Speech Therapy

Today is Rayyan's 4th session with his new speech therapist, Ms Komathi, and I must say that I am happy with the progress that he's making. His sessions are more focused on strengthening the muscles required for speech and we have to massage his mouth (inside and outside) and the area around his mouth daily, 3x a day in fact. We also have to get him to blow different instruments and suck on different straws to strengthen those muscles. As Ms Komathi informed us, since he is already 4 and is non-verbal, the muscles required for speech are weak and we have to work on those muscles to strengthen them and make him more aware of those important parts.

Apart from the exercises, we are also focusing on getting him to make different sounds and for now, we are focusing on 'aaaa', 'mmmm' and 'oooo'. Under Ms Komathi's guidance, we learnt how to help him make those sounds. His 'aaaa' and 'mmmm' are not too bad but still have to work hard on the 'oooo'. Apart from that, I also had to bring my picture this morning and he had to say 'ma'. He can say 'mmm' and 'aaa' separately but difficult for him to join the two sounds together so we really have to work on it.

I must say that I am very proud of Rayyan because he is pretty cooperative during the sessions. He will really look at us and try his best to imitate us. He really, really tries but I can see that it is just so difficult for him to make those sounds sometimes. Then he will get really frustrated and start to cry. And my heart aches every time he tries hard to get the sound out but just couldn't....

Apart from that, Rayyan also goes for full body massages at the ST centre to improve on his overall muscles. These massages are done by Ms Komathi's husband, Mr Sekar, and the first session was really traumatising not just for Rayyan but for me and Hubby as well!! At first, Rayyan was enjoying his back and leg massages, then he had to lie on his back and he started to get uncomfortable. He started to cry a bit but when Mr Sekar started to massage his neck and face, that was when he started wailing, flailing his arms and kicking his legs!!! I think it was really painful for him because Mr Sekar did inform us that the muscles in his neck and face are stiff and it will be painful when he first massage those areas. When he started wailing in pain, I just felt like crying too!!!! I kept asking myself... Why does he have to go through all this?????

But looking at the bright side, my husband and I believe that he will improve from here. We keep telling ourselves that we have to be strong and that Rayyan has to go through this because it is for his own good. Apart from that, we are also spending quite a sum every month on his ST sessions and massages (about $1400+ per month) but if he shows improvement then we think it's money well-spent, a great investment indeed.

I really, really hope he will soon say his first word. It doesn't matter what the word is as long as he starts talking...

You can do it Rayyan!!!! Jia you!!!

Visual Support (First-Then)

I have done quite a number of visual supports for Rayyan recently. One of them is 'first-then' which I use to motivate him to do difficult tasks, like going for a haircut or cooperating during speech therapy.

What I will do is first, I will show him the card before he goes through the activity and explain about 'first-then' and once he has gone through the activity, I will give him the 'finished' card for him to stick so that he is aware that he has gone through it. Then I will show the 'then' card and bring him to a place he likes or desired item.

He is getting the hang of it. The last time I used this was when he went for his speech therapy session and I felt that he was calmer (compared to the previous session where he kept crying). Will review from time to time and evaluate its effectiveness :)

Bubble Boy

Now that he can blow, Rayyan enjoys playing the bubble more and more. I think he likes the feeling of being independent and not having to rely on somebody to blow for him :))

Excellent job, Rayyan!!

The Marching Band

This is also part of the floor activities. Rayyan enjoys watching the marching band video so I got him to march and blow some musical instruments. In the video below you will see that he couldn't blow the harmonica at first but he managed to adjust the harmonica on his own... that's my clever boy!

Btw, after I took the video, I went out and bought for him toy trumpet and saxophone and he loved them!! When the Daddy got home, the three of us had a blast marching around the house with our musical instruments!!! Luckily the neighbours did not complain! lol

PS: Please pardon the Mummy's mistake in counting, 7 and 7 again! Haha...

Play

Now that I have more time to spend with Rayyan, I do more playtime or floor activities with him. I try to follow the floortime concept where I let him take the lead and I will imitate him and then try to get him to follow instructions. Sometimes I will sing to get his attention and do actions (Rayyan loves songs) or I will tell him more about the things that he is looking at that point of time.

I noticed that his play skills have improved. He can pretend to fly an airplane, roll the cars on the bed or the floor, make his animal figurines walk around the house and recently, I taught him how to move the human figurines around a castle and he can play independently with the castle now.

