Tuesday, March 31, 2009

The First Perfect "One"

The days of March have quickly passed right through the gaps of our fingers just like granules of sand. Much has happened in this month: a visit from the developmental specialist, an appointment date with a developmental paediatrician, an appointment with the audiologist, a visit from my friend TM for some speech and language help, a visit from Infant Development Services, the debut of this blog, the start of Little R's language redevelopment, a visit from a speech-language pathologist at Little R's school and our first parent-teacher interview. What a full month.

Here's the latest on Little R's progress. Little R now knows to say something before he gets what he wants. He says and demonstrates that he knows the following words: "gookie" (cookie or biscuit), "fafaun" (rice in his baby Chinese), "goo" ("juice"), "up", "popoe" (pick me up in his baby Chinese), "nienies" (milk in his baby Chinese), "naughk" (milk), "guyguys" (go out somewhere in Chinese), "hot", "natnat" (hot in Baby Chinese), "bubbles", "ball", "boon (balloon)", "igs" (eggs), "dadan" (eggs in baby Chinese) and "Dada". These are words that he used in the past without much effort, but we're glad that he's reconnected with them.

This evening after supper, DH was giving cookies to the kids for dessert, and Little R knew right away, and he didn't need us to model the word, to say "cookie". So, DH decided to switch it up a bit to add some more vocabulary: "biscuit". Too difficult. The final product sounded something like "mins" which I said that we should accept because it did have the bilabial position as well as the "i" and "s" sounds. Then DH decided to have Little R say "one." Now, Little had never said "one"... at least not that I recall. He used to say "uno", but the also dropped out of his lexicon. Anyway, Little R responded with: "two" :) and "please". However, DH kept modelling "one" -- and to our utmost surprise and delight Little R called out "ONE" perfectly! We cheered and clapped as Little R shoved the cookie (his reward) into his mouth as Little S watched the celebration from her highchair. It was a great "one"!

Thursday, March 26, 2009

First Nursery School Day Since Meeting with Speech-Language Pathologist

It was a beautifully mild day today. DH had to leave for work early, so I had to bring Little S along to drop off Little R at nursery school.

It was a nice walk to the YMCA, and getting Little R ready to go into the classroom was a breeze since I didn't have to bend down (while wearing the baby with a sling) to change his boots to his shoes. However, Little R thought that I was staying so Angela, his teacher, had to do a little prying him away from me. He was okay, though. There was no crying. He even kissed his sister bye-bye.

The walk home was very soothing. I had not heard the symphony of birds in our neighbour until now. Every chirp, squawk and whistle had its place in the band of birds. How lovely it was.

Again going to pick up Little R was very nice. The birds were signalling the beginning of Spring.

I was one of the last parents to pick up her child. When I peaked into the classroom, Little R saw me and ran out to the hallway. His teacher Karen ran after him, but was relieved to see that he was safe and sound with me. She turned and bent down to his level: "Little R, you have to wait until we call you." I hoped that this would be the only time Little R escapes from the classroom. Usually the gate is locked, but when people open it from the outside there is a short window of time for a child to take off.

After dressing Little R, I asked him where his bag was. Usually no one touches his bag because he does not need his pull up changed. Angela came out to talk to me. She said that Little R had taken a visiting mom by the hand and led her to the washroom. He had to use the toilet. Angela realised this and put him on the mini throne. Unfortunately, he peed all over his pull up and his socks because his penis wasn't pointed into the toilet bowl. Well, Angela said that she now knew for the future to point his penis downward.

During his toilet incident, Angela was able to get Little R to say three words: "socks", "on" and "pants". And he also said "hi" inside the classroom when greeted. This is pretty good seeing that he had not spoken a single word until last Tuesday since beginning nursery school in January. I know it might not seem like a lot for most three year olds, but he's unique, and we're very happy about his progress no matter how little it seems.

The Ideal Caregiver for Little S

As I've mentioned in a previous posting, we're looking for a child care provider for Little S so that Little R can have some needed one-on-one time with me.

