Speech Assessment

We had our speech and language assessment the other week.
W was observed at play, I was asked numerous questions, and W was then given 'tasks' to perform, so that his ability and level could be observed.
Apart from the lack of words, he is doing everything that is expected of a 27 month old.

I was advised to do the following -

• Reduce the amount of words within a sentence
• Go back to basics and use noises for things, such as "shwwwissssh" for water out of the tap
• Offer him two choices of toys or food/drink
• Sabotage this at times by offering something he will not like and something he does
• Keep on using the basic picture books and not use a negative if the incorrect picture is pointed to, just remark on what he has pointed to
• Use photo pictures for him to request (similar to PECS)

We were told to wait six months and then go back.

Two days ago W had his two year check with the health visitor.
I had requested it for a home visit as he is much easier to assess when relaxed with his surroundings.
The HV was fab. She was friendly and chatty and keen to learn about W and his eyes.
When we discussed his lack of words, she said to relax. It is not something to begin worrying about until he is around 2 and a half. She said the combination of being a sibling and having his middle brother talk for him, being a boy, and his eyes, can be a delay.
As he understands everything, does tasks requested, role plays with teddies and cups and spoons and can make his needs known by either pointing or taking me to what he wants, or by making his noises, he is doing just fine, for him.

W seemed to progress along with his peers, verbally, at first. But he did'nt continue to learn more words or continue to use what he had already spoken, and this made some feel I was lying about his abilities. It happened around the time he became more mobile and I feel that because he was concentrating so much on the physical aspect of his development, his verbal skills dwindled.

What has made me so happy this week however, is that W is really trying to repeat words now.
Only on his terms though - so if tired or just playing a game of smiling at me and refusing to repeat, he won't play ball.

Quite funnily now though he has started to repeat a word, almost perfectly clear for a stranger to understand as well - "SpongeBob". As in SpongeBob Square Pants - a favourite cartoon of his middle brother. When the theme tune comes on, he stops still and looks towards the t.v, and then 'sings' along. It's more "ba ba ba ba" but it is in sync with the words being sung.

He says "Maaa" for Max the dog. "Ouuu" for out. "Uuuu" for up. "Doww" for down. "Mar" for more.



He is getting there and he is just perfect to me.

Education

My eldest son, J, who has autism (and for whom I write the other blog for), has been in the special schools system for around 5 years. He never started in mainstream at all. It was decided at nursery level that mainstream would not suit him, and so I never had a fight to get him suitably educated.

It is completly different with W.
There are no vision impaired schools, at all, within our local authority, and then there is only one school further afield ( 35 miles away) that is suitable from the age of eleven, and even then it would be a battle to get him in there due to red tape in opposing councils.

So W will have to attend a mainstream school. He will have to learn alongside fully sighted chidren.
He will get no real 'extra' help either.

The school would be able to apply for extra money to finance certain special equiment such as large print text books, a tilted table (if it helps him to read with his null point), marking stairs and steps out clearly with yellow, and perhaps an assistant that would shadow him and ensure he is confident moving around the school. The assistant though is usually a no no though as councils deem it too expensive, and as he is not in need of acute medical care, it is more a lifestyle assistance, they can, and most often do, refuse.

I feel very uneasy about sending him to mainstream.
I am not talking about sending him to a special school like J's which is set up for learning difficulties, as W appears to be neuro-typical, and it would not be suitable.
I do however feel he, and the many other children with vision impairment and blindness should have a school dedicated just for them.
Every aspect would be designed with their needs in mind and all the children would be comfortable in their surroundings, with staff fully converse in sight impairments.

In a mainstream school I would be on edge all day worrying about him. Tripping over simple objects. Falling up or down stairs or steps. Banging into walls, tables, chairs, doors, other children etc.

