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October 8
Luke's dad and I both read Jenny McCarthy's new book Louder Than Words and are beginning a journey of how we can best help Luke and hopefully bring him out of his autistic world. Because we had early intervention with his physical therapy and speech therapy, Luke has been taught to have eye-contact with us if he wanted anything. He will now almost always look at us, or has to look at us before we respond with an answer to his "grunt" question. He has recently become an amazing eater which has made it quite painless to take Jenny's recommendation of starting our him on a gluten-free/casein-free diet (wheat and dairy). We began September 25 and it has been almost two weeks of gluten-free foods (twice as costly as regular groceries!) and we have already seen a decrease in seizures and an increase in vocalization. This is quite exciting that something as basic as food can make such an incredible difference. The casein-free diet began October 5 so we have no reports yet on his reaction. Autism has been discussed as being highly integrated with stomach issues which are obvious to most parents of autistic children, however Luke has always been a great eater, and a "regular" guy. This may be due to the fact that for the past 2+ years we have given his anti-seizure medication mixed with prunes... therefore there have been no warning signs regarding irregularity or difficulties with food intake/output. Hopefully this new diet will help Luke and heal any possible gut-related issues.
Since the diagnosis, our first step is to fill in a form requesting funding from the BC provincial government. Apparently there is a "window" from 2-6 years old where the most improvement and biggest changes can occur. The money can only be used for specific services listed/accredited by the BC government.
Another lead we are following is the Son-Rise program that is based in Sheffield, Massachusetts. Luke's dad will be attending a one-week intensive conference from December 2-7 to learn more about this program, what is necessary, and how to implement it when he returns home. We will need to solicit help from volunteers and hopefully local university social work students to work one-on-one with Luke. We are so far impressed with this program as the originators had a son with autism themselves (extremely autistic: spinning, rocking and no eye contact for hours)... that they brought completely out of his autistic world and has since become a professor with an IQ of 150. They created their program from a love-based, intense, respectful, unconditional, non-judgmental position. It is important to see the child as a beautiful, fascinating person upon whom no expectations, conditions or judgments are placed. This is how Luke's dad and I feel... unfortunately, there is little chance that this program will be covered by the local funding... so some financial strains are in our future, however we will do our best to research all the options.
Just personally, it is interesting that locally there are not a lot of people who know much about autism, let-alone the Son-Rise program, so this will mean a lot of work/research done by us. We have a local advocate that we still need to contact, as well as we're hoping to have Luke examined by a DAN! (Defeat Autism Now!) doctor who takes a look at the child from a large spectrum of treatments from diet to supplements to allergies to immune issues. From my basic research (and I have a lot more to do!) there is a DAN! doctor in Calgary, so I hope to have a referral to him from either our neurologist or our local pediatrician.
Another trail to follow is a program called RDI which I know absolutely nothing about (don't even know what it stands for), but have discovered there's an RDI-certified people in Salmon Arm and Kelowna... so I will follow up with them.
The most frustrating part of this whole process is the fact that everyone says "early intervention" is KEY to helping these children, however once Luke was assessed he was put on a ONE-YEAR waiting list for the Early Intensive Behaviour Intervention therapy. This is why we have chosen to look into the Son-Rise program and possibly the RDI program... because it is too difficult to just sit and wait.
One other thing I have looked into is hiring a music therapist for Luke. A lot of autistic children really enjoy music! Fortunately there is a woman in Kamloops with an available time-slot, so we are hoping to have him see her once a week as soon as possible; and are also looking into whether or not this is funded.
October 15
We met with the intake counselor at CLBC (Community Living BC) and began a form for the funding. Finally decided today to manage the account ourselves which is much more work, but we'll see how it goes (we can always change to have the money go directly to the services we choose). Luke's dad has an appointment November 2 to finalize the funding form, and get the process going.
