Thursday, October 30, 2008

Pie come here

We had lunch at TGI Friday today.

After lunch, Jeremy briefly asked me if I wanted dessert and I said " no". All of a sudden Alex looked our way with glittering eyes and said "dessert".

We looked at each other and laughed and then asked him what he wants. He said "pie".

We then said to wait for Daddy to ask for the menu. All of a sudden, he shouted "pie ... Come!"

Cheeky Devil!

Also another milestone today, Alex drank the whole glass of orange juice using a straw. This is the first time he managed to do that. Call for celebration ..... Pie Come!

Tuesday, October 28, 2008

Discharged!

Well, I didn't want to say anything until I am sure of it.


If I have shared this much earlier, one thing will happen and that is my sisters reading this will get panic and either write or phone me to find out. I believe it would be the latter. My sisters, bless them .... cares deeply for me and me them.

About six weeks ago, I had this constant headache in the morning. It went on for four weeks and I thought I better check with my GP. He did some test on me and then prescribe pain killers (which I didn't want to take). He told me to get my eyes tested and would refer me to Wexham Park Hospital's Neurology Clinic (just to be on the safe side).

About a week after my appointment with my GP, I received a letter from Dr Wade's Neurology Clinic confirming my appointment on Monday, 13th October. Meanwhile, I called Boots to make an appointment to see the Optician.

Monday came, dropped Alex with my in-laws and went to the hospital for my 9:40am appointment. As soon as I arrived, I went in to see Dr. Wade, did some test, looking into my eyes with a torchlight, checking my peripheral vision and reaction etc. Was told that nothing's wrong but he would like me to get a blood test and a CT Scan (just to be on the safe side). Will see me in two weeks after receiving the tests results. In and out of the appointment in less than 15 minutes. Both Jeremy and I were wayyyyyyy impressed with the National Health Service.

The next day, I went to have my eyes tested. I need glasses .... I am astigmatic. I was told that I need glasses to read and when on the computer. Boo Hoo .... after dodging glasses for over three decades, I need them now.

Blood Test, Friday 17th October. Three tubes of blood were taken and Boy ..... it hurts but not too badly.

Thursday, 23rd October - CT Scan. Again in and out of the appointment in 15 minutes. Very impressed as well.

Yesterday, 27th October. Dr Wade .... all clear and I am being discharged. I was told that I have a round head and that I have a good normal brain. No malignant growth and my blood test also showed that my cholesterol level is normal (not bad for a thirty something hitting the 4 0 next year) I told Dr Wade that I am disappointed as I thought I was a genius and having a normal brain was not good news to me. We shared a laugh and Boy ..... am I relieved! 

All in all, I have to give top marks to every services I received from NHS and thanks to all the great people working for the service.

Sunday, October 26, 2008

Report from Consultant Paediatrician

Here's the latest report from Dr Irani after our last visit on Wednesday, 22nd October 2008. We received the report on Friday, 24th October 2008. 


I have only praise for Dr Irani as he is efficient and understanding. He knows what it's like for parents to constantly searching for answers and he try to explain to us and assure us that we are doing the right thing for Alex. 

Although the Internet is God sent, there are also many conflicting reports and very much out of date. It's best for parents to check with the Professionals before trying to make conclusions that may not benefit their child.

Dr Irani put us onto the right track with our latest doubt if Alex is Dyspraxic and may not be Autistic. If we persist that route, Alex may not get all the support he requires if the ASD label is taken away.

Here's the report:

MEDICAL DIAGNOSIS/CURRENT DIFFICULTIES:
  1. Generalised developmental delay (Mummy's note: Thank God it's not Global Developmental Delay)
  2. Speech and Language delay with severe phonological disorder and characteristic speech apraxia/dyspraxia
  3. Delayed fine motor skills with poor bilateral coordination
  4. Autism Spectrum Disorder
Alexander has made some remarkable progress with his social communication skills and has been attending the Rainbow Resource at Great Holland Primary School.
Following the recent Speech and language therapy review, you have somehow been given the impression that Alexander's improvement with his social communication skills and his prominent difficulty with speech phonology could mean that 'dyspraxia' is the unifying diagnosis to explain his difficulties. This is not correct.

