step one, check!

I got the phone call I was hoping for yesterday!

 I have been trying for almost two years now to have Rhys assessed at Sunny Hill, which is a program for children with developmental delays and/or on the autism spectrum. He just turned 7, but still is at a 4 yr old level in a lot of things and we have been trying to find some answers for a while now. Well, they finally called! 

I talked to a woman who was working on our file and she was really nice and helpful. She asked me a bunch of questions on my concerns, plus the typical "how does he do with this...?" type of ones. She is going to set us up with a developmental pediatrician, a physiotherapist, a psychologist (or psychiatrist, I can't recall), a speech therapist and a social worker! (The social worker is what is the scary word.  It's the fears of what the name means, right? In the news, it is a Social worker that takes kids away from families! But I was told that she was there to advocate for him and to show us how to...more like a case worker!) 

Yay! I'm not too sure when these appointments will be made, but I'm hoping soon! Having specialists assess him could mean an eventual diagnosis, or at least something to help him from falling farther behind. He needs help in school, but not 100% of the time, so it's difficult! 

The other news is that we got a letter in the mail letting us know of an appointment for assessment at the Biochemical Diseases Clinic at BCCH.  That was out of nowhere! I hadn't heard of this place, until it was pointed out to me that it was TIDE BC, the clinic we were hoping to get him into!! They work alongside the genetics department in efforts to "prevent and treat intellectual disability", using diet or medication. (I prefer the term "delayment" as it doesn't sound so scary to me as ID!) I'm excited about this appointment, even though it's not til October. 

It's the start of something good.  The start of some important steps!  It's hard not to feel hopeful, so for now I am going to be thankful and celebrate!

Incomplete Referral

I received a letter from  Sunny Hill Development Centre this week. For a moment I actually thought that maybe, just maybe, our pediatrician sent in a referral form again without seeing us...sort of like a Christmas Miracle...and we were getting confirmation.  But, yeah, that wasn't it. It was another notice to let us know that the Referral was Incomplete and they aren't able to do anything for us until they receive these papers. This was the second request they have sent, the first one being in November 2013. *sigh*  I remember receiving the first one, in January of this year, and thinking that I'd be able to let the doctor do her part on her own, only to talk to the Centre in July and learned that they Closed our file before it could even really be opened. It was so disappointing.

Ever since then, we've been given the run-around by everyone. Our own family doctor is trying to help us out where she can, by talking to Sunny Hill and by sending off a letter professionally suggesting that the doctor should help us out and get those files sent, but she can only do so much. Unfortuately, those forms need to be filled out by a specialist.

We did have the pediatrician's office call me last month letting me know that it wasn't their fault that the forms weren't filled out correctly, but the locum doctor who was on while our ped was on maternity leave. She filled them out in August of 2013. However, the first notice from Sunny Hill was sent in November, when our pediatrician was back at work full time, making it her fault for not following up.

We were told, however, that she would fill the forms out again and send them off for us, but we had to get a referral from our family doctor to see her first and she'd do have to do another check up on Rhys, since it has been a year since we've been there. 

I told my doctor, who supposedly sent off that referral, but we haven't heard anything back yet.

After this letter, I am feeling so done with this pediatrician.  We haven't liked her since the beginning when she was caring for Kai in 2004-05, but I stuck with her because it was easier than finding a new doctor and having to go through the whole process all over again.  But I have decided to get over those feelings of misplaced loyalty. When I saw our family doctor this week and showed her the letter, I requested a new pediatrician. I will ask at Dr Tandan's office for our files. Hopefully 2015 will get us somewhere.  All we want is an assessment done on Rhys!

He is doing so well in Kindergarten and does fit in well there; in fact he is blossoming! He is full of excitement and energy and loves to go!  I don't have any doubts with him being there at all!  

At our parent-teacher interview in November, the teacher talked of how he loves school, and is helpful and offers to help out a lot (we see that at home too). He loves to give hugs, but he is learning to do high-fives more (remember our Speech Therapist saying he needed to work on that? it was sad, but it's gotten better!), although he has no concept of personal space! haha. Don't we know it! Her report was written very positive, but she mentioned how he "can be silly" and sometimes he goes off task at carpet time, so he's a bit delayed in that way. As well as in Speech. I'm not too sure what they will do about that yet. We haven't heard from the Education Assistant yet, but I will be meeting with her in the new year. He is starting to remember names and letters too, but not nearly as many as he should be. But I am so happy with how much he has gained already since starting school full time!

Sometimes I want to pretend all is fine and normal with him, but there are signs that make him "different", and I don't know how to help him. He isn't doing "too bad". But these things need to be addressed before he gets too old and they can't be.

Assessment Reports and updates

We finally received the report from the Centre for Child Development's Communication Therapy that Rhys had earlier this year. We only saw Rina for a few months, just enough time to get the testing done and work on a few things. It almost seemed useless to me, since we didn't get to work on anything long enough, but having this report done is a good start, and I was able to pass along a copy to the school.

The report shouldn't have been a surprise, but it still hits me hard when I see it in print at how my child is behind, or not deemed "typical" or "normal".

The summery states that his receptive language (understanding) is "low average", and he has "mild delay" for expressive language, and "moderately delayed" for speech sounds. However, his non-verbal communication is age appropriate, and has appropriate eye contact, and plays well with a good imagination. His CT noted that he is a visual learner and benefits with a lot of warnings leading up to transitions, since he struggles with changes. (such as a game ending or having to leave somewhere.)

The break-down of his scores was sad to see. The average Standard Score is between 85-115 and he was evaluated with 3 out of 4 under that.  The Scaled Score average is 7-13 and he scored 3 out of 7, with 1 being borderline, below that.  The average Percentile is 16th-85th and his results show that 6 out of 11 fall below. This was for the Clinical Evaluation of Language Fundamentals, such as sentence structure, expressive vocabulary, concepts and following directions, word classes-receptive and expressive, core language and language content.

