Category Archives: Personal Posts

Name Recognition

March 26, 2014Personal Postsname recognition, ProudSensory Seeker

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).

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 – Is this the end of the road to Diagnosis

February 25, 2014Personal Postsblood, Fragile X, needle, phobiaSensory Seeker

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.

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 – Accepting it is not Autism

December 27, 2013Personal PostsNot autism, Official diagnosisSensory Seeker

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).

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.

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.

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.

Resistant to Change

October 24, 2013Asperger's Syndrome, Personal Postsresistant to changeSensory Seeker

Resistant to Change – Meltdown or Avoid

One of the things we were asked during the assessment to determine whether our son had Autism was just how rigid our routines have to be – is our son resistant to change? No he doesn’t like his routine changed and, especially at Christmas, this can be a big thing. However, we do not have to have a really strict routine, with many rituals. Personally we feel that this is because we couldn’t do it, so don’t. My brother (who has Aspergers) was resistant to change – he is now approaching 30 years old and is most likely still playing with his wooden blocks with letters on that he had as a child. Growing up I remember that he had to make sure all his teddies were a certain way before he could even leave the room. Possibly we are ‘lucky’ that our son’s needs are not like that. We do feel that a certain amount of forcing our children beyond their comfort zones, and handling meltdowns (as opposed to avoiding them) is beneficial for the long run.

Resistant to Change Experiences with our Oldest Son

Our oldest son, who has a diagnosis of Asperger’s syndrome, was resistant to change. We would tell him that we would be going to place X via place Y, and if something cropped up and you had to go to place B too he would have a meltdown. It went from changes and big disruptions, to him wanting to know every minute detail, and nothing could change. We were exhausted trying to even plan taking him anywhere, and wished we didn’t have to take him. Days out were so much less stressful without him – which made us feel awful as of course we felt he was a valued member of our family. Even now he is resistant to change, he does not understand why he should go anywhere, or do anything, that isn’t going to directly benefit himself. We are keen to work on this straight away with our little Sensory Seeker.

How does your child deal with changes? We find that even small changes at school can be really upsetting for The Sensory Seeker. Currently he has been wetting himself more often. Does anyone have any tips?

Autism Assessment: The Video Appointment

October 22, 2013Asperger's Syndrome, Personal PostsAutism Assessment, paediatrician, Video AppointmentSensory Seeker

Last week we had the big appointment, the next step in the Autism assessment. As you would expect we still do not really have any answers. The paediatrician took me and my husband into one room whilst two speech and language therapists went into another room to play with our little Sensory Seeker. It was checked several times that we were clear and okay with the fact that they would be video recording his behaviour.

At the beginning of the Autism assessment it was made clear what we and they hoped would come out of the appointment. I was clear in the fact that I believe him to have high functioning Autism and would like a diagnosis if that were the case; and if not to discover what it was.

Autism Assessment – Pregnancy, Birth and the First 2 years

During the Autism assessment the paediatrician asked a lot of questions about the pregnancy and first two years of his life. It makes me feel pretty bad because it is all a bit of a blur and to be honest he cried a lot, I found it hard to play with him (he still has limited attention span), and can’t really remember much mother-baby communication (apart from a smacking of his lips kind of clucking sound when he wanted feeding).

The paediatrician could not have been lovelier for the duration of the Autism assessment, asking how I’d coped with 4 boys (especially since I had been breastfeeding both of the youngest 2 at the same time). I did remember how empowered I had felt when our little Sensory Seeker was a baby, especially when I did not give up and let people tell me that my breastfeeding was the cause of his weight loss.

She reassured us me that his behaviour was not down to parenting, and nor did she believe that he was suffering from a developmental delay (although I’m sure I would prefer this to be the case so he could catch up I just know it not to be true). That they had enough experience to be unpick the complicated nature of his behaviour and see which boxes he ticks, and categories he falls into. That actually, mainly due to his language developmental delay, he may end up diagnosed as something now, and then a few more years down the line reassessed and re-diagnosed. That the important thing was to establish what help would suit him best right now. The thing is I know this Autism assessment will question his imaginative play and language delay coupled with just how bright he can be – which conflicts an Autism and Aspergers diagnosis. He may still remain undiagnosed.