In spite of recent improvement, Alexander's social communication skills remain impaired compared to another child of his age. He demonstrates ritualistic behaviours and motor mannerisms (and these were evident in the clinic today). Hence the diagnosis of Autism Spectrum Disorder is entirely appropriate.
'Dyspraxia' does not exist as a medical entity within international diagnostic classification systems, although we all understand what this means. Developmental Coordination Disorder (DCD) is a valid diagnosis for marked impairment in the development of motor coordination that significantly interferes with academic achievement or activities of daily living. However, for a diagnosis of DCD, the child should not meet criteria for Autism Spectrum Disorder and the motor difficulties should be in excess of the child's developmental delay. This is not the case for Alexander.

In my opinion, it is best that we do not all get too focused upon using complex terminology to describe Alexander's difficulties, but rather focus upon what approaches would be most appropriate to meet his range of developmental and education needs.
Observing how he struggled to form the appropriate words in the clinic today, I am  very supportive of the Speech and Language Therapist's observation about Alexander having an apraxic/dyspraxic speech difficulty.
Alexander also has significant difficulty with his fine motor, balance and coordination skills. Both of these would require that Alexander receives appropriate support from the therapists and also within the education setting.

I shall review Alexander's progress in my clinic in approximately a year's time. If you have any queries or concerns in the interim period, please do not hesitate to get in touch with me.

The wicked step parents

Alex ..... Is one difficult child to talk nicely to .... sometimes.

Seriously, Jeremy and I sometimes feel like we have to shout and be stern with Alex to get our message across.

Everything is a joke to him. He doesn't know when to stop, when to listen. And when he is in such a silly mood outside, it's not always possible to talk nicely to him.

To a stranger listening, we sounded like step parents or we are talking to a dog rather than a child.

It's the only way to get our message across to Alex by simplifying language. Alex has his moments, he is not always like that but when the Autism part of him takes over, that's when we feel ashame of ourselves for talking to him like that.

Sorry Alex, mummy and daddy loves you to bits but we had to.

Saturday, October 25, 2008

Report from Rainbow Resource

This report was written by Mrs Dunham for Meath School visit on Tuesday, 21st October 2008.


Mrs Dunham was kind enough to accompany us to the school and was as impressed as we were. She believe that Alex will thrive at Meath and will do her utmost best to help get Alex into the school.

Meath School is a non-maintained special school run by the I CAN charity. A charity that helps children to communicate. It has consistently received outstanding result from OFSTED on all categories and is ..... quite expensive.

Here's the link to the school for those interested: http://www.ican.org.uk (click school on the left hand menu and then Meath School)

Now back to Mrs Dunham's report

Alex started Rainbow in May 2008. He is currently in his second term at Rainbow. He is diagnosed with Autism Spectrum Disorder in May 2007.

Alex is a very loving and friendly little boy who smiles a lot and tries hard to please. He likes to be close to adults and needs persuasion to play with other children. He is a little nervous of crowds of children and new events and will try to hold adults' hands and stay close to them.

At Rainbow Alex is quite passive and compliant. He will respond to prompts therefore demonstrating understanding of simple instructions. His speech is very unclear but he tries hard to reproduce the sound patterns of language - he will also sing along to the tune of a song but not the words. Alex's attempts at speech are sounds. He often needs reminding to open his mouth to make a sound clearer but understanding is usually by guesswork rather than a clear word. Through practice he has a few clear words such as "Herow" (hello), "ba ba" (bye bye), and "More choos" (more juice). However, production of these words often requires a prompt as he is just as likely to "say" the word with his mouth closed.