We are looking for a person who:
-lives close by (preferably in walking distance to our home)
-speaks a language other than English (just so that Little S would have exposure to a second language like now)
-has green habits (for example, she would have no problems doing EC or using cloth diapers)
-has a smoke, drug, violence and pet free home
-is in good health
-is a positive, fun and cheerful person
-successful at multi-tasking
-is patient
-provides healthful food
-provides age appropriate stimulation for children to learn and grow
-handles stress well
-is reliable and honest
-is passionate about children

This is really difficult. I won't just hand over my child to someone I don't know. I would have to visit and interview the right person probably several times before leaving Little S with her.

Wednesday, March 25, 2009

Speech pathologist and first ever parent-teacher interview for Little R

Finally, March 24th was here. A speech language pathologist was going to see Little R at his nursery school today to assess his communication development. DH and I had been looking forward to this ever since the day this appointment was booked.

DH and I walked to the nursery school today. We left Little S in the care of Sister D at home. Was Little R ever surprised to see us both there waiting for him. The little guy didn't know what to do. He kept looking at us in bewilderment. We ushered him to go back into the classroom.

There, we met the Durham Preschool Outreach program co-ordinator and the speeh-language pathologist. They greeted us cheerfully and professionally before we sat down in the boardroom to discuss Little R's assessment. Little ran around and played in the classroom, and would run in periodically to check in on us.

The pathologist said that she observed Little for about 15 minutes before interacting with him and playing with him. She observed that he loved playing trains, but he didn't play with other children. She noticed that he made many vowel noises. We remarked that we also hearing him making mainly those sounds at home. His teacher, who was also in the meeting, also said that he did that in school. The pathologist went on to describe Little R's communication skills to be delayed in all areas including pre-language. This meant that he had poor eye contact and did not use gestures. She (the pathologist, Michelle) tried some formal testing with him where she would show him a picture of something and he would have to name it. But he was not able to do that.

Michelle tried prompting him to say words by using things of interest to little children like bubbles and a gear that he could turn. She said that in a half hour she was able to help him say ten words. The technique sounded very similar to the one that we're using right now where we should him the object that he wants, withold it from him until he says the word. She will have a full report for us in about a month's time. In summary, we are to use very simple verbal language with him. Little R is capable of using single words. Once he has at least 50 words (attached to the correct meanings) he will probably be reading to string together two words. Michelle reccommended that I speak uniquely "Chinese" while DH speak to him in English only. She said that consistency was vital to success. I believe this.

The parent-teacher interview was informative. Angela spoke about Little R's development. She said that he was developing skills in most areas; however, his pre-writing skills were already developed. She said that during snack time Little R would stuff his mouth full of food, so they will be keeping close eye on him so that he doesn't choke. It's a sensory issue, I think. We'll get it sort it out somehow. Angela also remarked that Little R always never wetted his pull-up diaper. We decided that the staff should put him on the toilet when they see that he's dry. (Little R has been very good with holding it in for the toilet -- but I'd better now jinx it by talking too much about it -- my grandmother would blame me!).

We left there with much comfort to know that the staff at the YMCA were so caring about our child. It's a very worthwhile place to invest in because everyone is included.

Monday, March 23, 2009

The first steps

Little S has become a wild ball of fire. She dazzles us with her blazing smiles, the funniest faces, her tiny finger pokes in the eyes, nostrils and mouth, and her unstopable intonated chatty voice. (Oh, she's crying loudly now in the middle of her sleep - ah, DH will get her.) She still wakes me up at least twice a night. She expects me to hold and feed her back to sleep, but no more! I must take back my slumber. Yes, she will cry, but she will still wake up happy in the morning with the sun peaking between her opaque royal blue curtains. She babbles in her crib, rolls around, plays with the hippo, elephant and cat until someone comes to greet her. Her excitement in seeing you is priceless. We cherish these days very much.