We also had a visit from our new Occupational Therapist, Ms. S, and she gave us a "Sensory Profile Questionnaire" to fill out. Basically she noticed, and we discussed, that Luke has some sensory issues: for one he does not like when his hands are dirty. He will go to the trouble of picking up my hand, bringing it to a piece of food, then moving my hand to his mouth rather than grabbing a piece of food for himself. We don't even have to move our hand at all - he moves it for us. You'd think he could master a spoon or fork then, but he's very sensitive to "spilling", and so does not have the confidence to feed himself without dropping the spoon and/or food (quite upsetting - trust me, we've tried it). She showed us that he does not like weird textures (would not touch a tissue paper cheerleader pompom - and was upset when she put his hotwheels car in the centre for him to dig out.). It was very interesting to see this as we of course knew he had some sense sensitivities. He eventually warmed up to the pompom and touched it. Ms. S. will be back October 18 to watch Luke eat his lunch and see if we can help him with his eating habits. He eats well, and eats everything (truly amazing), but we'd like him to feed himself more often, and eventually use a spoon/fork.
We've continued Luke on the GFCF diet and have seen some improvements in Luke as far as more eye contact and more vocalization. He's still not talking, but he's got a lot of noises! He's very relaxed and will sit with almost anyone, and take people's index or pinky fingers and drag them where he wants them to go, or towards an object he wants. My friend, C., babysat him Saturday night and could not believe the changes in him in the past 3 weeks. He looked at her, engaged her in whistling/blowing his hair, sat with her and gave her great eye contact. She had a lot of fun with him for the first time ever.
Mom and I experimented with GFCF recipes and made a great loaf of bread in the bread machine. We bought a lot of ingredients (she bought most of them) and ayiyiyiyiyi they're expensive, but worth it of course. I went shopping to Save-On and found more options as far as Gluten-Free products (hamburger buns, English muffins, waffles, cereal, breakfast bars), and we have a couple local organic/natural store that supplies some variation. I actually really enjoy this new food-creating project and find the foods delicious. Even Rice-Dream isn't so bad. I have always been a lover of food, particularly my bread, butter, and cheeses, but some of the alternative options are really quite good. I am dedicated to making sure Luke loves food as well and will try anything new. There are a gazillion websites and books with GFCF ideas which I continue to research when I have time. An interesting thing is that since we never put Luke on a bottle, he never had much "milk". In retrospect this was a good thing for him, since the casein in milk would be detrimental to his brain. Gluten and casein in an autistic child act as an opiate-type drug and dull their senses. This is why they "space-out" and don't always hear you when you call, because they are actually "stoned". Seriously. This also explains why Luke does not feel much pain and also craves these foods (okay, he's too laid-back to "demand" certain foods, but he is crazy-addicted to cheese to the point that we cannot let him see it or he'll cry for it). Some children when put on the GFCF diet actually go through "withdrawal" and can be quite difficult for a short time. One small note that may seem trivial to most, but was HUGE for Luke's dad and I is that Luke said "Aaaa-th" this weekend at my parents. I told everyone I was going to take a bath, and Luke followed me and said "Aaaa-th"... he used to say this quite often, but we haven't heard this "word" or much of anything for the past 6 months so this was a really big deal to us. We'd like to think it's the GFCF diet working!!!
I called the Calgary DAN! (Defeat Autism Now!) doctor, Dr. H., and received a return call a day later. The nurse took my email address and sent me two documents of information regarding their protocol, process and fees. DAN! doctors do complete work-ups of each individual to find out what specifically upsets the child's system. There are a number of different vitamins, essential fatty acids, nutrients, amino acids, etc that can be tested and supplemented. They also test for allergies. Also, most children with autism have ineffective immune systems, as well as major digestive issues. The tests happen over a year and are exorbitantly expensive, and because it is a private clinic and outside our province, it is not covered by BC funding. We have decided to first pursue naturopathy in Abbotsford or Vancouver (have two leads) and will see what they can provide. We are also torn with informing our neurologist about the alternative therapies, but we have not yet discussed Luke's autism with her, so we'll see what she says. Luke's next EEG is scheduled for November 6 at 10:30am so we'll know more after that day.
I see our local pediatrician tomorrow, Dr. C., and will inform her of all our latest developments. She will be amazed that Luke has received a diagnosis already since she warned of a 6-month wait. We fortunately got in on a cancellation so the process is quicker (or has God taken a special interest in this little boy - of course!!!).