The good news is this: he is very social and has a great imagination and does love to talk. And I remind myself that he is doing so well in school! He is loving kindergarten! When I see all of the steps he has taken, and how much he has grown in just a year, I can't help but feel excited and relieved. So far his delays haven't kept him from anything in school, and that makes me happy.

*****
We also received an assessment from the Genetics Dept from our appointment in August. It was a detailed report explaining the physical examination (he is in the 15th percentile for height and head circumference, and 3rd to 15th for weight), and it sounds that everything is normal and healthy, thankfully. It also listed his prior investigations as being normal or unremarkable (head CT scan, chromosome analysis, urine).  The big news we were waiting for was written at the end as the doctor's impressions: "Rhys is a young man with developmental problems and dysmorphic features that are not pathognomonic of a genetic syndrome known to me."  Which is what we were expecting. That there wasn't anything obvious. We are still waiting for the results of his blood tests.

****
I have talked to my doctor a few times regarding our referral to Sunny Hill, which wasn't completed and therefore our file was closed before it could even be opened. It was the doctor who sent in the referral, but it was the pediatrician that was supposed to give me forms to fill out (she didn't). Apparently, the referral department at Sunny Hill tried to contact the pediatrician several times to get the information needed, but she never returned their calls. *sigh*  I am so frustrated with her!  My doctor is going to see if sending her a letter on our behalf will help get the pediatrician working for us, but I don't know.  I would love to avoid seeing her altogether, but maybe I have to just be strong and go in and get that referral done!

So that is what we are at. Now you know too.

My little Hug Monster...and ST update

Rhys has been attending Speech Therapy through the Development Centre this year (yes, finally something worked in our favour from our pediatrician!) and the ST has finally finished up her testing. As she was doing the last of the questions, I realized that what she was asking from her book weren't necessarily speech related. (Such as: listen to my instructions then follow, point to the cat, then point to the dog....or point to the bear that is beside the cat....or out of these three pictures, an apple, an orange and a ball, which two are the most alike and why?) I thought that was curious. I wasn't bothered because I figure the more testing that is done for him, the better! (if you remember me mentioning them before, the Centre for Child Development is a huge organization that deals with children of all types of special needs. We tried to get Rhys into their preschool, but it never worked out, and our pediatrician got him in for ST this year, so this is a good group to be connected with while we learn about Rhys' delayment) 

At the end of our session, she said that she will go over his results and then call us and we can find out "which area he is weak in" (her words.) I already told her that he has always struggled with being able to follow two or three instructions (ie: go to your room and get your shoes and bring them here. He gets lost after the first instruction.)   I am curious to the results, because I wouldn't have thought those to be "speech" type questions, as much as they are problem solving ones. But I did have a friend tell me that it is a part of language comprehension and they were standard assessment questions, so that does make me feel a little less confused. We'll see what she says!  We are running out of time though. We had to miss two months of ST due to either Rina or myself, or both of us, being sick. (stomach bugs were running around for a long time earlier this Spring. It was horrible!) and once Rhys starts kindergarten in the fall, once again, he will be phased out of the program! *sigh*


Another thing that she mentioned made me a bit sad though. She wants me to go over with him his hugging. Rhys is extremely affectionate! He loves to give hugs to people he knows and will give multiple ones! (he hugged the ST a good 3 or 4 times today, lol) She wants him to learn to NOT do that, but to give high fives or handshakes instead, which of course made me sad. I understand WHY she thinks this needs to be really pushed (he needs to learn social boundaries and personal space, etc) but I was also sad, thinking that this is part of his enthusiastic personality. Funny thing is that she was reading my mind because she added, "we don't want to stop him from being "him" and change his personality, but he needs to learn boundaries." Rhys loves to give hugs and kisses! His preschool teachers and Sunday School teachers and our friends don't mind, but I guess eventually we will meet people outside of those places who won't like it as much. (the ST mentioned how some kids in kindergarten may not like it as much....but I was thinking that he doesn't actually hug other children, lol!)


So yeah. There's that. It's a bit sad that it has come to this. My affectionate child needs to be less excited when seeing people! I'm hoping that I can convince him that teachers would rather be high-fived or even fist-bumped instead!!!So far, he remembers sometimes to stop and ask, but mostly it is done randomly and so quickly that I can't catch it in time.

Once, we were walking into the high school to pick up the boys (they hang out in the library after school with their friend, since his mom is the librarian and they can play on the computers) and Rhys was running on ahead, giggling. There are some kids sitting outside at the front doors, two girls in particular that I notice, and I just KNOW what is going to happen.  Rhys pauses for a moment, spins on his feet, and runs over the closest girl and flings his arms around her! This of course, makes her jump as she wasn't even looking in his direction! It made me laugh, to be honest, knowing how huggy and sweet he is, but I also felt bad that I didn't get to warn her first! I tried to call out "random hugger!" to the next girl, but it caught her by surprise too! After he was finished hugging these girls, he ran away just as fast and kept on going into the school!

This boy makes me smile!  So far, no one has been upset with his hugs. (although, one day he was going around and hugging all of Abi's friends after school and one, who is not much of an outwardly affectionate person apparently, refused to respond to his open armed invitation to a hug. He waited, standing there with a cute grin, arms outstretched. But eventually moved on, unphased. Some progress!)  I can't help but think, "Who wouldn't want a hug from this kid? He is just so sweet and enthousiastic!"  But I guess eventually we will find someone who really doesn't like it. And, as much as it makes me sad to think about it, I need him to learn personal boundaries now. Hugs are cute from a preschooler, but not so much from a grade three'er or a grade seven'er.  Okay, let me rephrase that: hugs are great from everyone, no matter the age. They just are awkward when it is one sided and abrupt and from strangers. 

new referrals

So that's what it feels like to advocate for your child.