She's now fourteen months but still not walking around yet. However, on the weekend when my sister D was here, Little S took her first steps toward herself. Yes, that's right: Little S took three steps to her own reflection in her brother's toddler height mirror! She was thoroughly excited by her success. She has continued to take two or three steps here and there (but mostly in front of the mirror), but has also been standing for much longer periods. Her standard mode of transportation is crawling or the "mommy bus". She stands on the toddler picnic table while playing (and drooling) with playdough sometimes for fifteen minutes or so. She also enjoys watching the outside world through our low bay windows at the front of our house. More recently she has expressed great interest in cooking like her brother. In the photos, Little R was making a vanilla cake, and when he went to bed, Little S took over to make the chocolate cake. It was her first time standing on a kitchen chair at the table to prepare food. How fascinated she was.

As the children develop more skills, there are so many more things that we can do together. After watching an episode of Chef at Home with Michael Smith, I got Little R to play basketball. He actually played and was excited. I hope that he will be just as excited when I teach him how to clean and organise. When teaching him to pick his toys, Little S eagerly crawls over and starts putting the pieces away. But, they are still creating more mess than they're cleaning up... at least for now.

Thursday, March 19, 2009

Good days, bad days

Today has been a good day. Yesterday was a bad day.

From the moment I grudgingly got up yesterday, I could feel my body and spirit very heavy. I had the sensation of unease and discomfort in the pit of my stomach and gut from the night before watching autism stories on Dr. Phil. It was difficult to breathe deeply. There seemed to be blockage of positive thought and energy.

Negative thoughts circulated around me throughout the very challenging day. I wanted to screamed, but bottled it tight in fear of frightening the children. But Little S did feel the unease of Mommy. Children are like sponges for emotion; they're also mirrors that reflect what emotion is around. So she cried and whined a lot of the day. Little R kept running around loudly babbling incoherently. Little S was always at my feet whining and crying.

Though laden with dark clouds, I continued with holding things that Little R wanted, waiting for him to say the word before I gave them to him. He did catch on very well to the game, but now it seemed like he was just shooting off words until the desired item was in his mouth. For example, I held up a piece of dark chocolate (something that I don't normally give him) and he started with "cookie" then "cake" then "hot" then "natnat" (hot in baby Chinese), "nut"... Although I did keep modelling "chocolate" every time he got it incorrectly. Finally, I tried "coco" a few times, and he finally got it. Another time I held up a raisin and he said and signed "more" right away. I did give it to him because it seemed to make a bit of sense, but the next time I tried to get him to say the corresponding word for the item.

It was a frustrating day for Little R, and he he showed it by biting my shoulder. It's quite nicely bruised and purple today. Yesterday the pain would not subside. He was frustrated because I couldn't understand what he wanted from me. He was on the toilet reading his French picture dictionary turned to the trains. He kept using my finger to point at a passenger car. I tried saying many things, but he kept pointing with my finger harder and harder, and he yelled loudly, cried, squeezed my hands and arms then bit me hard.

This behaviour is new. I don't like him expressing his frustration this way. I think I will get him a squeeze ball. Are there any good suggestions out there for redirecting a preschooler's frustration? I hope that he will learn enough language soon so that he can express with words, but until then he has to cope somehow.

I spent a day confined to my disruptive thoughts: you're incapable of taking care of your two children while others can; you're disorganised and you don't have meals prepared; the kitchen is a mess. I needed to hear from someone that I was competent, and that my situation would frazzle any mother. I wanted to hear that I was a good mother, and that I was doing what I could for the good of my children.

Finally, I spoke with my long time friend EM. She told me not to care about what others thought, though she admitted it was easier said than done. She told me that she also needed help with her two children who are only 15 months apart. It made me feel better to know that I wasn't inadequate but just overwhelmed. I just needed to breathe deeply to inflate my spirit again. I couldn't remember ever trying so hard to breathe deeply without success. The blockage was strong, but I did success in taking it down.

DH was actively looking for a home daycare giver for Little S. Because Little R needs all the intervention possible for every waking hour, I need to provide it for him. At the same time, Little S is at an age where she also needs much individual attention. Although I do not like the idea of having a stranger take care of my baby, I think that we will have to scout out someone and put our trust in her. Ideally, I would prefer someone from my family to take care of her, but if not, we'll have hire the right person.