I spoke to a representative at KIDS (Kamloops Infant Development Society) who gave me the name of a woman in Kelowna that comes to Kamloops and sets up programs for recently-diagnosed children. She, Ms. S., and her partner will be coming here Thursday October 18 at 5pm to discuss their program for Luke. The funding will pay for her services. She is considered the "behavioural consultant" (the Kelowna chapter of the Early Intensive Behavioural Intervention) who sets up a plan including our OT (Occupational Therapist), ST (Speech Therapist), and PT (Physical Therapist). This is exactly like the Early Intervention Plan here in Kamloops, but since the local caseload is full, this women comes here from Kelowna, so we don't have to wait a year for help.
I also received a return phone call from our local advocate, Ms. B., and am thrilled by the information she provided. She heads up a support group of parents and they have their next meeting on Wednesday October 24 which we will attend. She also gave her thumbs-up on the behavioural consultant (and highly recommended the RDI program which is incorporated into this behavioural consultant's methods), as well as the music therapist, which was reassuring. She mentioned quite a few treatments and acknowledged that as parents we know our children best and are the best advocates for them. She tried "phytobears" (gummy bears loaded with nutrients). She will put me in contact with a local lady who sells them. She also recommended a naturopath doctor in Vancouver who has an autistic child so she "gets it". Ms. B.'s son is now 14 and "mainstreamed" (in regular classes without assistance), so there is much hope. She also suggested preschool and a specific one on the north shore because it has an "observation room" so we can watch Luke interact with other children. We have yet to decide on a preschool as we're still collecting information about all the programs and options. I also want to do some more research on the RDI program as I understand it's very parent-involved which is what I'm keen on with Luke. This local advocate will be sending me emails with updates on everything, so I'm grateful that we finally connected. She'll will come by Friday at noon to chat some more and bring some books.
Luke's dad is still registered at the Son-Rise program for Dec. 2-7, but we have a couple weeks to cancel with a minimal deposit deduction; it is quite expensive and I don't believe it will be financially covered. Part of us wants to go just to learn more - the more knowledge the better, but we're also waiting to see what all the services locally can offer so we can feel okay about cancelling.
Left a message for the music therapist that we will take her Wednesday time slot (5:15-5:45) for Luke. She is also offering a Saturday morning class for up to 6 children, but Luke's dad and I feel at this point that Luke needs some one-on-one attention. Luke has shown an enjoyment of music (nothing unusual), and enjoys "plunking" keys on the Casio keyboard... so we'll see how it goes and if it helps. The local university has a professor that researched how music is a very effective tool for helping children talk, so we'll keep our fingers crossed.
I'm interested in a nutrient product called DMG and actually bought some capsules the other day in the nature store. Apparently it can work wonders for about 50% of autistic children, and in less than a week major changes can be noted, specifically in speech... non-verbal children have spoken within a week of taking DMG. If it works it will work quickly, if not, apparently no harm done. Our hesitation is of course because of the fact that he's currently on medication and we're nervous about introducing anything. I'm sure the neurologist would not approve. Most research says it's harmless, but it's also not been thoroughly, clinically tested. We're going to think on this one. This product is also supposed to help the damaged immune system, and oxygenate the brain. Speaking of immune systems, we were at my sister's house for a while on Sunday and Luke was constantly rubbing his nose. Our instinct tells us he's probably allergic to cats... and we recalled he was rubbing his nose at our vacation hideaway (in the lodge) where there are many cats living. It is not unusual for autistic children to develop many allergies and/or asthma.
The other highly significant and effective supplements are Vitamin B6, Magnesium and Vitamin B12. For all of us sceptics out there, you can imagine our hesitancy in giving Luke all these things, as he is also on pharmaceutical medications. We have decided to consult with a naturopath who specializes in autistic children before we administer anything. We assume they have a "plan" that we can follow. From the previous naturopath appointments, I know that for some people certain "manufacturer's" name-brands are more or less effective than others depending on the individual person. I've been to naturopaths that actually put the medication (in a bottle) in your hand and then "test" or "tap" or "get you to try to resist their pressure" to see if it will work for you or not. I have no idea how they know... it all seems like a bit of quackery to me, but hey, my kid needs help and we're willing to try anything.