I feel weary. And emotional. But that could be unrelated; after all, my thyroid is all wonky and I have a sinus cold.

A few weeks ago, one of Rhys' preschool teachers suggested doing an updated ASQ. She did two of them during class time, and I filled out the ASQ-SE for 60 Month/5 Year. Filling those out feel make me feel so sad. It's hard to see the limitations that your child has right in front of you. But I was surprised, and also relieved, to see that Ms. Harmony had a few different results than I did. When I filled out The Ages & Stages Questionnaire: Social Emotional, my results (I found out that the scoring guidelines were written on the back on the questionnaire) showed him "at risk". Actually, the recommendations on the back were to "refer the child for a mental health evaluation." Which sounds much scarier than 'seek a second opinion' or 'refer to doctor'. Thankfully, the result in class were just fine! What a relief! He is totally on par with his peers on a social/emotional level. So either he only "acts out" at home, or his behavior is actually considered 'normal'. Needless to say, I've been paying more attention to it at home now. 

Interestingly enough, I answered "most of the time" to the question on whether he could settle himself down after periods of exciting activity. Ms. Harmony checked off "rarely or never".  (I can see that now if I really look at it. Yes, he does take some time to unwind when he gets excited and giddy.)  To the question "does your child cry, scream, or have tantrums for long periods of time", I responded "most of the time", and again, she said "rarely or never". (oh, this boy can be very determined when he is upset and wants something. But in some cases, yes, I guess he can be distracted to something else. Sometimes.) In class, he moves from activities just fine, and loves to explore new places, which are two things I had never noticed at home.  So my concerns are not a reality in preschool right now, and what a wonderful thing to realize!

Ms. Harmony also did a regular ASQ on him, which is for a child 57 Months through 66 Months (good grief, I'd be happy if they stopped using weeks and months after 6 weeks and just went to years in stages! It's too much counting and figuring out for my little math-challenged head!) ----he was 64 Months when this test was done (end of October)  His last ASQ through IDP was done at 10 months old, when he scored above the at-risk level for everything except gross motor, where he was not rolling over or crawling or pulling to stand yet. I do have a Gessell Developmental Assessment report done at 17 Months old, but I am thinking of emailing our former IDP Consultant for the results of the one done at 3 years old, since I can't seem to find it. It would be nice to see how things compare now to then. Has he gained or lost? Did we not have any concerns then?

In the 60 Month ASQ, he scored low for Communication (not surprising, since he was in ST...and I am frustrated that he was phased out and forgotten by SESLP.), Gross Motor (not surprising, considering he always has), Problem Solving (which is sad, since he was in range at 17 Months old)  He is on par for his peers for his Fine Motor (actually, his teacher was impressed with his drawing and cutting skills. Oh yeah! *brag*brag*) and his Personal Social. (just like his earlier SE said!)  The results suggest that "further assessment with a professional may be needed."  (that sounds much nicer than saying he needs a mental health eval!)

His teacher said that she could put a referral in for us to the Langley Child Development Centre (you may remember our conversation here), and so I got a phone call from a supervisor there. That was frustrating! I had to explain to her all the things that were a concern about Rhys, but how do I explain it? It's not obvious. He acts, behaves and talks differently, but how do I put small incidents into words so that it doesn't look like an over-reacting mother? I want to say "don't you see this? that isn't typical, is it? what is going on?'

I thought the SCD would be able to help me---and in a way, they have. But not in the way I expected. I had hoped that they'd have Rhys come in and they'd assess him and they'd get me the resources I needed. But since he doesn't need any support in the classroom (which is a good thing), they aren't going to open a case for him.

*sigh*

I understand. And I am happy his needs aren't glaring. And I do appreciate that they aren't going to waste my time and raise my hopes, but I also feel deflated. I guess my hopes were already raised by my own doing.

The Supervisor did give me a few suggestions though. The first was to get our pediatrician to refer us to Sunny Hill, in Vancouver. But seeing as this hasn't been the top of Dr T's list, I'm going to skip her and get our Family Doctor to do it. (she has offered to look into Rhys already, to see if she can come up with anything)   The wait list there is likely a year long as well, but it's a start.  I had never heard of Sunny Hill when she mentioned it, but I recognize it now from the fundraising they do. It is a centre at the Children's Hospital that deals with disabilities in children and youth, for rehabilitation and development. They will do full assessments and have a have full staff to cover everything. So it may be a good place to check out.

The other suggestion was to speak to our principal at the children's school (and where R will attend K next year). I'm not too sure what to talk to her about thought. I have nothing to bring in to her, other than ASQs say that he is delayed. I don't know what kind of support he will need or what options they have available. So I am putting this off until the new year.

 She did also suggest that maybe we'd like to have a developmental assessment done on him privately (she gave me two names to check out), but she warned me that could cost anywhere from $1000 to $2500. Eek! Yeah, no. Thanks though, but we don't have that kind of money to use on something like this. (my friend just told me last week that she and her husband were looking into that for their daughter, who has ADHD and maybe some other issues, and it was going to cost them $5000! Yikes!) So I'm praying that our assessment can be done at the Children's Hospital, where it won't cost us anything.

Sometimes I look at Rhys and see that things are okay. He's playing well with other kids. He does regular things. And I let myself see that maybe it's all in my head. But then I am reminded that this has always been there, in the back, and we've always kept it there, but his delayment has been there in various forms since birth. And I am frustrated that I can't pin it down and I don't know what to do.


