulances, fire engines, trains, scooters and so on. There is a great mix of colouring in, stickers and activities such as mazes, follow the line, spot the difference and observation skills. I love how all the stickers give a lot of free expression and creativity without making any mess.

It was also very beneficial for helping him develop more of a relationship with his older brother (aged 7) as they were both able to share the book, as well as work on it together.

ISBN 978-1-4723-6699-3 £8.00 Parragon Books Ltd

Friendships

The Sensory Seeker seems to get on well with others and has certain people he asks to play with. I am sad to hear him talk about how other children get invited to each other’s houses and he doesn’t but that could have absolutely no relation to his special needs. He is being invited to parties and no-one is nasty to him. The Sensory Seeker does still need help in maintain play going as he can join in but then doesn’t understand properly how to play by other’s rules.

We were sent Busy Busy Things That Go 2000 Stickers Big, Fast, loud and tough! and  the Alphablocks Reading Programme free of charge for purposes of review. All words and opinions are my own.

The Sensory Seeker Progress

The Sensory Seeker Progress 5 years 10 Months

I thought I would do a progress post of how The Sensory Seeker is doing. He is currently 5 years and almost 10 months old.

The Sensory Seeker and Mornings

As long as the routine is there mornings seem to be going pretty well. Yes The Sensory Seeker  may need encouraging to eat his breakfast but generally this is happening (whether that be dry cereal, scrambled egg or he loves bacon). I even have managed to get him to have a drink of milk each day. There have been times when this has been more difficult, and at one point he just screamed and screamed. Looking back I am not sure if I was not fulfilling The Sensory Seeker’s Auditory sense.

The Sensory Seeker ProgressAlthough it was really difficult at the time I just tried to focus on the fact that it was The Sensory Seeker that wasn’t coping. That it would pass. I knew it was to do with lots of changes and possibly tiredness. Instead of punishing him for his behaviour we tried to make things easier for him (without spoiling). We relaxed our boundaries (such as a complete ban on computer games in the week) in return for behaviours we desired (such as eating all of his breakfast before school). Teeth brushing is going really well, which is a lot to do with our fairy and the fact that he has “big” teeth coming through.  He is also really enjoying playing with LEGO before school – which is great for his fine motor development, imaginative play, sharing and attention. I know at the end of the term he is getting more tired and less co-operative and so I do tend to just save the argument by getting him dressed myself. The Sensory Seeker loves scooting to school – which not only gets us there faster but is good for his gross motor, his proprioception and vestibular senses. I also have my own Microscooter* now to help me keep up with him and ensure that he is safe. Thank you to Microscooters for this kind donation.

The Sensory Seeker At School

The Sensory Seeker ProgressSchool seems to be going really well for The Sensory Seeker. I haven’t heard any concerns and he seems to be progressing at a good rate. He has got really independent at going into school and doing the things he needs to do (hanging up his coat, ticking what he wants for dinner) before slotting into playing alongside his peers. He has had a few toileting accidents (more so when there was a lot of change) but other than that I am really happy with how things are. The Sensory Seeker even seems to be trying now foods as he now has cooked dinners at school. It is good to hear him counting and reading particularly, as when he was hardly talking it was hard to imagine him ever doing these things. He doesn’t like his shirt tucked in or his buttons done up – so we are currently not forcing him to.

The Sensory Seeker After School

The Sensory Seeker ProgressThe Sensory Seeker now goes to Boys Brigade, Football club and ICT club (all with his older brother who is 7 years and 4 months): He seems to be coping well (again just toileting issues). He is able to play (mainly with LEGO) without supervision or needing things structured for him. At home The Sensory Seeker can be easily wound up – but think that’s more of a brothers thing. He is occasionally eating with his fork/spoon but mainly with his hands still. Currently we are still concentrating on the fact that he is eating, trying new foods and textures. The amount is small and we do have to barter with him a lot. Bedtimes he goes down pretty much without fuss in routine. Sometimes we relent and let him go to sleep in our bed. He is more and more ending up coming into our bed in the night and the one time he didn’t he had an awful nightmare that I had died. Other than that he’s got much better at not touching people after I have told him and even was easier to have his hair cut this time. The Sensory Seeker seems to have a much larger attention span that he used to and has developed his own interests. We recently took our Microscooters to the Forest of Dean to do the Gruffalo’s Child Trail again and he did really well with reading the words (as well as the scooting).