Autism Assessment – Different view points

There’s always a worry that people do not see what we see – and I am sure I can say we here and it’s not just me. So it was reassuring that at the end she went and spoke to the language therapists, who took part in the Autism assessment, they described him (and the way he plays) exactly as we just had. What that all means I do not know.

I know the paediatrician has arranged a meeting with the school next month – so there will not be any answers until after then. But things are coming along well. His one to one support is looking after him well, and I can see he is popular among some of the children. I saw a couple of boys doing this special ‘tickle’ thing our boy does yesterday to him.

Every morning we go in and we look at his visual book together. His one to one shows him the picture of what he is going to do and then he finds it in his book and puts it on the next page, then the next picture, then the next – until he can see what he is doing for the whole day. His one to one has copies of the pictures and together they pin them to a wall in the book corner. As the day goes on, and the activities are done, she takes them away. This means he can see what is left to come, and sort of a judge of how much of the day is left. I take the book home and we can then ‘discuss’ what he has done at home. I’m finding he is getting more and more patient with it all, a clear sign his attention span is developing too.

Diagnosis Autism – What will tomorrow bring?

October 16, 2013Personal PostsSensory Seeker

Diagnosis Autism Final Assessment

So the time has come. The decision will be made. What will that decision be? Diagnosis Autism ? Will there be any going back? How much will it change things? Tomorrow we attend a social clinic. There they will film my son. And me. Playing. They want to analyse whether he has imaginative play and what his relationships are like. And well I don’t know what they are doing. Probably for the best. But from this they will finally decide whether my son will get the diagnosis Autism. Or not. See my previous post about This is My Child: Undiagnosed.

Diagnosis Autism The Emotional Rollercoaster

I am riding a massive emotional rollercoaster. I’m not good with emotions myself. Maybe that’s the problem. He does not need a diagnosis Autism. Maybe he just needs better support than I can give. But the more I wish this was the case I just can’t accept it this time. My son has special needs. I wish it were even less obvious. I mean it doesn’t even matter – he is happy! He is supported. He is loved. I do not even know what I’m scared of. He has made new friends at school and is settling well. The school are supportive and have put in place full time 1:1 support. They accept he has additional needs, whether or not he gets a diagnosis Autism. They do not think I am doing anything wrong.

Diagnosis Autism or Not and Impact on the Statement of Special Educational Needs

When a child receives a Statement they must have a Primary need in one of the 3 areas. Basically there’s behaviour, Cognition and Learning, and Communication and Interaction. To attend a Communication and Interaction Centre (as suggested was the most suitable place for our son) then the child MUST have Communication and Interaction as their PRIMARY NEED. The Communication and Interaction team usually see the child for a lot longer than they have seen my son so far (the delay is a whole other story) and because he doesn’t have, but is awaiting to see if he is going to get, a diagnosis Autism they felt it wasn’t worth arguing against the fact that his Statement has his primary need as identified as being Cognition and Learning. That the panel who decides if a child can go to their Communication and interaction centre would be most likely to turn him down too, as there’s not enough “evidence.” But the communication and interaction team stayed with him because I wanted him to go to this centre (where most of the children have Autism). But what if it is not diagnosis Autism? Then what? His statement will not be changed and he will not keep the team looking after him. The switch sounds like it will then be harder to get the hours on his statement.

Diagnosis Autism realising how lucky we are

Maybe I am just panicking. I keep being told how lucky I am. And I know there are children who need so much more care, I do. My son is lucky and I am lucky to have him, that I do not deny. And to have a Statement in place before he even started school too. But that doesn’t stop me worrying about my little boy and wanting to do the best by him.

So we shall wait for tomorrow and see what it brings.

Here is a help page by the NHS

This is not a sponsored post.