Last week, on our drive to the school to pick up the Olders, I was going over colours with the Youngers again. I do that every now and then. I'll tell them at each stop light that "green means go and red means stop" and then I get them to tell me which colour is showing. It's fun when they get it and can tell me when to go! For a while, in the summer, it seemed as though Rhys was starting to get it, but I can see how it's all been forgotten now. At each and every stop (which happened to be red for each one), which aren't that far apart, just a few blocks, I would ask again, and at each stop he would not remember. I can understand needing to remind him, but he should've been able to guess or start to recall by the second or third stop. And he couldn't. It was tough. Even he could tell! He said to me, "I don't know why I can't 'member!", with a shake of his head. I just tried to smile and encouragingly said, "that's ok, you'll get it soon!" 

Eden is starting to get it. She has Pink and Orange and Green figured out a good 90% of the time! *smile*

But he'll get it soon. I hope.

doctors, labels and not smart football players

I had a some-what funny conversation with my Dad a week or so ago. He had popped by since he was in the area and visited for half an hour. It was a nice surprise!  He was mentioning that he needed to do a blood test before his doctors appointment that week. I said I had to do a test on Rhys before his appointment next week as well. My Dad wanted to know why he needed to go to the pediatrician, so I said it was because he's delayed and we wanted to know why. His response was "So what? Some kids are not as smart as others."  Uhm....ok. Thanks Dad, that's great.  "He can play football. They're not very smart!" *snicker* Ok, good to know!

Yeah. My Dad comes from Old School thinking.

I think it's great that he can be so accepting that my son may not be as "smart as others", but this isn't about his intellegence, it's about his being behind by a few years. (as Hunny put it.) For me it's about finding out if there is anything we can do for Rhys, and if there is, let's do it now please!

We don't live like our parents did--where handicapped children were just the "retarded sibling" who couldn't do anything and had no chance. Today we have more resources available. And I'd like to use what I can to get Rhys as caught up as possible!

I wasn't offended or hurt by my Dad's comment. I did appreciate that he was so nonchalant about the whole thing and that it wouldn't be a big deal if Rhys were special needs in the end. But it did make me shake my head. I guess it's a good thing I've got 4 other "smart" children! LOL *smile*

It's hard to explain to family and friends who just don't see it as we do. Sure, R is immature, but so what, right?  Maybe they're being kind and making excuses is easier for them. But I made excuses too. It wasn't until I pulled all of his old medical notes and such earlier that I was faced with it. Rhys was at a 30-36ms range when he was 40ms old, according to a Gessel Developmental Stage quiz. (that's 2 1/2-3yrs when he was 3 1/2) I kept saying what everyone else said, "he'll get it one day", or "he has older siblings who help him", and "he's a boy!" But finally I had to stop and realize that he HADN'T caught up. And I don't know if he will or not. He may always be immature, but then finally "get it". I don't know. But as a parent, I need to know what are the expectations. When he screeches at me and wails "nooooo!" at every answer he doesn't want to hear or seem to understand, is this something that I need to correct or is it something that comes with his undiagnosed issue?

In May, Dr T added another label to Rhys' chart. She didn't tell me, of course. I just saw that it was written on the requisition for bloodwork. She wrote that he was FTT (failure to thrive. ugh I hate that title) and GDD. That one made me stop.  I had been looking at Global Developmental Delay for some time, but I had always shrugged it off that I didn't think he was. He could do more than what was listed, I was sure! But then I found this list on Kids Growth, and my heart hurt.

A Global Developmental Delay is a  general term used to describe a condition that occurs during the developmental period of a child's life (birth to age 18).

  

Common signs may include:

• delayed acquisition of milestones: the child is late in sitting up, crawling, walking
• limited reasoning or conceptual abilities
• fine/gross motor difficulties
• poor social skills/judgment
• aggressive behaviour as a coping skill
• communication problems

But since she didn't mention this to me at all, I don't know what to do. What does it mean? What should I be doing? ARGH!

********

This week we had our monthly visit with Dr T, except that it wasn't her, it was her locum; she's off having her 3rd child.  This doctor came from the Children's hospital and had an agreeable disposition which I liked and trusted.  I don't know if I'll see him again though, since he gave us a month off for our next appointment! We don't go back until September! Woohoo! (see, I told you  they are running out of things to do for him!)  The doctor wants me to contact the Centre for Child Development again to make sure we are on the wait list for preschool, just to keep our name out there and to confirm with them that he is attending preschool and not kindergarten.  But I feel torn about this.  See, as much as it would maybe be good to be at the Centre, it just does not fit in with scheduling. The Olders attend school in Langley, and the Centre is in the complete opposite direction in Surrey. There is no possible way I could make it for the morning class, or make it to pick up the Olders from school on time if R were in the afternoon class. Which is why we decided to go with the preschool that is at the school the Olders attend. But I struggled with the thoughts that if we truly were interested in Rhys' best, we'd make it work for him to go to the preschool at the Centre (if we were to get a spot, that is)...oh the Mommy Guilt!

At first, Dr N wanted me to contact the Speech Therapist about getting him back in for a consult. They saw him last in December and said that he was doing fine and that we could take the winter off. They'd contact us again in March. Except they didn't, and I didn't call them either since we were busy with Dr T and he was speaking so much better. (and, frankly I was annoyed with them!) But now he is five and I don't know if he's "graduated" from their program or not, or could he go back since technically he isn't registered at any school for the Fall? (you leave Speech once you start school, so you either graduate and are now at par with your peers, or you seek private ST, which is what we had to do for Kai.) They should've contacted us again since he was turning five and starting kindergarten age, as they like to work hardest on the older kids in the spring. But I'm sure if I call them, they'll make it out to be me who should've called them. *sigh* So I wasn't looking forward to that. But then Dr N decided to not have me call the ST, but to call the Centre. I'm trying to decide which one I'd rather do!

Regarding his stool test, everything is normal. Yay. Not too sure what that means regarding his elevated IgE, but I'm not going to worry about it. So far everything is coming back normal. Which is great in that he's not unhealthy, but it's sad in that we don't have anything else to go on.