If you looked at the first video I uploaded in the previous blog entry you can see an example of how he sees stairs. He can not distinguish them at all.
This applies to other everyday things such as tables which are a similar colour to walls or floors. His eyes can not see that they are separate and therefore he is more likely to bump into them. Children are little whirlwinds, W no exception, and whizzing about here there and everywhere, playing chase games, he is likely to crash into many things.

I know children need to be children, but he is my baby and my need to protect him is immense (like most parents).
I want him to be able to learn with appropriate tools that are not different from everyone elses and where he won't be singled out as the 'special needs kid.'

It is early days still, I know, but sitting back and just hoping is never going to achieve much.
I may well have to fight for him to have an assistant to aid him in the first few months. To help him learn the layout of the school. To educate the children into why sticking their foot out to trip him up will not be tolerated. To make sure their resources for him are suitable. It's always a fight though.
Readers of my other blog will know how hard and how much I have to (as well as many other parents do too) fight for (sometimes) even basic things. This is another battle I have had to undertake, and although it is stressful and tiring, I know that I am doing it for the well being of my children , and that is always a good thing.

An excellent (but sad for me) video of what a person with Nystagmus sees. Please watch.

Please please watch this video.
It is applicable for my W from the 2min 55sec mark right to the end.
Please read each part and look at the examples depicted.
It it quite saddening for me to watch as my boy is just so precious to me, and no matter how much I try to understand about his wobbly world, it still makes me sad that he will have to live like this for life.
The part depicting the steps is very true.
I have to guide him when outdoors as he can not distinguish where a step starts as it merges into the floor.
The video link is safe. It is not spam. It is uploaded onto YouTube.

Watch from 2min 55 seconds....

http://www.youtube.com/watch?feature=player_embedded&v=RrqdFKs2Hzw



And if you want to see an amazing woman that has nystagmus, watch this YouTube video.
She is eloqent and really easy to understand.

http://www.youtube.com/watch?v=jsOLLBcwxcY&context=C4ed9be3ADvjVQa1PpcFPxYy0-_KfxR2MVcaX4Q-JkIa_wdPimbVg=

The MRI scan and learning to play

The information sheet was read and re read by me. Detailing where we  were to go, at what time, and what to expect.
I focused on minor issues such as having to starve him for such a long time prior to the GA (general anesthetic). I spoke directly to the anesthetist who said I could reduce the time for starvation as he was solely breastfed and therefore milk passed through quicker in his tummy. This made me relax more, as I was a demand feeder and couldn't bear the thought of holding my baby to comfort him, all the while him crying for milk, smelling milk, but being denied it.

The day arrived and we set off early. The waiting room we had to sit in was already bustling with staff, children and parents. There was an atmosphere of tension between us parents as we pondered the upcoming procedures on our children and the feeling that each of us wanted to go down first.

The moment I had to hand my little baby over to the anesthetist (I was not allowed into the room at all) was surreal. It felt wrong. I was meant to hold him. I was told to leave the waiting room and go elsewhere and occupy myself, as the room was not for waiting in once your child had been taken off. So I wandered round the little shopping mall within the entrance of the hospital and then sat and had a drink in the Burger King outlet also within the hospital.
I made my way back when the bleeper they gave me went off.
I could hear him crying and was ushered in. He was screaming. I finally got him to latch on for a feed and he settled down back to sleep, and he stayed calm like this until our departure and journey home.

The results were ready within a few weeks and all was clear. We knew it would be as I trusted (and had prayed) we would not be given all bad news.

As he was (and still is) so young, it is hard to know what his sight will be like in the future.
I do know that his vision has increased as he only responded to light from around half a metre, which then increased to a metre.
When he began crawling he initially was quite tentative about moving about. His natural desire in built in his development was urging him to move and discover but his sight made him scared of what was beyond his field. A few weeks of encouragement and became a little whizz. Speeding around and discovering the joy of emptying cupboards. He found he could crawl up right on his knees and hold an object in each hand and one in his mouth.
Walking took it's time to develop too.
Again he was unsure as his view had now changed to being higher up and there was a whole new world up there.
Within the home he was confident. He learnt to use the stairs very quickly and was adept at going up and down quite safely.
As he had learnt the lay out of the house he never really experienced many knocks and bumps. He did have a few toddler accidents which I feel could have easily occurred despite his vision.