Tesco Toy Testing & A Trip to London for Our Sensory Seeker

October 15, 2013Personal Postsdays out, LondonSensory Seeker

We were delighted to be invited to London for their Tesco Toy Team Casting day in Central London. They wanted a mix of children aged between 3 to 12 years old; well I have a 4, 6 and 10 year old boy who fitted the bill. Tesco Toys include good quality games, dress-up costumes as well as traditional toys. Tesco Toy testers are required to share with the nation what Tesco have on offer. It is felt that children can be the toughest critics so Tesco Toy testers needed to be super-enthusiastic little boys and girls to be the ones responsible for putting them through their paces and being directly asked what they thought.

Tesco Toy Testing Trip to London

So off the five of us went for a long journey to London. We caught a train at just after 8am, armed with two 3Ds and a tablet, some spare clothes (in case the youngest had an accident) and some snacks.

We were a bit worried because last time we had taken the boys to London it had all been a bit much of a sensory overload for the youngest and he did not cope well. I’m not sure if he was more able to cope, as he’d been before, or if we were better prepared but I could not be more proud of him. We didn’t even need his spare clothes.

Tesco Toy Tester with Disability

In fact he was the star of our family as he got right in there with the toys – immediately spotting his favourite cowboy Woody’s hat and claiming it! He took it well when the Octonauts Octopod Playset (£31.99 from Tescos) was taken upstairs so another child could be filmed saying why they liked it, and just got on and played with something else. Note I have included a link here because I believe you need to check it out – this is going to be a firm favourite this Christmas.

He listened well to the instructions of what he was meant to do and co-operated when they took his photo. When the boys did go upstairs (I thought it best to send them up all together) we all thought he wouldn’t say anything. But then right on film my 6 year old said, “my brother can’t talk very much” and my little man piped up, “Yes, I can!” It was so funny. He didn’t say much and the guy did not really get him talking about the Octonauts Octopod Playset but he looked cute.

He really enjoyed the day and was asking over and over to go back again the very next day. Now we are waiting to see if the boys are called back to become an official Toy Tester. If nothing else he is really big on Batman lately and we discovered the Batman Imaginext Batcave.

Tesco Toy Testing over – Things to do in London

Whilst we were in London we also popped back over to the National History Museum, where little man had remembered that there were dinosaurs. He did not cope well with the crowded bridge over the dinosaurs again. We also got to go into the Princess Diana Memorial Park. This is a fantastic place and I recommend it to anyone. Not only is it a fab park but it gave us the opportunity to go to the toilet for free!!

This is not a sponsored post. My family’s transport to attend the event was covered, and the boys did receive a goody bag but writing a post was not a requirement.

Parental Request for Statement

September 19, 2013Education, Personal Postsparental request, Parental Request for a Statement, Parental Request for Formal Assessment, sen, StatementSensory Seeker

I was advised by my health visitor to make a Parental Request for Statement (see my post on Pinkoddy), that it would speed the process up. At this point my son had only had 1 maybe 2 Individual Education Plans (IEPs) and was showing a Global Developmental Delay (as backed up by the Health Visitor). There is normally a procedure of doing X amount of IEPs, moving onto School Action, and School Action Plus – before Ed Psychs etc come out before the child is suggested for a Statement. I think that if an educational setting suggest a Statement and at the first assessment it is decided that they do not need assessing, then 6 months have to pass before another request can be made, this is apparently also true with a Parental Request for Statement. Please anyone correct me if any of this is wrong I have never taken this route.

Edit: I have been told that if you request a Statement and are turned down then you still need to wait 6 months before another can be requested (but you can appeal immediately).

I was very lucky in that when I made my request for a Statement the Playgroup were very proactive in helping me, and they arranged for the Educational Psychologist to come out and see my son. However, he hadn’t seen the Communication and Interaction Team and I do feel that may be he ended up with the wrong Category of Statement due to this. As he was still at Playgroup he was awarded the full 15 hours to cover 1:1 support for the full time he was there. There was then another meeting to adjust the statement to fit in with moving up to school. He has 20 hours put in place to start school, covering lunch times, and an early review to be called in October, when the school have more of an idea of his needs (evidence of how it is a health and safety issues for himself and others, for him not to be left alone).