*********
In other good news, I FINALLY got a hold of Kai's cardiology reception!  I had only been trying to contact them since the end of May! I had left so many messages on their machine; I was starting to get rather ticked off! I had our doctor fax in our referral to see the cardiologist (and I know that would've been done that afternoon, as her receptionist, Theresa, is good!) and so I was just waiting for a date for our appointment.  Except, things got even more frustrating.

Kai needed refills on his prescriptions. (he's taking Ramipril and Carvedilol currently) but when I called our pharmacy, his one medication had expired! Oh great! So I added that to my message on the cardiologist machine! Two days later. the pharmacist called me to say that they couldn't refill it because our cardiologist was on holidays, and oh, it was time for Kai to go back in for his annual checkup! I admit that I was a *bit* annoyed at the pharmacist for informing me of that, as if it were my fault he hadn't been in and that his prescription expired!  I let her know, somewhat tersely, that I was aware and I had been trying to call since May and hadn't heard back from the doctor's office despite all my messages!  The pharmacist's response was that maybe I needed to go in to the walk-in clinic for a prescription renewal. *sigh*

I did get him an appointment with our regular doctor instead of having to go see someone at a clinic and needing to go over all the little details, ugh!  But then two days after that, the pharmacist called me to let me know that one of the cardiologist's associates approved our medication, yay! Oh! And that afternoon, I finally got a hold of the receptionist! And I was nice and polite and didn't tell her how frustrated I was at her never calling me back! Instead I let her book the appointment for next month (when Dr H is back) in her cheery voice! So at least that is done!!!

Repeat After Me

Eden is 23 months old and is starting to put together words, this week it's the beginning of 2 and 3 word sentences, which is so exciting! Rhys didn't pick that up until he was 3 1/2 or 4!  It is so surprising for me to see the differences between Eden and the others. Part of it may be from her being a girl, because for sure, both she and Abi had no trouble speaking, but it was painful getting my boys to grasp the skill to turn tongue from babbles to words. A part of it may be largely to her personality too; she is one powerhouse! She is strong in muscle and in her attitude! She delights me as well as frustrates me!

Last night, she woke up at one in the morning crying, of course, just as I was going to bed. (She always seems to know when I'm just ready in bed) I had hopes that since she stopped crying by the time I got out of the bathroom that she had fallen back asleep, but deep down I knew that wasn't likely. Sure enough, she's sitting up in her crib, eyes wide awake, just waiting for me to rescue her. Phooey.  But I'll admit it, as much as I find it frustrating that she wakes up a good 98% of the time, I also do love snuggling with a sleepy child!  Except, this one wasn't sleepy! :(

I'm carrying her down the hall, whispering to her, hugging her and asking, "What happened?"
"Ha'pn."
"What's wrong?" I try again.
"wrong." she repeats
"Are you hungry?"
"hung'y."
Ok. Maybe we're getting somewhere.  We go into the kitchen and I open the fridge. I offer some cheese, she shakes her head. I offer her a rice cake. Another stiff response. Is she thirsty? Negative. Ok, so there's nothing in the kitchen she wants. She sees the Keurig. "Daddy?" She already knows that Daddy uses the machine for his coffee!
"Daddy's in bed."
"bed?"
"yes, he's sleeping," I explain.
"seeping?"
"yes."
"why?"
"well, it's nighttime. Do you see how dark it is outside?" We walk into the darkened living room.
"dark side."
"Yes. It's time for bed."
"Noooo!" she starts to cry as we head down the hall.
I have to stop and turn back so that she doesn't wake anyone else up. I cradle her head to my chest and kiss her temple. She is so precious and still so new. "What's wrong?"
"wrong." she repeats.
"You don't want to go to bed?"
"bed."
Ok, we are getting no where with this!  "Do you want to go to bed with Mama?" I offer.
"bed."
"yes, with me."
"bed."
"Yes, it's bedtime and I'm tired. Let's go!"
"go."

As soon as we snuggle up in bed at 1:30am, she gets herself cozy and falls asleep. I wish it were that easy for me! It's such a delight to hear her little voice speak real words, but sometimes getting any real answers out of her isn't easy. She loves to repeat the last word you say!

my boy

Rhys is a *bit* delayed.  Just a little. Okay, maybe a lot, I don't know. He's been seen by Michele, from Infant Development Program (which actually changed their name this year, but I can't remember what to), since he was a few months old due to his premature birth. (She also came and saw the older two boys when they were little, so she's been in our family for almost 8 years! That's neat to think of!)  According to her Assessment quiz, or whatever it was, Rhys is placed anywhere from 30-36 months of age.  He is actually 40 months old, if I can count properly!  This result doesn't surprise me (and this was just her quick assessment after his testing, and not the whole explained result. I'll get that this week when she comes.) To me, he looks and acts like a 2 1/2 year old, not a child who turned 3 in the summer. He seems smaller, younger...more babyish than child-like. But maybe that's why I love him so much. His baby-ness is endearing to me! He's cute and sweet and so innocent and cuddly. I don't want him to outgrow this yet!  Okay, sometimes I do! But I love his personality, and if having him lose it because he ages, I'd rather he stay little!

We're working on his speech right now, as that is where he is the furthest behind. This is like old hat to me, though, and I'm not worried. We went through this with Kai, and started the process with Bryn, and now here we are with Rhys...what is up with my boys??? :)  I vividly remember the whole long journey with Kai; the painful, stressful, disheartening journey. I don't remember anything with Byrn; how long he was delayed for, what his actual struggle was, none of it! I just remember feeling as though he'd "get it" in time. And, sure enough, when we were placed on the waiting list for speech therapy, by the time we were called, he had caught up!