Today was a good day. I woke up positive, and my good friend TM came over to give us some pointers on helping Little R to communicate. It was positive and hopeful. Little R did very well. TM told me to not think about the past, about how much Little R could do before when I told her that it was sad to think how much work we have to do in order to get him back to where he was over a year ago. Little R has an inventory of words in his brain that he kind of randomly calls upon because it seems that the connections that were once there were somehow all disconnected. TM was that autism was neurological; things that were once in order are now in disorder. This just means that we have to start from the basics and build up. We have to teach in a different way. In the beginning it's very challenging because there's less to work with. It will get better.

There will be good days and bad days... I hope there will be more good than bad. I believe there will be.

Monday, March 16, 2009

Up, up, up!

DH decided to start a jogging routine with Little R since reading that jogging for 20 minutes could help control about 67% of symptoms (we're hoping to reduce the babbling and licking of the windows). So they went out for a 20 minute jog this morning and again another 20 minutes before supper. I think that this routine will also help them sleep better; Little R seems to sleep very well at night, but sometimes it takes him about an hour of babbling in bed before he falls asleep, so let's hope that the jogging help him to sleep soon after he is tucked in.

Little R seems to be catching on well to our "game" of request-and-get. He seems to have mastered "up". He says it sometimes without me modelling it. However, it's a little tough having to pick him up, carry him (he is 45 pounds) while pushing Little S in the stroller. But what can I do? I want encourage him to speak. I've also noticed that he wants a cookie or something else, he says "up". I can kind of see how words are in him, but they're not called on accurately for the appropriate things yet. I also heard him reading with DH before going to bed. Most of the words were very mispronounced, but he was practising. DH mentioned that Little R seemed to have the sounds of the words memorised (in his speaking days his pronunciation and comprehension of the words in the picture books were much better than now) because in one instance, Little R read "King" and then "lamp" while the picture of lamp came before king.

While trying to find a book today on autism and diet (I think the title of the book is something like Special Diet for Special Kids 2, Little R kept running away, trying to go down the stairs, babbling, pushing the water fountain lever and opening the washroom doors. People, including the librarians at the desk, were beginning to look at me with less patience. Well, what could I do? Normally I would have left, but I was sure that I had seen the book before, and I really wanted to get started on the diet for Little R's sake. The unfriendly-looking librarian couldn't find the title on the computer and didn't offer to look on the shelves for me, so I thanked her and left. I hope to be able to find information now how to control Little R a bit more out in public.

Little S has been absorbing what we're doing with Little R like a sponge. Today I was going to give her some smoothie but before I gave it to her she said "goo" (this is what Little R says for "juice"). I gave her a sip. She swallowed. "Goo." I gave her another sip. Again, she said "goo" and drank. It was quite cute.

Sunday, March 15, 2009

Denial from grandparents

Today we went to my parents' house to celebrate my sisters' birthdays. Along with the cakes I also had to bring along some literature about autism so to warn my parents about such a diagnosis for their grandson in a month or so.

My mother was too busy to read it; or perhaps she already knew what I would put in her face so she did not want to read it. I had already heard some worry in her voice when I told her that Little R was still twirling, laughing to himself out loud, etc. She told me that she truly believed he was 100% normal.

My dad, being the bookworm that he is, did take the Internet printout. Halfway reading it, it exclaimed in a calm voice that it (the literature) had nothing to do with Little R. Well, seeing that he said that without me mentioning Little R, I knew that he knew what I was inferring. He did continue to read it.

I asked my mother again to read the literature, but she said she didn't have to. She said that we just needed to teach Little R with a bit more care. Ah, she needed time to consider that there might be something else going on with him, and that he needs more than just "care." I tried to explain that we needed to learn as much as we could about the disorder so that we could help him. He does not learn the same way as others do naturally.

Later, my mom's cousin came by to visit. She tried talking to Little R in English thinking that he just didn't talk in her language, but Little R did not respond as usual. I had her read an article in Chinese about autism. She then understood what I was trying to tell her, why Little R did not act like the typical 3 year old. She told me that many cases of ASD were turning up in Hong Kong, and that there have been much about it on the news. That's good; awareness is spreading.