Alex uses a visual timetable that gives his time at Rainbow some structure. Without it he can be a bit aimless and follow adults around. He really likes chasing games and rough and tumble play. With planned activities Alex will wait to be helped but responds to lots of encouragement. At Rainbow we don't use PECS with Alex but we do use Picture symbols to support his communication. This is because his speech sounds are unclear and he will use different sounds to say the same word. Alex uses his symbols book to make choices such as choosing colour, a toy to play with or a snack. Alex does try to comment on things and respond verbally and does persist even when he is not understood. When responding Alex has developed what appears to be a stutter where he gets stuck on the first part of a word and repeats it over and over.

Alex is quite clumsy and finds it difficult to climb up a low step without support. His fine motor skills are weak and he needs support to use a pencil to make a firm mark on paper and to use scissors. (Mummy's note: Alex can climb stairs, steps and stools on his own when there is no adult present. He has this habit of asking help even when he doesn't need any. I noticed this when Alex thinks I'm not looking - his teachers fell into cheeky Alex's trap .... ha ha suckers)

The Curriculum Based Developmental Profile (CBDP) shows Alex is mainly working at between a 0 - 2.5 year level (p levels 1-3) in most areas. Physically he is working at a 2.5 - 3.5 year level (p levels 4-5). We found that he understands and can follow most simple instructions. However his huge difficulties with speech production impinge on all areas of the curriculum and it is difficult to gauge what he does and doesn't know.

Alex is very compliant and extremely willing to please. He needs intensive support with his speech and communication. He is currently undergoing a thorough speech and language assessment and the pediatrician has also been asked to carry out an assessment of his fine and gross motor skills.


Report from Speech and Language Therapist

Since my last meeting with Mrs Dunham and Becca at Rainbow three weeks ago, Becca reassessed Alex and here's the Progress Report dated 17 October 2008 which I would like to share with you. Most people feel that reports should be confidential but I would like to share this because it may help someone .... someday.


BACKGROUND

Alex was given a formal diagnosis of Autism Spectrum Disorder in May 2007 following a Multi Professional Assessment.

Alex started Rainbow Resources in May 2008. Since starting in Rainbow he has received regular group and 1:1 therapy from the Speech and Language Therapist (SALT). In addition he has had his functional communication reviewed regularly by the SALT and communication programmes have been integrated into everyday activities within the resource setting.

Information for this report has been gathered from observations in the Rainbow Resources and the nursery, formal and informal assessment and discussions with Alex's Parents and Education staff.

ATTENTION AND LISTENING:

Alex is able to sit and participate in circle time and listen to stories with minimal prompting from the staff. He is able to sit and wait his turn during group activities. He participates in activities with adult support to keep him engaged and focused. Alex responds to adult direction.

VERBAL COMPREHENSION (UNDERSTANDING):

Alex's comprehension was last formally assessed in January 2008 and was found to be mildly delayed for his age. Further informal assessment and observations have been carried out since this time to assess his functional communication.

Alex has demonstrated understanding of situation requests (i.e. put your snack box in your bag) and routines within the resources environment. His understanding is aided by gesture and signing. Alex is able to follow short instructions directed to him individually and directed to a group.

Alex recognises familiar objects and their uses. He is able to understand verbs and some conceptual vocabulary including colours. He is consistently able to follow 2 information carrying word level commands i.e. "make teddy sleep" and his 3 information carrying word level understanding is emerging. (Mummy's note: Alex is able to understand more than the SALT thinks he can. His speech is limited hence it's difficult to determine how much he understands)

EXPRESSIVE LANGUAGE:

Alex is communicative and gets his message across using a combination of verbal and non verbal communication. He is able to request, choose and comment verbally using single words or two word utterances, however his speech is frequently difficult to understand and his length of verbal utterance and use of grammar is delayed for his age. He supports his speech using a Picture Communication Book, gesture, signing, intonation and pointing.

Alex smiles and laughs to express enjoyment. He is able to request help and to refuse verbally. Alex is able to say "hello" and "goodbye" verbally.

Alex continues to copy adult's utterances with both immediate and delayed echolalia.

Alex's expressive language skills are delayed and disordered when compared to his peers.