I still do feel that Rhys will "get it" soon too, and he is, but we have been seen at Surrey Early Speech and Language, where Kai was seen for two years. That was a mixed feeling for me. For one, I wasn't too sure I wanted him to be seen by the ST we were assigned since I remembered her from three years earlier as being a bit stand-off-ish and not warm. Secondly, I didn't really think we needed therapy. I was sure that Rhys would take off on his own soon! I went in thinking it wouldn't be worth my time, to be honest.  (plus, I had to bring in all of the other kids and that's stressful for me. I don't like taking them all with me when we need to see any type of professional) Yes, he was delayed just like Kai was, but he was also so different than him too. Rhys was actually interested in speaking, he just didn't know how or wasn't given the time he needed or...or something. He was delayed but willing to learn. Whereas Kai was not and was such a struggle to get to participate and respond in anything other than grunts; he was so difficult! So I went to our initial appointment with the thoughts that we wouldn't need to do this, that things would work out, that whatever it was that was holding Rhys back would be solved.

How surprised I was to find that I was annoyed with the ST for brushing us off! Well, maybe she didn't really brush us off, but she didn't give any indication that she thought he was needing immediate attention. Instead, she wanted me to attend this parent workshop and then call her for a follow-up assessment in December! She wasn't doing her job and wanted me to do it instead! I was so frustrated with her! I know, how arrogant of me, eh?  I didn't think Rhys needed therapy like Kai did and when she agreed with me in unspoken terms, I was upset! It made no sense!

But, each week, I dutifully attended this parent workshop that was designed to teach parents techniques on getting their child to the next level of speech and how to avoid the things they were doing to hold them back in their development. I went because I had to, because if I didn't, it would make me look bad. I left the first night, not armed with new information or skills (it was info I'd already been told many times before....repeat, repeat, repeat, use 1 word when talking..etc) but with a realization of how my own attitude may have been holding him back!  I sat with a good 10 other couples who actually wanted to be there! In fact, one mom was wanting the help so badly that she had brought along her parents, her brother and his wife, as they all wanted to support and help her out! That blew me away! And a foster mother was there because three of her charges were delayed!  These people came because they thought this was going to help and they welcomed that and they desired to learn some skills! I came because I wanted to. How arrogant of me!

Since starting, Rhys' speech has grown big time! He is starting to use 2-word sentences now (YAY!) and his vocabulary has expanded! It's awesome! I don't think it's because of these classes, to be honest. I think he picked them up on his own. But these classes did help me out. I'm still not too sure what is causing his delayment, but I do wonder if it's because we rush too much. We think we're helping him, but we're speaking for him, supplying him with the answers, and not sitting back and letting him initiate.  We had some homework with our classes, which included setting aside 10 minutes...just 10...where we interacted with the child but were not allowed to respond or talk or fill in answers until we counted to 10 slowly! (So we'd say something, wait to see if they'd respond and then count before saying something again. 1 mississippi, 2 mississippi, 3 mississippi....) That was painfully hard! We naturally want to fill in the spaces of silence. The other one was where we had to spend half an hour NOT asking questions! That was difficult as well. How do you NOT?  It's something parents are constantly doing. What do you see there? Do you hear that? Would you like this? What is wrong? Where is the...?  But when we ask these types of questions to a speech-delayed child, it doesn't give them a chance to expand on their vocabulary. They can point, grunt or just say Yes in response to many of them!  So I've learned a few things. :)

This week, Rhys showed off not only his understanding of words but that he was starting to grow his conversation skills too! (most speech-delayed children are delayed in their vocalization but not in their understanding, which can make it difficult for parents. We know he can understand a lot yet we need to cut back our speaking to a lower level just to give them the chance to respond.)  I've been teaching him that he is a boy and I am a girl, and who our family is. He did not seem to know this last month at the testing, but now he gets it!

We were out shopping as a family on the weekend when Hunny stops at Best Buy for a new sensor bar for our wii (turns out that one of the bunnies had bit through the wires of our old one!) Abi doesn't want to go in, and Eden is sleeping, and frankly, I had no interest in going inside, so we decided to stay in the van. Now, Rhys is the only one left in a 5-point harness car seat (other than Eden, obviously)  so unfortunately, if he can be left in the vehicle, he will be, just for the inconvenience of taking him in and out of his seat. Which is what Hunny was preparing to do at the store. But Rhys starts to cry, saying "me....me....me!" He wanted out too! As B and Kai are climbing out of the van, Hunny says, "I'm sorry, Rhys, I'm going with just The Boys!"  And Rhys says clearly, "Me Boy!" pointing to his chest emphatically!

Can't argue with that! He got to go too! :)

I love my boy. He is my cuddle bug still. He's sensitive. He's cute. He's witty. And he's starting to grow up. And that's exciting. And sad. But mostly exciting.

Speech again

Kai got a note sent home from school recently; it's been sitting on my kitchen counter and I haven't responded to it yet. The note irks me and it probably shouldn't. But it does. It came from the Learning Assistance Coordinator regarding his speech needs. They suggest that he participate in a "muscle-based therapy approach" that is "highly recommended" by a Speech and Language Therapist contracted by the school.

Now, to get it across, I am not against him needing more speech therapy, nor am I against this program or even the note. It's just that I am feeling frustrated that we have this in the first place, when I mentioned it last year that he still needed therapy. But then, they shrugged me off with a "all grade one children pronounce things wrong" comment, even when I knew they didn't. Just Kai.

He still struggles with pronouncing Ls and Rs. Case in point: the other day, while in the van driving to church, he was telling us about this "squorol" that came with some action figure. (I really had no idea what he was talking about, and even after learning what he said, I was still confused!) I corrected him in my head that he said SCROLL. It's what made sense to me. This figure came with a scroll. Okay. But I was wrong. Abi tried to decifer what he was saying as well, and we finally learned that he said it came with a SQUIRREL. (yeah, I don't get it!) It's simple words like that that he can't nunciate. Things that he's struggled with for over a year.