* I received a free Microscooter to promote the benefits of having an adult scooter on the school run. I was not specifically asked for this post but wanted to share how useful it is in this situation.

Our Little Angel

Our Little Angel – The Christmas Production

Our Little AngelOur Sensory Seeker had his school Christmas production today. I guess you could say like a lot of other 5 year old boys. And that is exactly why I am writing this. Because today our Sensory Seeker wasn’t a boy with difficulties – he was a little Angel. He was no more supported than any other child in his year group and he was just fine!

Okay he may have poked the Star (character) when he was meant to be pointing at her. But her remember to point, no-one had to tell him to. No-one helped him on or off the stage. He just did it all by himself. And when he repeated the performance for the second time in the evening he kept his attention and another parent told me how well he had done.

I am so proud of how far our little Sensory Seeker has come and I am so excited about how far he has yet to travel.

Ethans Escapades
Christmas Tree Hand Made Biscuits Gifts

Christmas Tree Hand Made Biscuits Gifts

Christmas Tree Hand Made Biscuits GiftsWhen you have a child with special needs I think that a Hand Made Christmas gift for their teachers is a really special touch. The teachers know that The Sensory Seeker does not cope with the change of routine that Christmas brings, and how hard he has worked at making their gift. Not only does it help show the progress he’s made but it also helps him cope with his Sensory imbalance. This year he made Christmas Tree biscuits – which I then simply packed into cellophane, tidied some ribbon round and added a bow.

Hand Made Christmas Tree Biscuits Gifts

The recipe to make the biscuits is slightly more complicated but The Sensory Seeker used an all in one mix which seemed to work okay.

Christmas Tree Biscuits Ingredients

250g Softenend butter, 140g castor sugar, 1 egg yolk, 300g plain flour (plus extra if it is to sticky and for the surface/rolling pin), orange flavouring

For Decoration: Ice sugar, colouring, sweets.

Christmas Tree Biscuits Method

Christmas Tree Hand Made Biscuits GiftsMeasure all the ingredients. The benefits for The Sensory Seeker were that he had to listen, follow instructions and his attention/patience were stretched. I often had to change my use of language to be simpler for him, or less abstract to him. For example after weighing the sugar and flour they both needed tipping in together. But both items were white and some The Sensory Seeker did not understand the instruction tip the sugar in with the flour. But when I told him to put the contents of the white little bowl into the green big bowl he was able to understand.

Mix together all the ingredients. The Sensory Seeker started by stirring with a spoon, this was beneficially for him learning to try and stop himself from just touching things. I did then let him mix it in with his hands – which is good for his hand development as well as getting the desired tactile sensory input that he requires.

Next the mixture was rolled out and Christmas Trees cut out using cutters. If you have no cutters I am sure a Christmas Tree shape would be easy enough to make with a knife. They were then baked in our fan oven at 180 degrees for around 20 minutes (watch the biscuits and smell them until they are ready). Let cool before decorating.

Decorating the Christmas Tree Biscuits

Christmas Tree Hand Made Biscuits GiftsSimply colour some icing green and pour over the Christmas Trees. Whilst this is still wet decorate with stars and circle sweets (to represent baubles). When this has dried squeeze on more coloured icing to represent tinsel.

Turning Christmas Tree Biscuits into Hand Made Gifts

To turn the Christmas Tree Biscuits into beautiful Hand Made Gifts then simply shape some cellophane around them (we got ones with Christmas Trees on from Ebay), and secure it in place with sticky tape. Make it more of a gift by added some ribbon in festive colours and a bow.