Luke's dad is working full-time right now, so when he comes home I put aside a few articles for him to read. After reading the numerous vitamins, minerals, supplements, etc. that may be helpful for Luke, he says (with his scientific mind), "Why don't they provide everything in one pill - the autism pill?" You heard it hear first :).
I've started a filing system of all my research. Each therapy or program gets it's own file and I keep track of all the information by date, and document each phone conversation and each new step we take. The stack is pretty high already!
October 16
Had the appointment with our local pediatrician and just updated her on Luke. It was nice to have her respect our decision to discontinue Joel's vaccinations. She was honest and admitted that she would not know what she would do if it were her children. We really like her as our pediatrician - she has also been supportive; and she was there when Joel was born, checking him out right out of the womb. We keep her in the loop on all medications/treatments for Luke. She also understood that we will be pursuing naturopathic/homeopathic therapies. And she is interested in this web-blog, to follow our journey and perhaps we can be of help together for her other clients with autistic children. I did mention the GFCF diet, and she said she had already noticed that Luke looked at her a few times, trying to make sure she was watching him play and succeed with a "pop-up" toy. He had never done that before. She also said his comprehension was never in question (meaning one can tell he "understands" just fine)... nice to hear :).
The naturopath in Abbotsford called and we made an appointment with Dr. R. for January!!!!! 14th (Monday) at 8:30am. This is the earliest booking, however she put us on the cancellation list. We'll keep our fingers crossed. She did confirm that this doctor is very familiar with autistic patients.
I also called another naturopath in Vancouver, and did not get a hold of them until later in the day. Dr. A. actually had an opening for the day I requested: Monday November 5 at 10am. I wanted this day because a) we're in Vancouver for Luke's EEG on Tuesday November 6, and b) I was hoping to have it before meeting with the neurologist (after the EEG) so we can discuss the alternative therapies with her. We may cancel with the Abbotsford naturopath if we're happy with this one.
Our CLBC contact, Mr. D., has been great as far as trying to get us the information about our funding questions (what can we spend it on, etc.) and he has requested a list of our questions that he will forward to Victoria. I forwarded a list of 6 questions to start:).
I created an autism mileage log to keep track of our trips, etc.
Just got word from Ms. E, the music therapist. Luke begins his first session tomorrow from 5:15-5:45.
October 17
Okay. The music therapist is AWESOME. Luke "explored" the room as she tried to show him different instruments (and she sings fun songs to attract him). He only wanted to "step on" the drum, as his new thing is standing/climbing on top of things. She went to the piano, no interest; the xylophone, he was only interested in the sticks; the sandpaper blocks, didn't like the feel of the them; the ocean drum (totally cool - I have to get one of these... it has thousands of ball-bearings inside and sounds like the ocean when you move it!), not interested; and then she brought out the guitar.... and he loved it. Giggled and strummed and wanted her to play (pulled her hand to the strings). I deduced that it may be because of Raffi... Luke's favourite CD that we play over and over. Ms. E. was very happy to teach a boy so young, and was impressed with Luke's eye-contact, his shyness (wanted to sit with mom alot), and his exploration (would break from mom to look around the room). We are going to meet once a week, and she will work on social skills, turn-taking and anything else that our behaviouralist recommends. It felt very right, and she totally reminded me (looked like her too!) of my beautiful niece Caitlin who is on her last year studying for her music therapy degree in Ontario. Joel came along for the ride, and believe-it-or-not, actually "sang" along with the music - haha. He's going to be VERY vocal that one.
October 18
Big day today. First off I made another loaf of GFCF bread in the bread-maker and it turned out okay. It's quite dense/thick and half the size of a regular loaf, but Luke eats it. I thought I'd try some banana muffins and was very skeptical as it's made from all kinds of weird "flour" - brown rice flour, garbanzo bean flour, tapioca and potato starch. Anyways, turns out they are the best banana muffins EVER. I had 3 for lunch. AND they didn't need butter. Anyone who knows me knows EVERY muffin needs loads of butter... but these ones didn't. I am in as much shock as you are....