PHONOLOGY (SPEECH SOUNDS):

Alex's phonology has been assessed using the Nuffield Dyspraxia Assessment. The assessment has highlighted that Alex has a severe phonological disorder with characteristics of dyspraxia.

Alex has difficulty articulating several consonant sounds and he uses only a limited number of vowel sounds. Alex struggled to accurately and consistently sequence consonant-vowels and his rate was observed to be very slow. When naming pictures with single words he was observed to make several delayed articulation errors including missing off the ends of words (i.e. "bed" was said as "beh") and reduplicating the first syllable of a word twice (i.e. "garden" was said as "gaga"?. In addition he demonstrated several disordered characteristics including the insertion of glottal stops and distortion of vowels when naming pictures with single words.

Alex demonstrated oral motor difficulties including being unable to imitate tongue movements and lip positions on request.

SOCIAL USE OF LANGUAGE:

Alex initiates interactions with adults. He is able to use his language for a variety of reasons including requesting items, commenting on what he sees/hears, ask questions and use social language. Alex is able to use names of familiar adults and himself.

Alex will use eye contact when he is talking to an adult. Alex finds it difficult to initiate interactions with his peers appropriately and requires adult support to do so. Alex's play is frequently repetitive and he generally plays alone or watches his peers. Recently Alex has become anxious when playing in the playground or in nursery and requires a high level of adult reassurance to do so. He seeks out adult interactions over peer interactions.

SUMMARY:

Alex has a formal diagnosis of Autism Spectrum Disorder. Alex's receptive language, expressive language and social interaction are delayed and disordered when compared to his peers. Alex has a severe phonological disorder with characteristics of dyspraxia.


Total frustration

It's been two weeks since I updated my blog. Two days ago, I sat down and start writing what's been happening to us. Guess what happened?

It took me 2 hours to write and finally, it was ready to publish ..... Pressed "publish now" plop ... Blue screen with an error message. Everything that I have been doing was gone because Blogger.com was under maintenance!

#*$£ .... I was so upset that I had to walk away before I smash the laptop. It's not easy to find time to sit down to write. I should have known .... Next time, write them offline and then cut and paste. There, learn something new the hard and frustrating way. I have now downloaded a new software on my iPhone and can now update my blog wherever.

Just thought I'll try it out before I write another long story and findout it's not working. Work smart this time. Will follow with account of the past two weeks.

Friday, October 10, 2008

The very bossy boy

Once upon a time .... not too long ago .... just this morning in fact, a little boy name Alex has been really cheeky and bossy.

Jeremy came home from work and was about to have his shower, Alex wanted his first, so .... as usual, the young prince is priority and he had his shower. After shower, he went into his play room and start doing what he does best .... thrashing the room.

While he was "playing" Jeremy came to our room to get ready for shower and one thing led to another, we engaged into a conversation about you know who ... and his cheeky antics.

Alex heard us talking about him in the other room and came into ours and said "Da da go go go bath" and then very sternly said "go go" and hurried his dad to the bathroom.

That is one complete sentence (but with a little stuttering) and he knows what he wanted to say. We were so happy and said "Good talking, Alex" and he was so pleased with himself.

Progress .... with an attitude - LOL

Thursday, October 09, 2008

We received good news today.


Alex could see Dr. Irani sooner than scheduled. His secretary called today to inform us that there is a cancellation and she is able to fit Alex in. Instead of November, we could see him in 2 weeks time.

Mrs Dunham and Becca (ST) will be writing their reports to accompany our visit to Meath School in Surrey on the 21st this month. Looks like everything is in motion quicker this time round. When we get Dr. Irani's report, the Occupational Therapist report will follow and we could submit to the Local Education Authority for a revised Statement for Special Education Need.

We hope things would go smoothly and that Alex could get the help he needed as soon as possible. 

Wednesday, October 08, 2008

OMG My Niece lock me out of her BLOG.


I have a link here on my blog to my niece Erin's and guess what I found out? I wasn't invited to read her blog :-(((

I can't believe it ........... her favourite Aunt (I hope). 