Out of the home however he was shy and clingy.
I always carried him in a papoose ( a baby sling wrap) which enabled him to be close to my face so he could see me and hear me and not be 'lost' in a pushchair with the noisy world whooshing around him.
As an example of his fear of the outside world, I could be standing in a shop queue waiting to be served, and the person behind me strikes up a conversation about some trivial event. W would thrust his face into my chest. He would occasionally peek side ways out, but would shoot back into hiding.

This made it difficult for assessments on him. By this time we had been assigned a paediatrician. A cold, sterile room, with a stranger talking in a very strong foreign accent was not conducive in eliciting much interaction from W. He didn't want to take the little coloured bricks from the paeds hand. He didn't want to look at her at all. He just sat on my lap, face buried into my chest, and crying when made to turn round.
I would tell the paed that the tests she wanted him to perform, he was able to do. He did them at home. He had no problem passing toys between hands. He had no problem grabbing a toy dangled in front of his face. But because he wouldn't 'perform' for her, she was sceptical.
She also focused way too much on bowel habits. Over the top in fact. We were not there for bowel problems and it annoyed me!
Her first letter which we were 'CC'd' in on stated he had constipation as his FIRST problem, not his vision loss! He didn't have constipation at all but she was rigid in her belief that an older baby/toddler should be going every day, despite a regular pattern of every other day (perfectly normal by all other opinions).
On our second appointment the same situation occurred. The paed then said she wanted W to be assessed by a specialist in children with vision loss as she had no experience - why was she assigned to us then?
This assessment was eventually carried out at our home, as the paed wanted it to be held in a different office room in another building, but I continued to protest that he would not 'perform' for anyone in these strange and scary environments. At home he would settle far quicker to a strange voice.
I actually contacted the specialist directly and spoke to him, explaining my plight, and he readily agreed that my home would be far better an idea - cut out the middle woman and we started to get somewhere!
The assessment was similar to most development check ups. W demonstrated he could follow direction and requests. He showed off his incredible physical ability of flying up and down the stairs.
The report sent to me afterwards was glowing for W's development, where he was above average for many skills, but below average for his speech compared to visually able children, but still within accepted norms for vision impaired children.

I like to think that my relaxed approach to W has helped him become so confident. I never followed him round trying to protect him continually as I felt it would give him a complex. I obviously played with him and played chase games, but I wasn't fussing and faffing that he would bang his head on everything. I suppose having another child with special needs enabled me to be more confident myself and it certainly made me more forthright with specialists, as I was used to their tactics and expectations.

When W was a young baby I went OTT with light up things and bold black and white patterns.
His crib was filled in all visual directions with these patterns and I fashioned a fairy light contraption that dangled above him. I was all too aware that early intervention was essential. Stimulating his eyes and their responses to his brain.
I never left him alone with these though as I worried about the what ifs.
I also began to sing aloud all day long.
I wanted W to always know where I was and by singing I was encouraging him to have fun and it was less boring than hearing me talk nonsense.

Toys were bought with the element of bold patterns and textures. W would need someone with him during play as if a toy rolled even slightly away he had problems locating it visually. He soon cottoned on to basis that if he swept his hands around he would be able to find the missing toy.

As he grew, his middle brother became integral in his playtime. O, his middle brother (aged 6), began to love W as he responded to him and actively wanted him to play with him. Simple tickle games and roll the ball became their bonding time. As W would respond to O's games with giggles and belly laughs, it encouraged O to continue playing with him.
O still does not really comprehend the full scale of W's eyes. He knows they move about "like this mummy" (he wiggles his own eyes to show me) and he knows he needs to help W, sometimes either getting him out of trouble (when he gets stuck) or by finding his missing toy, but the understanding that W's eye do limit him and always will is not comprehended, and to be honest I don't dwell on it or talk about it as W is his brother first and I don't see why O should have to take on so much, so young.