At 2:30 the OT came by, and I had to wake Luke from his nap. He was absolutely charming as usual, and showed Ms. S. exactly who rules whom at the kitchen table. Luke will not touch a utensil (unless to play with it if there's no food on it). Luke will not touch food, unless I "drop" it accidentally on the table or floor (for whatever reasons he seems obliged to "clean" up my messes). It was fascinating to watch how physically strong and strong-willed this little guy is. You could have the food/fork way up high and shake/move it everywhere, and he'll grab your hand and strongly guide it into his mouth. We are merely his instruments to use at his leisure. The irony of this is that he eats well. He eats EVERYTHING. And he usually sits pretty well at the table too. So we're going to continue to work on his eating habits and see if he can help himself more, but only attempt to "fight" him at one snack time (away from the table), as no one in their right mind wants any meal to be a big hassle...
At 5:00pm Ms. S. and Ms. K. showed up. Our new behaviourial consultants and they will over the next few weeks hang out with Luke, get to know him, then hire a couple of women to implement the ABA-based program they've developed which integrates play therapy, cognitive learning, social skills, self-helping, etc. We just said to "go-ahead" as this is the only service available right now, and they're actually coming from Kelowna to help us out. There are 3 other families in Kamloops to make the commute worthwhile for them. We are actually quite fortunate as they only have room for 2 more children, and now Luke is one of them! Yay! The funding from the government just covers their charges, with a little extra to cover the costs of the music therapist. So it's all good. After a month of "prep" two women will work with Luke (we get to "interview" the women to see who we like best); they will come in 3 hours a day, 5 days a week. Apparently with other families in the area they've seen a lot of progress just within the first two weeks. We're both very excited about this. It feels like some things are starting to happen for Luke. I think Ms. S. and Ms. K. were both impressed by Luke as he does not really fit the stereotypical autistic child... he looked at both of them, touched them both, shook hands; they know he eats well, sleeps well, laughs a lot and we told them he's really quite gentle and sweet - minimal "stims" (flapping or rocking) and emotionally sensitive. When they left I jokingly told them not to fight over who gets him on their caseload (one or the other will manage Luke's program)... they laughed and said they'd argue in the car. The two great things about this program is a) all the therapists meet every two weeks (OT, ST, PT, and MT) and talk about Luke's progress and where we need to focus, or what we need to change and b) they teach Luke's dad and I what we can do to help.
Next dilemma is to decide whether or not Luke's dad should go to the Son-Rise program in Massachusetts. We're on-the-fence as this will definitely come out-of-pocket and we have just committed to Ms. S. and Ms. K.'s program. We have to make a decision soon as there's a cancellation policy in place... and we're leaning towards not going.
I find it bizarre that when your child is first diagnosed, you're pretty much left to your own devices and you feel quite lost and desperate, and then once you've chosen a path then it seems everything falls into place... things start to happen and happen and happen; and suddenly you can relax and feel nothing but hope.
October 19
The day started with a phone call to Son-Rise, with the plan to cancel. The liaison there would not let us cancel until we spoke to Mr. B., who was going to be away for a week. So a phone call appointment was set up for Wednesday October 31, 10:45 our time. We still plan to cancel but are very willing to hear their case for their program versus ABA (EIBI).
So from what we understand there are a variety of "therapies" out there that we can employ with our money. We can choose the EIBI Plan – Early Intensive Behavioural Intervention (which we did choose), RDI program: a parent-driven program where we video-tape Luke's progress and have a consultant review and make recommendations; Son-Rise program where the child takes the lead and we copy/get into his world and when the trust is built, we take him into our world; and there are a few more that I have not yet looked into (floor-time, play therapy).
The RDI consultant called me this morning and rambled through her spiel about the program and will be sending me some information. I appreciated her returning my call and found the parental-guiding take very worthwhile and natural.