Christmas Tree Biscuit Gifts Benefits and Problems for The Sensory Seeker

Christmas Tree Hand Made Biscuits GiftsMaking the Christmas Tree Biscuits provided a lot of benefits to The Sensory Seeker, but there were also a few problems to overcome. Whilst making the mixture up I also talked to The Sensory Seeker a lot: This was good for his auditory sense, following instructions, and his understanding – as we discussed concepts such as number, texture, etc. He has made great relationships with the staff at school and it was great to see him taking such pride in the activity. This is great for his sense of self and of his World (thinking about others). I was actually really impressed with him asking if it was time to start the next section again when he was allowed to play on computer games. The activity was great for his hand development with mixing, rolling, cutting, transferring (the biscuits onto the tray), and fine motor for adding the sweets. Most of these also helped his hand-eye co-ordination and his sense of place. He was able to meet many aspects of his Sensory Diet such as adding in some orange flavouring, which is good for the sense of smell, whilst giving the biscuits a Christmas feel. The Sensory Seeker DID need to wash his hands A LOT as inevitably he ended up touching. The surfaces also needed a lot of cleaning. The Sensory Seeker was particularly unable to resist the butter and had to be stopped from giving the (cooked) biscuits a little kiss (to give his teachers his love). It was a great way to let him become more aware about hygiene. Sitting still is quite difficult for The Sensory Seeker so the biscuits were made in stages. He also sat on a stool that allowed him to spin around and around in circles getting his vestibular input.

Note for parents: This activity may require a lot of patience and result in a lot of mess. We did it in the kitchen (with easy wipe surfaces and floors) and not far from the sink.

Christmas-countdown

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Zing Zing Tree, Bluebearwood, Rainy Day Mum, The Boy and Me, The Sensory Seeker, Adventures Of Adam, Thinly Spread, Best Toys For Toddlers, The Gingerbread House, My Little 3 And Me, The Mad House,



sensory seeker in the tactile sense

School holidays and The Sensory Seeker

Work destroyed – torn to pieces and coloured over, head butting, saying inappropriate things, playing with food, not eating favourite foods on an already limited diet, not sleeping, standing on his hand, spinning, attacking his brothers and smearing ice-cream all over his face. Yes this is the first three weeks of the school holidays. But you know what – it is going well!

School holidays and The Sensory Seeker

Ways to cope with The School Holidays and The Sensory Seeker

The fact that I can even list what my 5 year old has done that is a tad bit stressful so far these holidays is real progress. In fact a lot of them were one off incidents instead of daily occurrences. In fact the reason I am even able to write this is that the school holidays are going so well that he has gone off to a summer day football session. It is at his school with a familiar adult but still a massive step forwards. I think that the two key ingredients for me are that I am not letting myself get wound up about them (he can’t help it and it must be worse for him) and trying to ensure he has a sensory diet to lower the risk of him not being able to cope.

Listening to The Sensory Seeker

I have stopped trying to force him to do things because I fear he will become an adult that can never do them. For example we missed seeing The Lost Dinosaur when we went to The Eden Project because he really could not cope with the sensory input anymore. The barefoot trail really helped him but he was really struggling. We have learnt to watch and listen for his cues and act on them. In this case we removed him from the situation and went back to the holiday park.

Diet and The Sensory Seeker

The food thing is so frustrating but actually relaxing about it has been what has worked for me. So what if he has smeared food all over himself before eating it, yes not the most hygienic but it won’t kill him. Surely it is better than him not eating at all. I am careful as to how many foods I give him, make sure they are not touching, something I know he does like. I never expect him to eat anything – even things he does like. I am prepared to barter with him to get him to eat something healthy. He is learning to understand about when he is at school and when he is not. He has shown this by telling us that he can have pancakes on non-school days (they take time to make and wash up after). Just before the holidays ended he decided that he did not like chicken roll – which was the only sandwich filling he would eat before! Now he only wants to eat wraps. There’s no point in making a battle of it I just listen to what he wants.

School holidays and The Sensory Seeker

Things that have really helped with our Sensory Seeker and the School holidays

A paddling pool – we have a big pool outside and he can get in and out when he pleases.

Guns – water and the BOOMCo Madness Rapid Blaster – good for helping with his hand development.

The trampoline – this is an all year round thing that helps but our 14ft trampoline is great for him.

Ice – we made some frozen Lego shapes, great for his sensory needs.

School holidays and The Sensory Seeker

Cardboard boxes – squeezing into a tight cardboard box was good, and he loved that he was able to destroy it afterwards.

School holidays and The Sensory Seeker

Chocolate milkshake – this has been a big bartering tool this summer.

Picnics – I think he prefers cold food and he has loved the variety of a picnic. Plus with it not being hot food he can eat when he wants to. Particularly successful was when we made a last minute decision to take some jelly on a picnic.