When he was in Kindergarten, he attended Speech Therapy at a private clinic on a bi-weekly basis until his ST said that he had graduated to his grade level by that Spring. We were pleased; all was well. He still continued some assistance in class, but we all thought he was good enough at the end of the year. When grade one arrived, I wondered if he'd need to see the Learning Assistance during school again, and after the first month passed, I inquired about it, just to have the coordinator tell me it wasn't necessary as he was still within that grade one acceptability level. I didn't agree, but let it slide. After all, they didn't feel he needed it and I didn't want to burden over-worked LA staff by fighting it, and we couldn't afford the fee at the private clinic, so there wasn't much I could do. But as the year started to wind down, and his speech didn't get any better, I was starting to feel a bit concerned. So this year, I was hoping for someone else at school to notice it too! Thankfully, I was able to talk to his teacher about it in September, and she agreed to his delayment. Thus the note.

Yet it still sits on my kitchen counter. I haven't sent the permission slip back yet and it's been two weeks. I know he needs the help, but I'm not too sure if this program is going to do it. It's the same one he was on in Kindergarten, using horns and straws "to develop specific muscle skill, tone and strength needed for proper speech." Did it help him in Kindergarten? Is it going to help him now? I feel torn. Although, the $30 for the (non-reusable) straws and horns is a better price than paying for private therapy, I am still feeling unsure.

Kai still needs help, it's obvious (thankfully, he hasn't noticed his struggles and he doesn't feel embarrassed by his pronunciation. I'd hate for him to be weighed down by this.) but I worry about choosing the right method with him. Maybe this is the way to go for now, and we assess it again in January. I should just sign the silly note and get his therapy going, shouldn't I?!

*sigh*

he is getting SO BIG!!!

Kai keeps getting bigger! He keeps growing on me and it's exciting…and bittersweet. He's outgrowing his clothes, so I'll have to update his wardrobe soon. (I'm trying to hold off though, since it'll be summer and the clothes of choice will be shorts anyways!) He's getting taller, too. But not just in his physical appearance, he's getting OLDER. His personality is starting to blossom. He is such a delight!

Just a year ago at this time, he was struggling with his speech, having trouble with respect, refusing to potty train, and generally being difficult. *sigh* It was tough!

But now….

He has just grown so much. The other day, I spied him helping out a little sister of one of his friends. She wanted to know where her brother was (she's around 2 years old), so he put his arm around her shoulders and walked her over to him! Later, I see him with her on the playground, his hand in hers, as he takes her over to the slides. How gentle and sweet! It was so nice, and quite the surprise to see! Kai can seem to be such a "bully" at times (he pushes his brother, he takes toys from his sister, growls when he doesn't get his way…) that I worry that he's respectful and nice and caring to others. What a relief!



Last week, we got three pieces of Good News about him. The first one came from his Kindergarten teacher: lately, she has been preparing the class that after this school year ends, then comes summer, then they will return and go to Grade One!!! Kai is so excited! He keeps asking if school is over yet! His teacher confirmed for us that yes, Kai is indeed ready for Grade one!!! How wonderful! I had a feeling, but it was much nicer to have someone agree with us who matters more than just a parent's hope!

The second piece of good news comes from his Cardiologist, Dr. Hosking. (I love that man!) We had another apointment with him, with his usual Echocardiogram and ECG tests. He was weighed at 15.1kg (33.5 lbs) and measured at 105cm (3' 5.5") So he's gained a kilogram in half a year! Yay! (he's still so small, LOL!) The doctor told us that according to the Biopsy (catheterization surgery in April 2008) we have no new info, but there is some type of scar tissue on his heart. Or rather, it's a type of tissue that is formed before scar tissue is made. (there is obviously a term for it, but I forgot to write it down) There are three different ways this could've come about, the first one we were able to cross of immediately, the second reason is from an inflamation that occurred in the heart muscle that had healed itself, and the third is one that is still "iffy". Hosking is convinced it's from an acute event that caused Kai's heart to enlarge, one that wasn't big enough to warrent hospitalization, so much so that we may not have realized it happened, but effected his heart, which is why it reacted the way it did.

What he sees from the tests are that there is no change in the heart muscle. The numbers are identical to what they were in September when we saw him last! That is EXCELLENT news!!! There is no active inflamation, his enzymes are normal, the pressure in his lungs are normal. Everything is looking the same. So while Kai's heart hasn't gotten smaller, it hasn't gotten bigger either! Dr. Hosking is wondering if maybe Kai's heart, the pump, and squeeze and all those other terms he likes to use that go over my head, are just the way his heart is. The medications don't seem to be doing anything to the condition, and if that is the case, then why do we continue with them? So he is going to do it the "coward's way" (his term!) and instead of weaning Kai off his three medications, he is going to keep him at the same doseages and let him outgrow them. Seems ok to me. The Best news was when he told us that he doesn't need to see Kai for another YEAR!!! To me, that spoke of confidence, and it made me feel so good.

I am so happy that his heart is doing "Well." This is such a relief for me! As I mentioned before, my biggest worry was that Kai would collapse one day during gym class, and so I asked the doctor about that, to which he said that while we can't say he will never go into Heart Failure (a terribly scary word), things are looking well. That lifted my heart as well. I guess my worry is that something could happen to him suddenly, that he would or could die in an instant. My fears are silly because I know that the children that do pass suddenly like that, the parents were unaware of any exisiting heart conditions, whereas we are prepared for that in Kai. And it likely won't happen out of the blue either. Or one could hope. *biting lip* It's hard not to worry for your child's health. You want them to live forever, to grow, to change, to live life. You don't want to see them suffer, to grow frail, to struggle, or to die prematurely.