At noon Ms. B., our local advocate, came over for coffee and to give me a stack of books, articles, forms and information. She is great, and actually really reminded me of an old high school friend. She was so easy to talk to, and gave advice on a number of questions. She's a great go-to gal and I look forward to staying in touch with her. We will see her again at the autism support group for parents next week Wednesday. By the way, she loved the banana muffins as well. It was an intense 2.5 hours of input, so needless to say after Luke's dad got home I took a nap. At night I pored through the info/book on RDI and a great article/journal on biomedical therapies for the immune system. The best advice Ms. B. gave us is to rely on our instinct as we know what's best for Luke. I also think one of my gifts is a good judge of character, and from all the people we spoke with from each of the therapies I feel most confident in the Kelowna women. Luke's dad and I seem to be very much on the same page about them which is very important. Also, the RDI and Son-Rise demand a lot from the parents as far as we're the ones who run the programs (and are on our own to recruit volunteers). After I read the Son-Rise books I felt very strongly about their program and in all honesty, if Luke was my only child I would be the one-on-one person to help him through this journey. However, we have a beautiful little boy Joel who deserves our attention as well. Our days and nights can easily become consumed with decisions and prayers and thoughts and what-ifs and what-about-this with Luke, that sweet Joel may begin to feel left out. This is not what I want. With the EIBI program these women come to our house and I can "hide-away" for the 3 hours a day with Joel. Also, this is a perfect opportunity for Luke's dad to accept more shifts at the university, so we can financially stay afloat. The thing that clinched it for the EIBI program was that we meet every two weeks to discuss Luke's progress, and re-tailor the exercises to better help him; and, they basically integrate a bit of everything: play therapy, parent-involvement (they train us), relationship builidng (RDI), ABA (Applied Behavioural Analysis). The other thing I like is that they come and get to really know Luke... who he is, what he likes, what he doesn't like, what he needs, and all his special quirks. They also asked what we'd like to work on first, and of course we replied "speech", but they could also help us with potty-training (yay). They mentioned that the other families they are working with in Kamloops have seen results in 2 weeks time. So here we go... it will take a month to set up the program, hire the "interventionists", complete the training for them and for us, and finish all paperwork. So by the end November the program begins!!!
Luke update: He is very calm (always was though); he gave Joel his toy when I asked him to (!), he has great eye contact with everyone; he actually sat on Ms. B.'s lap (to her amazement); he laughs a lot; he ate all his granola bar by himself today (when I left the room and came back I noticed some was missing, so I "left" again and peeked around the corner to see him shoving the last few bites in - had to call Ms. S., the OT to tell her what happened!); he still has his tongue out often (no idea what that's about!); he is gentle, sweet, fun; he understands a lot and will "obey" little commands like "put this in the garbage", or "go sit on your chair for dinner"; he will run the opposite direction laughing when we say "bed" or "nap" or "diaper"; he still loves lids and cars (wheels); he loves to sit on mommy's lap (left knee); there is not an aggressive bone in his body, but he does flap his hands a little when he's upset or frustrated (which is not often).
We had been debating whether to start Luke on DMG as mentioned earlier, and we decided to wait until we talk to the naturopath in 2 weeks.
October 21
Okay, it may not be a big deal to most people, but I often told Luke that when he's "finished" with his plate, to bring it to the counter. This was my lame attempt to train my "boys" to bring their dirty dishes to the dishwasher area rather than have me find them everywhere (my husband was always really good at this - and he pretty much taught me :). I showed him again two days ago - it had been at least a year since I did this regularly as I'll admit, I gave up. Yesterday, I asked him to bring his "finished" plate to the counter... and he did! Walked right over to the counter, lifted it high up and put it there! It sort-of fell into the sink which kind-of upset him, but I was so quick to praise him that he was okay with it. Woo-hoo! We take huge pleasure in these tiny accomplishments...
Read an article that Ms. B. passed along this morning that researchers may have found a genetic link to Chromosome 11. I think that when genetic testing for Luke (and us) was done a couple years back during his "investigative-testing" years (for the cause of the seizures), that it was revealed that I and/or Luke had an abnormality of Chromosome 11. I have to look into this and will bring this to the attention of the neurologist when we see her November 6.