Since the developmental specialist's visit 9 days ago, we've started using a method to get Little R to speak. Before he gets what he wants, he has to say the word first. For example, if he wants juice, we hold the juice up high, model the word "juice" and wait for him to say it back before giving it to him. Now sometimes it's harder than other times. Sometimes he will scream, grab, hit (a table for example), cry for several minutes before saying something. In this example, when he says "goo" for juice, we accept his effort in speaking and quickly give him the juice as his reward. So far, we've been able to get him to say "up", "more" (sounds like 'ma'), "egg" (sounds like 'ig'), "juice" (sometimes 'jus' sometimes 'goo'), "apple" ('a-foe'), "milk" (it sounds like "naughk", but he's trying - he also says 'nainai' in Chinese), "cookie", "cake", and DH told me that he made an effort to say "bath" before he was awarded with a nice bath. Now, saying a sound after we make it is one thing, putting meaning to the sound is another. And then using it spontaneously is another. One step at a time.

Saturday, March 14, 2009

Is Little R on the Spectrum?

Since around the time of Little S's birth, Little R has shown regression. There was regression in toilet training, but most alarming was a regression in language and verbal communication. The toilet training has been going well again for the last 5 months or so, but the language has worsened.

I googled "language regression" and "toddler" about a year ago and the only results all contained "autism" in the title. I looked into several of these results and my heart kept sinking. I talked to some people about this, but most people did not seem concerned. Somehow I thought, that it was like winning the lottery (Little R was always very healthy, and we have no confirmed history of autism in the family that we knew of) so I just let it sit in the back of my head, hoping that he would out grow his language regression.

So many people (friends, childcare workers, family) we (DH and I) spoke to about his language regression assured us that he was fine because he started to lose his language around the same time as his sister's birth. As well, we had just moved to a new house and new city a few months before that. We also switched him out of his crib for a big boy bed. In any case, I was concerned, and a worker at the YMCA Early Years Centre gave me a flyer to a Get Ready Set Grow day at the YWCA. There, I had Little R screened at the Speech and Language booth. He did not pass at all. He was referred to the Speech and Language Programme at Grandview Children's Centre... the waiting list was about a year! We just hoped that in a year's time he would have no need for the therapy.

Why has it taken this long for us to figure it out? Being our first child, I thought that his behaviours were normal. He met all his milestones, he spoke in two different languages and signed before he was two. He also did very well for toilet training starting at 17 months to 20 months. Now that I've read more about autism in children I can clearly see the signs: language regression, eye aversion, does not respond to his name, perfect hearing (we have this on paper from the audiogolist), spins (even to the point of falling down, and still continues), babbles, kicks (fidgety body), laughs to himself, cries out in sadness without apparent reason, takes people by the hand to get what he wants, and other things.

Although we do not have an official diagnosis (what a long time to wait!), we highly suspect that Little falls into the autistic spectrum of disorders (ASD). From what I have read, his symptoms seem to be that of classic autism. Please read more about what ASD is in links that I have posted as they can explain much better than I can.

We've already been upset, in denial, blamed ourselves, gotten angry... we're now in the mode to help Little R as much as we can. We no longer blame ourselves (we let him be vaccinated, let him watch some TV and gave him cow's milk to drink because of persistent GP recommendations) because it's futile and because we never intended for him to suffer from this disorder! However, we are very weary now of vaccines; Little S will not be getting her next set of shots (the MMR one; the one suspected to cause autism).

I'm setting up this blog to update you on what's going on, what interventions we're using, what progress we're making, and our struggles. If you have any information that may help Little R, please post it. I'm especially interested to find someone who was directly affected by autism and then "cured" it. I know that officially, it's said that autism has no cure, but that does not mean there isn't one. I'm grateful to all the wonderful people who still care about Little R, and who have offered their help.

We're fine. We know that there is hope, and we're hard workers so we'll make progress. Please do understand that I will not be able to chat on the phone as much as before simply because I must keep Little R engaged as much as possible. I also cannot neglect the baby. I do want to remain in touch; thus this blog. Feel free to email me as well. I may not be so quick, but it seems easier for me to do email at a convenient time than to rush to the phone when changing one baby and the other has gone off to lick the window. Thank you for understanding.