Mind you, this was the boy who had zero play skills. He used to take an animal and just run around the house with the animal. Same with other toys too, he will simply take a toy and run around the house, go back to the play room, get another toy and run again!!!

So, what can I say, I am simply overjoyed with this improvement! Go Rayyan!!!!

Here's Rayyan moving the elephant up and down the window grille. I just taught him prepositions/adverbs (up & down, in & out) so this was the perfect opportunity to practice!

And here's Rayyan flying an airplane... Wheeeeee!

Share

If you read the New Paper today, you will see an article about a mother who compiled a collection of true autism stories in Singapore and got them published. The book costs $18 and we have bought the book last month. I have read a few stories and I must say that it is inspiring to read these stories. You can't deny the fact that you feel better knowing that you are not alone. You will read about the dedication of the parents and caregivers of these children, you will read about how these parents accept the child's differences and how these children make them better people.

It is good to share our experiences, to let others know they are not alone, to share tips and ideas... We can indeed learn from each other.... which is why I started this blog...to share... I've had a couple of parents who wrote to me to ask questions or tell me they are inspired after reading my blog... thank you parents for taking time to write to me. I am glad that this blog is somewhat useful to some of you... And I know that there are many silent readers of my blog too.

I understand that some of us are just not keen to talk about our own children but I really wish that more parents will open up. It is really hard to find a blog that is written by a Singaporean parent, sharing about the journey of their autistic children. So far, I have found only two, one stopped writing in 2009 and the other writes only once in a while but I still managed to gain so many useful tips from her blog. I have joined a support group but I realised that most share about products or medical aspects of autism, seldom share their personal experiences.

Many parents prefer to be silent, to hide behind this invisible shield. I am not saying that this is bad. It is just that I know that there are many dedicated parents out there, parents who work tirelessly to improve their child's condition, parents who have a wealth of knowledge and ideas. I just wish that we would take a bit of time and effort to.... share, especially in terms of teaching and learning.

It will be really great if we can read about the progress made by the children, to give support to each other simply by commenting, to share ideas and tips and better still, meet regularly to bond and again, share. That is the wish that I have for all autistic families here in Singapore. To bond and help each other, all in the name of helping our children and making our voices heard....

So thank you Brenda Tan for making the effort to compile the stories and have them published. I am sure many parents will find the book useful and inspiring... I did... :)

2011

Now that the hols are here, things are not so hectic and I am able to concentrate on Rayyan. Have been doing a lot of reading and preparing visual supports. Also, every night, my Hubby and I will bring Rayyan for a walk around the neighbourhood in his stroller. We just want him to unwind before he goes to sleep and at the same time, it gives both of us the opportunity to have a good talk.

There have been changes to our plans for 2011. Initially, the plan was for me to take part-time teaching for half a year and then continue for another half a year or Hubby will quit his job and take care of him. But recently, we see a pressing need for either one of us to be with him 24/7 so that we can do all the necessary follow-ups. Especially since he has started his speech therapy sessions with a new therapist and we have to diligently do the 'homework' given by the therapist.

So after much discussion, we have decided that Hubby will be the one to take care of him. It is not easy for us to come to this decision but this is the best option we have so far. My job is more stable than his and we can't afford for him to get retrenched if I stop working. I am also still serving my bond with the government. Apart from that, Hubby can also drive so this makes it easier for him to bring Rayyan for his therapy sessions at Orchard (we don't have a car but my sis' car is readily available...thank u Sis :)) And the most important factor is, my husband is very, very patient and can manage his emotions much better than I do. I get agitated and worried easily and when things don't go my way, I can get pretty emotional :( No doubt I am much better at teaching and all but in the long run, we decided it is best that my Hubby resigns and takes care of him full time.

So yes, my Hubby has tendered his resignation and I have cancelled my part-time teaching position. Hubby will be a SAHD soon and I hope he is ready to take on this challenging position. If you are reading this Hubby, thank you so, so much. This is a really, really huge sacrifice and you are taking it on with so much positivity and enthusiasm. Don't you worry, I will always be around to help and support you. I am sure that Rayyan is very proud to have a Daddy like you. I know that I am proud to have a Hubby like you :)

So I am working hard to put the structures in place this hols so that it is easier for Hubby next year. And financially, things are definitely not going to be easy for us. We really have to tighten our belts.... No expensive holidays, no more branded bags for me (I do indulge in 2 or 3 each year to reward myself but that will have to go also), we have to cut down on eating out, especially in restaurants, etc, etc.... But now that I think of it, these are really small sacrifices..... And if things get really bad, I might even have to take on tuition assignments. I have to work really hard next year... apart from my own job, I also have to teach and guide Hubby and teach Rayyan when I get back from work.