Anyway, I still love you very much and I still will spend all that money to come to your BarMitzvah. The only things is ..... now that I am not invited to read your blog ..... hmmmm what am I going to get you for your birthday????

You've been warned KID!!! LOL

Couldn't be sweeter

Although it's 1:30 in the morning, I was half asleep and don't mind continue to do so ..... Alex came into our room and walked straight to his dad's side of bed.

This is something new as Alex comes to me all the time. Jeremy was at work all day yesterday and did not see Alex when he got home. The last time the father and son were together was when Jeremy read Alex his bedtime story on Monday night.

Alex and Jeremy are very close and I am very proud of that. I called Jeremy at work yesterday afternoon and put it on speaker phone. Without prompting Alex, he said "Hello Da da" and then "Bye Bye Da da".  This is progress as I had to prompt him what to say, usually.

He came home with his daily activity report yesterday with the following comments from his teacher:

Monday: Alex practiced counting using the whiteboard, in PE we had an obstacle course, Alex practiced kicking the ball and throwing the bean bag, Alex put on his own socks and shoes after a 10 minutes stand off (ha ha ha ... that's about right)

Tuesday: Alex practiced numbers on the whiteboard. They played a turn taking game. Alex used his PECS at snack time and his speech became clearer too. They played in the shaving foam and sand.

It's great to hear that his speech is getting clearer. I read somewhere about using PECS helping children with verbal apraxia to speak clearer. It's a visual prompt that somehow convey the message better to the brain.

I read so much and did so much research that I cannot recall where I got these information. 

I have been suffering from dull headaches lately and went to the GP last Friday. I wasn't told anything but was given a prescription for pain killers. I wouldn't want to take those if I can help it. I was told that he will refer me to a Neurologist in Heatherwood or Windsor but meanwhile, make an appointment to see an optician to get my eye tested.

I think my headache is due to information overload and perhaps a dash of old age on the side. Do I finally need glasses after dodging it for years? I am the only one in the family who doesn't need glasses or contact lenses. Looks like I am not that lucky after all.

Back to Alex, we had a letter from Meath School in Surrey confirming our visit date and we are bringing one of Alex's teachers with us to see if the school could offer what Alex needs.

Will update when we see the school but we have done our own research and the school received great report from OFSTED and has a very good reputation.

Saturday, October 04, 2008

Out of curiosity, I googled Apraxia misdiagnosed Autism. Here is an interesting article:


What is the Difference Between Apraxia and Autism?

Posted in Health & Fitness on May 5th, 2008

Apraxia and autism are two entirely different neurological disorders which can occur in a child independently of one another, or together in the same child.  While autism’s symptoms can impact and impair many different systems, behaviors, and thought patterns, apraxia occurs when the child struggles to plan and carry out voluntary physical movements. 

In terms of gross motor skills, apraxia may impact a child’s capabilities to stand up, sit in a chair, or catch a ball and with fine motor skills, a child may not be able to zip up a jacket, button a shirt, write or print, or even point at an object.

Children with apraxia may also struggle to produce sound patterns to make words, or even coordinate the various speech mechanisms to make the individual speech sounds such as the difference between a “g” and a “b” sound, or the hum of an “m” sound.  Even when a sound is modeled, a child with apraxia may not be able to mimic the same sound. 

However, though these symptoms may also cross over into autism, there remain important differences between the two conditions.  For example, when a child has only apraxia it is only the motor functioning and not the social and emotional skills that are impacted, as is often not the case with autism.

Apraxia and autism can become difficult to tell from one another when the child is exhibiting symptoms of verbal apraxia (officially known as oral-motor apraxia).  The reason for this is that children with either condition can be very aware of their struggle to communicate verbally, and therefore they may choose to avoid having to talk by staying away from social situations.  However, in the case of verbal apraxia, if you play with your child and don’t demand speech from him or her, you may find that they begin playing actively and engage others in their play. 