In church yesterday Luke was especially happy in the nursery... the nursery attendant said it was the first time she'd seen him laughing and giggling while playing with a toy. She said she really noticed positive changes in Luke. Also, a first: he took the pastor's son's index finger and made him get up and walk him to the nursery. The pastor's son was nervous that Luke had "mistaken" him for his parents, but I reassured him that Luke didn't care who it was. It is so neat to see Luke finally interact with other people and how thrilled people are when he actually looks at them, or gives them a high-five, a kiss, or a hand-shake. Some people have been waiting a long time for this!
October 22
Went out at night with a few girlfriends and it was very nice to be alone (without kids) and have a drink. It was also nice to talk about Luke with some beautiful Christian women that have been there since Luke's birth... and have been praying for him for a long time. One friend said we need to ditch the "label" and just say "artistic" instead :). Great advice.
October 24
Luke had his hearing test this morning. He would not cooperate with anyone touching or putting anything in his ears, but thankfully he sat "peacefully" in my arms long enough for them to do some testing without earpieces. He heard almost everything quite well, but did not respond to the very low tones, so we cannot rule out possible hearing loss. We will have another test in 6 months to see if it can be more accurate and if he will be more cooperative.
This afternoon was music therapy and Luke was shown his first PECS (Picture Exchange Communication System): a picture of a guitar and a drum. He did not quite understand the request to choose between the two pictures, but still enjoyed the many instruments introduced to him. This time, though, Luke did do a few plunks on the piano, as well as the drum. Joel joined in by playing with (and sucking on) the "bells".
Luke's dad went to the Autism Support Group for Parents tonight and learned about a new program on Saturdays that integrated learning and social skills. We will probably enrol Luke in this as it's only for 8 weeks over the winter.
October 25
Nice quiet day... best part of the day was Luke finally kissed Joel (lightly on the head). They've been "touching" hands as well... it's adorable.
I was told to write down some of Luke's "quirks" so as we see him progress we can hopefully cross some of them off the list:
> likes "bottoms" of cups, bowls
> likes to drape blankets or towels everywhere
> has to have the linen closet open, and the DVD doors open
> likes to swing things on the wall (pictures)
> does not like to have a blanket over him in bed
> usually likes to have something in one hand
> likes to turn the light on and off while eating his meals
> likes to turn cars and trucks upside down and spin the wheels
> likes to put spoons/pens down the register in the dining room
> prefers to "roll" pens and crayons than write/draw with them
> likes to drop objects behind furniture (beds and couches)
> hates the sound of us wiping the plastic table cloth
> is super-sensitive to the words "no", "electrical", and "careful"
> gets really upset when he trips/falls
> likes to spin baby food jar lids
> likes to play with the salt shaker
> likes to balance things (ie hockey stick on couch)
> does not call us to come get him out of bed (won't come out himself)
> loves his toothbrush (can brush all day)
> won't drink from a cup
> won't use utensils to eat
> often won't use fingers to eat (doesn't like to get hands dirty)
> loves music, especially Raffi CD
> likes to play with a hairbrush or comb
> likes to open/close DVD/CD drives on computer, and tap on keyboard
> likes to stand books on end (pages spread out)
October 26
Just finished with OT and ST, and Luke ate his breakfast well for them (they came to watch his eating habits), however at one point he left the table and "fell" which caused a bit of a tantrum... but it was good for the Ts to see what Luke can be like sometimes (he's usually quiet and charming). He also shoved all the banana in his mouth to the point that it fell out... but he eventually finished it all and brought the empty plate to the counter again. I think he really prides himself on finishing his plate so much so that the discomfort of a mouth-ful is not as important. Anyways, both ladies are willing to participate in Luke's EIBI program whether they join us during the 15-hour sessions, or as an additional service at other times during the week. We said we'd discuss with Ms. S. and Ms. K., our behavioural consultants. We also decided we should begin PECS (Picture Exchange Communication System) with Luke at our next visit and the OT was interested in doing an assessment of Joel for research. Luke was totally off today, which is okay as we all have off days. After they left, both J&L went to bed!