School holidays and The Sensory Seeker

Luckily we have a chill factor jelly maker that makes jelly in minutes and not hours. Following on from the success of Character’s Chill Factor Slushy and Ice Cream Makers they have now bought out a Jelly one! Simply leave in the freezer (minimum of 6 hours) and then when you want to make Jelly add your mixture and it is set in minutes! You need to use half the amount of water than normal, and you squeeze, squeeze, and squeeze some more. Then after a few minutes flip it over and leave for another minute to set. The jelly maker is suitable from 5 years (although they will need someone to make the jelly mixture). We found that it was really good for our five year old Sensory Seeker’s hand development. I am always forgetting to make the jelly so this is just perfect for me. Or for my impromptu visits to the park with a jazzed up picnic.

Not worrying about bedtimes – we will suffer later no doubt but whilst the sun is shining late at night and there is no school we have been much more relaxed about what time he (and all the boys) go to bed.

Keeping him active and entertained – using visuals such as alphabet bingo or working through his Gold Stars Starting Maths for the summer gold stars challenge. Children need to keep their education going through the school holidays so they do not forget things. As he is behind his peers I feel that this is particularly important.I picked the lower age book (3-5 years) and think it has been beneficial to both of us to see how easy he seems to be finding it. I feel it has really helped illustrate just how far he has developed in his reception year too (as he is still working towards all but one National curriculum levels and may be moved to P-levels). Each page has a simple activity and it is very visual. It was good for communication as we both discussed things in the book and what was expected of him. He is loving the stickers that he gets as a reward for completing each of the pages too. If he does all 30 then he will receive a certificate too. It has helped me identify that he needs more help/practice with colouring in.

School holidays and The Sensory Seeker

We have also had lots of play, meeting up with others, days out, etc. with much more planned for the rest of the school holidays.

I would love to hear how other people are coping with the school holidays with their child with Sensory Processing disorder. Or any tips/strategies that they use.

We received a free Chill Factor Jelly Maker and Summer Gold Stars Maths book for purposes of review. No other compensation has been given. Words and opinions are my own.

he is disabled

He is Disabled

Being reminded that he is disabled

I think the main problem I am having with deciding whether to hold our son back at school a year or not is that it means accepting there’s something wrong not quite right with him. Funny as we all know he is disabled, he gets disability money and has full-time one-to-one support at school. It is easy to compare him to others with disabilities and think that the term really does not apply to him. He is so behind his peers in so many areas, but yet he’s just our son. Sometimes it’s easy to think that it is me with the “problem” – not giving him enough attention, bad parenting, I do not have the patience. I would rather those things be true and strive to help him as much as I can. But the reality of it is it is him and the fear that he may never develop further is frightening.

he is disabled

Pushing all these fears away and just being positive not thinking that he is disabled really helps with day to day life. So he wets himself and doesn’t sleep at night – lots of children do that at aged 5, he is still young. If he moves up then I could see that as a problem as he may be the only child to do those things. If he stays down then those younger than him may overtake him.

The Fears

I know this is covering old ground but the decision day is getting closer. I had a chat with him and he really wants to move up. On days when I forget that he is disabled he seems so level headed, and that it would just be stupid not to let him move up. Suggesting that he will fail before we even let him try. But should we not upset him and just wait for him to fail, or should we nurture him and prevent him from failing. I know that the education system is more likely to help the school financially after he has failed – but we are lucky that he’s at a good school and they do not want that. He’s had a lot of changes lately and he’s not been himself. I had the back door open earlier and I told him not to go outside. I said that it was too wet. It was fresh air – I didn’t add that. I just said, “Kyle, don’t go outside. It is wet.” He is five years old. He said, “What did you say?” and I repeated it. Then he repeated, “What did you say?” and I repeated it again. This happened another few times before I just kissed and hugged him. Then I went upstairs and cried. He is disabled and just because it is invisible does not mean that he does not need the help. I have to stop thinking in terms of failing him and think in terms of what is best for him. I wish I had the answers.

he is disabled

But after the decision is made I shall continue being positive for him. He has come such a long way. If he stays behind he will be ahead of his peers. Then that will be good for his confidence. If he moves up then it will be because it has been decided that it is best for him and he can cope. Either way I can forget that he is disabled then he can just be Kyle again.