2011 is definitely not going to be easy but if Rayyan shows improvements from all these sacrifices that we are making, then our hard work is not wasted. That is the best reward that we can hope for...

A colleague whom I really respect told me this..

Unpredictable challenges enrich and spice up our lives towards a meaningful existence. Each one of us has a mission to fulfill in this life. Yours and mine may be different but at the end of the day, it is our accountability to the mission that counts. If you can say at the end of each day, "I have done the best I can", that is enough. The rest leave it to God's will....

So yes, my Hubby and I want to be able to tell ourselves each day that.. "We have done our best."

Please guide us in this journey God.... Amin....

What's Missing??

Rayyan figuring out the missing item in a picture =)

GFCF Diet... The Review

Recently, Rayyan's speech therapist asked us if Rayyan has food allergies as there are dark rings under his eyes. I said I don't know and seriously, I don't. As far as I know, most ASD kids are somewhat 'allergic' to gluten and casein which is why the GFCF diet is recommended. Rayyan is on GFCF diet but there are not many visible changes after the diet which is why I decided to review the diet and why it is not really working...

1) He has his gluten and casein moments... When he was really sick last month, he wasn't eating at all. He refused to eat his usual food and in the end, worried sick of his health, we offered bread and he took that readily. So yes, times like these, we give in and he got his gluten/casein dose. So yes, we are not strict.

2) Still on the subject of not being strict, I have read that apart from avoiding gluten-laden and casein-laden food, we also have to avoid eggs, corn, soy and nuts (I can't remember others). We don't give Rayyan corn and soy but I do give him eggs and nuts. These are good for his health and if there are so many food to avoid, what do we give him???

3) Eating out is really difficult. We usually avoid eating out and when we do, I try to get GFCF food. I sometimes ask about the ingredients if I am not too sure. But then, they might not tell me everything that is added and outside food is usually laden with MSG and flavourings, which is also not good for him.

4) Talking about flavourings.. Rayyan loves McDonald fries and I give him that about once a week because fries is a really strong motivator/reinforcement. I can get him to do almost anything with fries. I have read a book about a mother who gives her son McDonald's fries as it is fried using vegetable oil and GFCF free. Dumb me, I didn't really try to find out what's in McDonald's fries and decided to give it to him. I just googled about McDonald's fries and found out that they actually use natural beef flavouring which contains milk and wheat!!! The very things that we are trying to avoid! No wonder there is no improvement in him.

So that means no more fries for him??? Oh noooooooooooooo!! How to motivate him to do difficult stuffs???

So is this diet good for him after all? I have been weighing this since he first started on the diet. The diet has been proven to work but we have to sacrifice so many things. For instance, I don't usually bring him to parties or gatherings because I know that the food served will be laden with gluten and casein and he will throw a tantrum if I refuse to give him the food. But we want him to be around people, to interact and socialise. But how is he going to do that if we are avoiding functions like these in the first place??

Then in school, we tell the teachers not to let him have what the other children are having as he's on a special diet. We were told by the teachers that he will check out the food that his friends are having and shows interest in the food. We don't want him to feel different, we want him to mix around yet, we are 'ostracizing' him by not letting him have what the others are having.

Also, we were told by his ST to let him try different textures and chew different kinds of food. This will be good for his facial muscles and jaws. But how to let him try different types of food when he is on this diet? He can't suck on sweets as they contain flavourings and will make him hyper anyway. He can't eat chocolates as chocolates contain milk. He hates the GFCF biscuits that we give him, etc, etc...

And then we have to wash his utensils differently for fear of contaminating the utensils with gluten or casein. And I have read that gluten can also go into the body via the skin. So Play-Doh is actually not good for him as it contains gluten. But we can teach so many skills with Play-Doh alone!! I have tried using homemade dough but he hates them! Argggghhhhh!!

Apart from all these, I have also read that gluten takes about 6 months to clear and a slight contamination will affect his system again!

So I am questioning myself again, is it worth it?? Should we continue?? I don't mind the money spent (yes, GFCF diet is expensive!!) and the hard work we have to put in but more importantly, is it really, really beneficial for him in the long run?

I really, really don't know.......

Mr Potato

Teaching Rayyan to fix parts of a face by using Mr Potato :)