Welcome to W's Wobbly World!

Hello!
I am a seasoned blogger and have taken the step of writing another blog, this time dedicated to my youngest son, W, who was born in Feb 2010.
He has wobbly eyes.
The medical terminology is 'Nystagmus'.
As he was born with it, and they have ruled out any explanation for why he has it, the full label is 'Congenital Idiopathic Nystagmus'.
He also has low vision, which I must say has improved since he was last seen by the eye specialist, which is going back to August 2011.

Even before he was born I sensed he was going to be poorly at birth. That mothers instinct. I had never felt it before with my other two sons, but had done when carrying my third child, who I sadly lost in my second trimester. I had a feeling that that baby and I were not destined to meet and I lost her on my middle son's 3rd birthday.
I fell very quickly for my youngest son W, very soon after my loss. I had several early scans to keep an eye on him, but towards the end of pregnancy I just felt odd. I felt that he needed to be with me, now, as inside my tummy I could not hold him and nuture him in my arms.


I had a four day failed induction. It was agony. The pessaries that are designed to soften the cervix
to encourage the breaking of the waters did not do anything. Nada. Not one milimeter of change - over four days and 7 pessaries. It did however render me incapacitated in walking normally and every step hurt.
The medical team however suddenly decided that I should go home for a week or so and come back. I argued that they had wanted him to be delivered, as I developed gestational diabetes during the pregnancy and they wanted me not to go overdue. This in part was because my middle son was born, naturally, weighing 10lbs 8oz, and he was not even classed as over due.
I found out that there were no slots available for a cesarian section as they had had an influx of emergenices and booked sections. This was why they wanted me to go home.
I stood my ground. They had forced chemicals into my body to make it start labour, stressed my body out with it all (and goodness knows what it did to W) and then shrugged and said 'go away'.
So after many, many conversations with the team (never the actual consultant himself, just his minions who do his dirty work and take the flak for his decisions), I was booked for a semi emergency section.

When W was delivered he needed oxygen (quite normal for section babies I was told, due to the sudden emergence from the womb). He was not given to me for around five minutes and I was becoming really anxious to have him.
When finally he was given to me - swaddled tightly and helped propped up against me by a midwife - he had the most grumpiest face I have ever seen. Scrunched up eyes and such a frown.
But then, his eyes opened and we saw each other for the first time, reflected in each others eyes.
He was beautiful.
And then he started rooting ( looking for breast milk). My other two babies had never done that and it was funny to see this natural instinct kick in with him.
Sadly, because of the section my milk took four days to 'come in'.
W had very low blood sugars and was heel prick tested every three hours. His feet turned black from the bruising of the constant needle punctures. He was also cold and needed to sleep on a heat mattress and swaddled up like baby eskimo.
I requested to see the placenta (I am interested in the amazing way our bodies support growing babies in utero) soon after birth, and the midwife wheeled it in on a trolley.
She did her assessment of it with me watching as she saw how interested I was with it all.
What was apparent was the colour. It was grey. Not pink or red. My other two had been pinky red. The time lapse from delivery was not the cause as it was not hours since then.
The midwife commented that my boy was lucky to be outside and not inside with what appeared to be a poorly placenta.
That gut feeling. I knew he needed to be born. I still linger over the what ifs. What if I had just accepted being told to go home and wait another week? What could have happened?
As for getting him well again, well the second my milk came in, W latched on (clever boy!) and it did the trick. His sugars rose almost immediatly and he settled down so much better.

Around the age of four weeks I sensed his eyes had a problem. I thought he was blind. But I told no-one. I was scared. I thought I was being over the top with paranoia.

I asked two friends of mine who had had babies within a week of me about their babies eyes. I noticed W's pupils did'nt react to light. He did'nt squint at sunlight. I tested him by standing at the window, curtain closed on a sunny day, and then opening them, and he did'nt react. They said their babies did.