The child usually experiences relief from being able to socialize and have contact with others without being required to talk, which is frustrating for them and can create a fear of failure.  Often, with these children, when they are allowed to select the type of play and are allowed to go without having to speak, the relief and comfort they feel can make them more open to accepting the slow introduction of new sounds and syllables, which may eventually bring about simple words into their favorite games and play. Encouragement to vocalize or verbalize should be gentle in both apraxia and autism, and should be gradual, tailored to the pace of success rather than to a schedule.

In both motor apraxia and autism, children show social interaction problems, but in the case of motor apraxia, this is normally because they are not always capable of performing the physical movements that allows them access to others.  However, motor apraxia won’t usually make a child want to avoid social interaction altogether, such as failing to make eye contact, or specifically moving away from other people. 

It is easy to see why there is so much confusion between apraxia and autism spectrum disorders.  Especially considering children with these conditions can also both exhibit signs of over-reactivity to sensations.   However, there are differences between the two and it is important to speak to your doctor or a specialist if you are unsure.  Your doctor will be able to determine which condition your child may have, or if both are present.

Grab your free copy of Rachel Evans’ brand new Autism Newsletter - Overflowing with easy to implement methods to help you and your family find out about apraxia and autism and for information on levels of autismplease visit The Essential Guide To Autism.  

Wednesday, October 01, 2008

Sooner rather than later.


Last Tuesday, we received a note from Alex's teacher. She wanted to see us and asked for a convenient time. I was really worried and asked Jeremy to ring Mrs Dunham to find out what it's all about because the end of term review was scheduled for end of this month.

Mrs Dunham said that it's nothing to worried about and that she wanted to find out from us if we have any objection that they keep Alex a little longer in Rainbow. The teachers and speech therapist feels that he is not ready to join the bigger class in January due to his lack of speech.

The meeting was yesterday. I went to see Mrs Dunham and Becca (ST) alone as Jeremy had to work. The meeting was not as what I expected as it got a bit heavy towards the end. I came out feeling rather stressed and confused as I haven't had enough sleep for two days. (The sudden change of temperature caused some discomfort to Alex, sniffing all night long. Hence no sleep for Alex and mummy.)

I brought to Becca's attention last term that I suspect Alex has Apraxia of Speech. At the time, she felt that it was too early to diagnose Alex for Apraxia.

In our meeting yesterday, we discussed that Alex is way behind his peers in expressive speech and fine motor movement i.e. writing, drawing, cutting, pasting etc.

They suspect that he may be Dyspraxia and Becca asked if I have any objection if Alex were to be re-assess for Apraxia.

I can't really remember how the whole conversation came to a hint that suggested Alex may not be Autistic as he is far too social for an ASD child. Of course the teachers cannot say for sure as they are not trained to diagnose any disorder. However, they have seen and taught many children within the spectrum and could see Alex being the odd one out.

Becca feels that Alex wanted to talk and communicate unlike a typical Autistic child. She noticed that when Alex wanted to say a word or repeat a sound, they seem to jumble up and turned out a different sound - a typical example of Apraxia.

If Alex is diagnosed with Apraxia, he will need more Speech and Language Therapy. The teachers suggested a school which they feel is more appropriate for Alex as Rainbow cannot offer the type of help he required. Although we have concerns for sometime that Alex may not improve in time for mainstream school, my heart sank. 

The school that they suggested is an independent school in Surrey that specialise in communication and speech. Our Local Education Authority will have to pay for the fees which means we have to review his Statement for Special Education sooner than expected. It would be more appointments, more assessments and perhaps we have to fight with the LEA for our rights to send Alex to a fee paying Independent school. I heard from other parents that it would be a hard and long road. Just when we thought Rainbow was the answer .....

I guess telling us now is better than having to complete 6 terms in Rainbow and still no improvement. 

I am grateful to the teachers for making an effort to find the right help for Alex, it shows that they care.

It looks like for the next few weeks or months, I will be very busy visiting different schools and taking Alex to assessments. 

No time to wait and see. It's now or ......