Please note that my son does not have any form of diagnosis at all, we are still waiting (only been going on for 2 1/2 years). You do not to have your child diagnosed before you can receive a Statement, and a child does not have to have a disability to receive a Statement of Special Educational Needs, there are lots of circumstances under which a child can receive one.

I found the address of my local Special Needs Department within my Local Education Authority. Below is a template of the letter I used to request a formal assessment for a Statement of Special Educational Needs.

“Dear Sir

Request for formal assessment

I am writing as the parent of CHILDS NAME (DOB) to request an assessment of his special educational needs under the 1996 Education Act.

I would like a statutory assessment for Child X as he is under school age, and I believe that he will also need extra help when he starts school, he currently attends:

PLAYGROUP ADDRESS

I believe that Child X has special educational needs for the following reasons:

My reasons for believing that his pre-school cannot on their own make the provision required to meet my child’s needs are:

It is my understanding that you are legally obliged by law to reply to this request within six weeks and that if you refuse or fail to do so I will be able to appeal to the Special Educational Needs Tribunal.

Yours sincerely”

This is not a sponsored post.

Starting School with Sensory Processing Disorder

September 11, 2013Education, Personal Postsachievements, Experiences, schoolSensory Seeker

Starting school with Sensory Processing Disorder was always was going to be a big achievement wasn’t it. And to go into a Mainstream school too (although I am still in denial that maybe he’s just not a little bit behind, after all he was in and out of hospital quite a bit at the start).

starting school experience with sensory processing disorder

Matters weren’t helped, in the confusion stakes, by the fact that my 3 other children went back to school last Wednesday, but that my youngest didn’t start until Monday. Fear not we made the most of those days (days to the play farm, picnics in the park, McDonalds, picnics on the beach) and he handled it all very well.

Brother helping his younger brother put his shoes on for his first day of school

Wednesday came and he was so excited. He didn’t realise he too had a book bag like his brother (who is in the year above) – did you know just how sensational a book bag can be?! And when it was time to get his shoes on he thought that his shoes were his brother’s (identical but one size apart); he’s never had proper shoes before (just trainers, crocs, and boots). To see my two youngest boys so lovingly together, the older helping the younger one on with his shoes was truly magical.

Brothers holding hands walking together in the rain on the school run

He settled in so well that I felt like a spare part not needed to be there. I could not be sad, I did not cry – how could I when he was just SO happy. He had a good day and was happy to come home with me to have lunch. All the way he was chatting, a lot of it I didn’t even understand what he was trying to communicate, but what I did interpret was the fact that he was very contented. I know he felt “big” and he told me he drunk milk (he keeps asking for milk at home now too). He obviously liked his 1:1 too (he keeps touching her face).

Two cheeky boys on their first day of school

Day 2 and he wanted to put his school clothes on as soon as he got up (meaning skipping breakfast as we do things in a certain order). But once I reminded him he had to have breakfast first he was fine. He did struggle at school after first break, and it affected him all afternoon, but really it was all to be expected. Most importantly he’s still really keen to keep going back again, and has gone in fine today. I was shown his painting from yesterday and he is holding his pencil a lot better too.

School seems to have really helped him grow up already. I can see a real change in him. Also it’s easier to explain about him doing things (for himself) if you ask him if he’s a big boy? Take this morning for example, he’d have easily let me get him dressed if I had let him. His clothes were already waiting for him, and he’d undressed and put his clean pants on and was carrying them. When I suggested that he get dressed, like a big boy, he did. I was amazed, so proud and that’s when the tears sprung to my eyes. OK the jumper was backwards, and I helped with the socks, but what an absolutely wonderful achievement.

You may also be interested in 10 Questions to ask when choosing a Primary School