batman mask

Batman Mask from a Cardboard Box

Being a mother is hard work, we all know that. So why do we continuously put too many expectations on ourselves? Well I’m learning to let go of them a bit and focus on what’s important. Now that will mean different things to different people. For me I decided that spending quality time with my children is far more important than an immaculate house (in fact even if I had no children I just don’t think it’s in my nature to spend my life keeping a sparkling pin home, as I say we are all different).  I know that right now the best thing I can do for my Sensory Seeker needs to help him develop is just play with him. On a Wednesday his brother goes to football club. In fact I think so do most of his friends. But I just don’t think it is fair on anyone that he goes because of his needs. To make up for him missing out on this I make sure we do something together.

 batman mask

The Batman Mask

This week I had a nice sensory activity of salt dough lined up. This is something I have never done before and thought he’d appreciate it (I’d just need to watch that he did not put it in his mouth). But then I saw it THE CARDBOARD BOX. It just kind of screamed at me that it would make an AMAZING Batman mask! He is loving everything related to Superheroes and Villains. I popped it on my head and it was the perfect size. I simply cut out some cereal boxes for ears and stuck them on. Cut out holes for the eyes and mouth – and viola – it was ready for him to paint.

batman mask

One of his problems has been to develop his attention – how long he can sit at a task. Using something he is interested in has been a great way for helping with this. And he did, he sat and helped paint it all black (we were going for the Lego Batman look).

batman mask

Also painting Batman was good for helping with his fine motor skills, his hyper-mobility in his hands, turn taking (with the brushes), his self-confidence, he knew to paint around the holes so developed his control, as well as learning that the bigger brush covered more of the box quicker. I learnt that if you add glue to the paint it will cover the tape!

batman mask

And you know it didn’t really look that good. But he was so pleased. And most importantly we had spent that time together. Oh and he argued it was his Batman mask when I put it on – so he must have liked it.

batman mask



”Sunday

writing name

Name Recognition

Name Recognition – A Proud Achievement

Recently I mentioned how proud we are that our son was writing his own name. To do this he first had to recognise the letters, then copy them, and then remember them to write them without looking. Being such a visual learner we like to ensure there are plenty of words visually around in his environment. Research shows that most learning is done without even trying to remember things. This is why learning through play is so important.

Writing his Name

I am really proud to say that today my son managed (with help) to write his name with all the letters the right way round! (Without looking at a visual reminder).

writing name

Not only that his one-to-one support worker looked like she wanted to cry with happy tears yesterday, as she told me how he had written (copied what she wrote) two whole sentences!!!!

We have been playing with things such as letter stickers and shaving foam to help with his letter recognition at home. What letter activities do you do to help your child?

What things have your children achieved – no matter how big or small?

blood tests special needs

Blood Tests – Is this the end of the road to Diagnosis

Blood Tests – The Next Stage

Now they have ruled out our son meeting the Diagnostic criteria for Autism they want to determine if he has something else: Something that can be determined by simply doing a blood test. I say that like it is the easiest thing in the World. I feel so selfish for wanting it to come back negative, but before you defend me it is not for the right reasons. You see it is apparent that our son does have additional needs, it’s the determining what. So a test coming back negative is just another barrier to helping find out what it is, so that the best course of action is taken for him. No the problem with the test coming back positive is that then they will want me to give blood too.

blood tests special needs

Giving Blood facing my Phobia

I could have refused, but I am not going to be the one to stand in the way of my son getting every bit of help and support he can. However, I did nearly collapse in the hospital when it was suggested (they kindly went and got me water). In fact even writing this is making my arms itch and my body feel faint – like I shall collapse. If you have not gathered I have a needle phobia. This is how our son started life. I was meant to have bloods taken at 34 weeks – but the midwife wasn’t available. I ended up having them when I labour (at 35 weeks). Magic cream, gas and air, very loud iPod, and my husband stroking my head, I SCREAMED the whole time. Lying down at least meant I couldn’t faint. See I can do it, when I have to, if I have to.  And I do, have to.

Blood Tests what they mean for my little boy

CGH Array Analysis and Fragile X Testing the letter says. New terms, not both unfamiliar, I vaguely remember someone telling me he sounded like he could have Fragile X before. Do I dare look, search out the answers, or do I just wait?