October 29
Spent the weekend in Abbotsford and Luke was adorable, as usual. He even put his finished plate on the counter at grandpa and grandma's. He's quite obsessed with grandma's buttons (drawer-full!).
He's much more vocal... says ayiyayayaya a lot, and lots of new consonants and vowel sounds. He always wants us to "play" with him and his toys behind the couch. The other really neat thing is for the first time ever he got out of bed all by himself. After he woke up, I usually give him a little time to really wake up, so I went to another room and said I'd be back to get him, but the next minute he was behind me! He did the same thing after his nap... I told him to come out of bed when he was ready... and the next thing I knew he was coming up the stairs.
Ms. S. called today to confirm an appointment for tomorrow morning. She and Ms. K. will be here from Kelowna to "play" (actually "assess") Luke at 10am Tuesday.
October 31
I forgot to mention that last Friday the official 12-page assessment arrived regarding Luke. In a nutshell it stated that Luke is at a 14-16 month level; autism with a global developmental delay. Some of the information was accurate, some was not... but we read it with a grain of salt as it is simply a guide or gauge to refer to as Luke progresses. The irony is that it finished with warnings on the undocumented / non-clinically-proven alternative therapies (such as the GFCF diet and/or vitamin and supplements).
Tuesday our behavioural consultants came by to play with Luke and confirm the hours we would like to have our interventionists come to the house (9-12 or 8:30-11:30; Monday-Friday). Ms. K. "played" with Luke for about and hour and a half, while I talked with Ms. S. about Luke. It was important to them that Luke be involved in "community" activities (we've signed him up for swim lessons), and "social" activities (we've signed him up for a music therapy play-group – a 2-hour session for 8 Saturdays). I provided them with a copy of the official assessment, my copy of Jenny McCarthy's book, as well as the link to this website. Also discussed was the next steps: that afternoon they would put in a job advertisement, and over the next two weeks would interview/screen potential employees/interventionists. They will come with resumes on November 12 in the morning, and their appointment will overlap the appointment we have already made with the OT and ST (so they can all meet). I felt very comfortable with both women and very confident in them. They were impressed by Luke's eye-contact ("nice eyes"); his request for help ("grabbing their hand"); his attention-span (for the whole 1.5 hours he never strayed from the one spot where Ms. K. kept bringing out toys); and his interest in music. The one thing that really impressed them was the fact that he gave Joel a toy (recognizing someone outside of himself), and he put his plate on the counter (imitating). They will brainstorm about Luke's erractic eating behaviour. Believe it or not, I gave Luke a little bowl of blueberries... and he ate them all (at first really wanted mommy to feed him). He did not seem to have much of an issue with sticky fingers or wet hands (they were really messy). This boy is totally playing his mom!
Since yesterday Luke has come out of his bed by himself whenever he's finished with his sleep. Today, he "snuck" out after I put him down for his nap... and he laughed and smirked (knowing he was being "sneaky"); dad put him back (without being too stern) and he stayed and fell asleep. He also climbed back in at one point which is also a first! Later in the day, he gave Joel a kiss on his lips (when mommy asked him to)... which was the most amazing thing to watch! Luke also now consistently puts his finished plate on the counter, and today brought a cup to the counter at mommy's request. I noticed he can follow two commands at once (pick up the plate, and bring it to the counter). At one time also, Joel was in his exer-saucer and dad turned around and saw that he had his teether; Luke had given it to him without any prompting. This is a really, really big deal. It is so exciting to see Luke exhibit "typical" behaviour.
Also something we can take off the quirky list: Luke no longer has his tongue sticking out.
This morning at 11am, the Son-Rise program (in Massachusetts) called. Luke's dad spoke briefly with our "counselor" there and explained our situation... how we've made an educated choice regarding Luke's therapy, and that it is entirely financially covered by our provincial government. The gentleman thankfully did not waste our time, respected our decision, and cancelled our registration with a $50.00 processing fee. We feel this is the right decision at this time.
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