At six weeks I mentioned it to my husband and he replied instantly that he thought the same but had'nt wanted to tell me.


We had a health visitor review at my house and I told her my worry. When W latched on for a breast feed his eyes wobbled and she came and stood over my shoulder to watch. She agreed it was not right..
To have someone agree with you makes it all real. Not just your imagination. Not just a newborn quirk - eye muscles can be weak at birth as baby has not really had to look too far in the womb!)
The health visitor said she would book a referal that afternoon to the eye clinic.
But she called and told me that in our area babies are not refered until at least nine months old (!) and that there was also a ten month waiting list on top of that. So my baby son with an eye problem was not going to be seen by someone until at least 19months old? I don't think so. In fact I knew so. I was'nt going to let them dismiss him or me.

I spoke to my cousin, K, who was (back then) a 2nd year medical student. I mentioned his eye movement and my fear he was blind, and she said she thought it was nystagmus. As we spoke on the phone I googled it on the laptop, and as she spoke I read and I concurred with her that it did indeed sound like nystagmus.

The next week I spent my life on Google. Bad bad bad. I was in a state.

The following week we had our six week postnantal check up at the doctors. I went first and everything was healing as it should apart from one area, but I did'nt care, I just wanted to get onto W.

I explained to the female doctor about my worry and what I thought it was.
She laughed. She told me it was very rare and could not possibly be that. She mocked me for getting way too ahead of myself.
And then she looked at him. She ummed a little. She got her stethoscope out and dangled it over his face and moved it side to side. She ummed again. She then started counting out loud."One,two,three"
She backtracked and said she too thought his eyes were not behaving as they should and that he was not able to follow the stethoscope as she moved it (babies at six weeks should follow an object held close to their face hence it being a part of the general six week check up).
But then she told me to give it a few weeks. It would probably settle down. His eyes only moved 3 beats at a time, side to side and then stopped for a few seconds, so it might settle down.

It did'nt. In fact it got worse. More beats side to side. And then up and down. And then corner to corner. It was so bad I could'nt look into his eyes like you would a new born. It made me so upset.

I took him back for a second opinion and had done some research into private investigation.
This doctor too was sceptical at the start, but she then agreed that his eyes did need attention. But again she told me what the health visitor had told me - no referal till he was 9 months old.
I then mentioned I would pay for a referal and to see the specialists at the hospital. She said we could see someone the following week then! Money talks it seems.

I was still Googling away and found evidence of brain tumours being linked to up and down nystagmus. It's very rare that it would be a tumour, but it was still a risk. I knew an MRI scan would be needed, long before I spoke to the eye doctor.

Our appointment was where the NHS patients were, but we were treated with a red carpet - all because we were paying for it.
The first person we saw conducted simple light tests. We held him in front of a fan so that the cool air made him open his eyes and then she held a light up wand thing and waved it slowly around him, moving it.
He turned his head! I exclaimed out loud " he can see, he can see" and started crying. I really really thought he was totally blind. He turned his head to wherever she moved the wand to. The distance was only probably 50cm away, but still, he could see!
His eyes did not follow as you would expect, but his head did, and that proved he was aware of the light.
I think my reaction brought it home to the woman conducting the test, that these were real emotions and built up worries, and she gave me the wand to keep!

We then saw the main man. The eye man. He looked at his eyes. Read the basic results. And then mentioned softly about the brain tumour risk, as he was concerned about the rotation of his eyes. As I had already read this it was not a shock and I was actually relieved he was taking me seriously.
W would need a general anesthetic as the MRI would take around 45 minutes and a baby can not be expected to lay perfectly still all that time.

The main eye doctor escorted us personally to the lifts and was so courteous to us. It is amazing what paying for private treatment does really.

I then had a letter come through the mail with the date of the scan.

I will continue this in my next blog entry.