His test is Thursday. Luckily my husband’s work have been amazing. And so has he. He has the day off to take him. My son, I’m sure, will be fine. Poor thing has had so many (not as many as a lot of children I am sure) blood tests and things. He is such a good boy. And then more waiting. Will I look in that time? And what if he is positive? What if I’m positive? What then?

No we shall wait, and just be positive, and not think about the blood tests, or the needles, and just stay focused on the happy little boy who is coming along so well.

official diagnosis

Official Diagnosis – Accepting it is not Autism

The Official Diagnosis of our son not having Autism

It was always going to be hard to accept whatever the Paediatrician said to us, the road to an official diagnosis was always going to be rocky.  I had prepared to be upset when it would be announced that my child has Autism (even though I have been having to stop and correct people for saying it). Autism it is what people have heard of, isn’t it. It’s what people know and it feels kind of safe inside that label. When the official diagnosis came back as our son not having Autism it was initially hard to accept. This was despite the fact that I had been prepared that this maybe the case (see my post on Sensory Processing Disorder).

official diagnosis

Why an Official Diagnosis of Autism is what I thought that I wanted to hear

Most people’s reactions were that it was good news – after all Autism is a lifelong condition that no-one particularly wants for their child (see my post on differences of opinion about whether people would want to take it away if they could). But the fear and uncertainty that an alternative diagnosis brought really made me want to fight against the outcome. Our oldest has Asperger’s Syndrome so we have an idea of how to deal with things, what we can do to help, where to go for support.  Plus a diagnosis of Autism would have made it easier to remember what the official diagnosis is (but that is NO reason to want it to be Autism). I guess that, for me, it feels so much ‘like’ Autism that it just feels like he will not get the associated help but still have problems associated with his disability.

official diagnosis

The Official Diagnosis

The official diagnosis was that his behaviour could not be explained by autistic spectrum disorder that a diagnostic formulation at the present time is one of language delay/disorder, developmental delay, immaturity of attention, play and social/emotional development.

What the Official Diagnosis may mean to his future

This may now affect so much including his statementing, his financial help, the way he is treated, his support in school, how people react to his behaviour, and so on. But for me the difference is one of knowing where to look for the support, . It is so much easier to find support groups and courses for children on the autistic spectrum, and now he isn’t in that category I am not sure if I can, or should access them. The situation is still the same, the same advice still works, but somehow everything seems different now. I am grateful that the school are doing all they can, he is coming on leaps and bounds. So far the official diagnosis has not changed that. But they are funding him the extra hours, expecting a diagnosis of Autism I presume. I’m not sure if at his Statement review he is still not awarded full time support whether they will be financially able to keep that up. I’m also concerned that he has a statement categorised as cognitive and hope that this official diagnosis will be able to change that to communication and interaction.

Staying positive after the Official Diagnosis

Whatever happens the official diagnosis has been made and there’s just no point getting upset about it. He doesn’t fit the Autism umbrella but they have been clear that is not down to parenting or behaviour problems. They have identified what areas he needs help with and there is support in place. This Christmas he has been amazing. He has developed so much and coped so well. It hasn’t gone without problems (his official diagnosis did not say there would be no issues) but watching how far he has come is just amazing. He is such a happy boy and really made this festive period special. We have so much hope for his future, even though the official diagnosis was not what we expected to be, and we do not fully understand what we are now dealing with.

official diagnosis

What happens after the Official Diagnosis

I do not know whether he will later have another diagnosis, as feels is the case in how we were spoke to and the fact that the diagnosis says “at the present time.” This decision was made by a second paediatrician through a D.I.S.C.O. and we have to go back next month and see the original lady we have been speaking to for over a year. I’m not sure what will happen then, and whether she will add on any sort of Sensory Processing Diagnosis. What I do know is that there are suggestions for help, and that the best way to help is to play with him with something that he is interested in. This is important to me, because it doesn’t really matter what the label is, as long as we know how to keep moving him forward. We have a new speech and language therapist coming out to see him (and she also works at the communication and interaction to centre we wanted him to attend) and am sure the school will continue to support him and us.

If your child has been unable to get a diagnosis then you may be interested in SWAN UK , which is a project run by Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions.

This is NOT a sponsored post.