But what does it mean to "die before their time"? or "prematurely", really? If you think about it, the statement doesn't make a lot of sense. After all, the Lord God is the author of life. He created life, He breathed life into everything, He forsees and sustains life. He calls us Home when it is Right and Of Time. Not before. Everything is done perfectly in His time. So when we say that someone died before Their Time, that isn't possible. God knows the numbers of days we will spend on earth, therefore if our numbers are a lot shorter than we'd like this side of heaven, it is Good. But oh so hard.

*sigh* "Oh death, where is your victory? Oh death, where is your sting?…. But thank God! He gives us victory over sin and death through our Lord Jesus Christ!" i Cor 15:55 & 57

The Third thing that was Good News for Kai was from his Speech Pathologist, Dara. Last week, she stated that he is doing so well that we only need to come every OTHER week now! Woohoo!!! He is speaking well and trying harder. His teacher even said that one day, he was trying real hard to speak slower and articulate better. How wonderful! He loves going to speech, which is such a good thing to see! He even sees the TA in his classroom for some speech-related games, which he really enjoys too. (nice to know that he's not old enough to find it embarrassing yet! I remember having to get extra help for some subjects in grade 5. It just further made me feel like a weirdo. I knew I needed the help, but it didn't help socially, which I was already having troubles with. *sigh* such memories) She still finds it so Off The Mark that he would have Apraxia. She says he's just a bit delayed, and she is so confident that we won't need to see her this summer at all! Woo-ee!!!




(Anna tried to get a picture of Kai when she was over last weekend. The kids confiscated my camera…I didn't mind…until I found it broken. grr!!!! the buttons don't click to stay on or off. oh well, now I definitely need a new one!!!)




Kai has already decided that when he gets older, he is going to become a Police Officer. He wants to ride a motorcycle (or as Bryn calls them "sigh-coh sigh-cohs"!) and even fly a police helicopter! Very adventureous! We'll see if this dream continues as he grows!

He also announced one day to Anna that, "when I grow up I'm going to be a police officer and I'm going to marry you!" LOL! How absolutely adorable!!! Anna was horrified though! LOL If she's not interested, then there is always her little sister, Janaya, who is two years behind Kai and such a cutie!



(Anna riding on Kai's bike while he stands behind her on the training wheels!)

Kai is so wonderful! I love him dearly! He's getting So Big!!! A part of me isn't ready for it. I'm so unprepared. He's been so YOUNG for so long…so dependant with his speech and his attitude and confidence, but now he's growing. He's getting independant and brave. (he'll actually talk to strangers now!!!! …which is a good/bad thing! it's definitely better than ignoring or growling at them!!!) But I've lived with this for so long, it's hard to imagine it all fading away into the past. I'm not prepared! But I am happy. Relieved. At peace.

it started out good, turned bad, then went back to good again

Last week, I was wide awake at 6:45 am. (it helped that Kai came in for some breakfast. I told him to wait until morning!) To be honest, I was expecting Hunny to stay home sick, since it didn't sound like he slep well, but he's a Stronger Man than I am (for obvious DNA reasons) I would've whined about how siiiick I am and stayed in bed. But not him. He put on his Big Girl Panties (not really, that would be disturbing) and went to work, saying he used up too many sick days already. (I don't even get Sick Days, so I can be as sick as I want as often as I want. yay!) But I digress…

I got up, helped the kids get dressed (well, Bryn & Abi) and eat. I was so proud of myself for being so awake! Yay go me! This was going to be a Good Day! As soon as Hunny left with Abi to take her to school, I decided to curl up with Baby Honey in bed, since he wasn't awake yet. I knew I'd have to leave by 9:30, but I was just resting.

…An hour half later…. I jump up and freak out, rushing Kai to dress, and change Bryn and Rhys, gather all I need, and head out the door. I obviously fell asleep and now it was 9:47am!!!! Dang!

Oh no! *smacking forehead* I didn't consider the snow last night! Not only did I have to brush off about 2" of the white stuff from my van, plus the layer of ice underneath, but I had to get INTO it first. My doors froze! And my Emergency break froze. And my windsheild wipers froze. Oh, and then there was a good 5 minutes where Bryn thought it would be funny to lock me out of the van while it heated up. I implored, urged, demanded to him to unlock the doors. I banged on the windows. I begged and commanded Kai to open the doors. I even cursed bad words in my head…until God gently reminded me that He knows our thoughts and even if it's "only in the head" it's still as if I committed the act, so I had to confess and ask forgiveness. *sigh*

Finally, Kai gets a clue, opens the door for me, and I can scrape my windows. Thankfully, my van has been heating up enough for the windsheild to thaw partially. I didn't pull out of the driveway until 10:05am. Oh, did I tell you that the appointment was at 10:10? We were 20 minutes late. Did I mention that this was our first meeting with our new Speech Pathologist? Phooey. Our 1/2 hour meeting was now only 10 minutes. And as I set Rhys' car seat down and Bryn plops into a chair, I am informed, "Oh, and I don't allow siblings in the room."

Good to know. Now. Thanks. Not that I didn't think that Kai shouldn't go alone, but I really would've like to have been a part of our first meeting. Since we'll be seeing her weekly, I'll try to make arangements for the younger boys.

But on to the part where it gets good again….

The SP (Dara….although Bryn thought I said DORA, as in The Explorer, and kept asking when we'd see her!!!) said that Kai speaks pretty good and that she feels that we just need to work on the "S Blends" (which I knew). She also said that she didn't think that we'd need to see her for very long. I asked her how she felt about the Apraxia diagnosis, to which she said that she didn't feel he had it at all!!! Isn't that wonderful? She said it is the most misdiagnosed speech issue, and it gets parents all worried since there is no cure for it. (that's true!) I forget the term she used for what she thinks he has, but it was something "normal"! What a relief for me! I was worred over the whole Apraxia thing and how would he ever fit in and what would we do, etc. But underneath, I wondered about it as well. Did he REALLY have it? He seemed to be speaking better, and his vocabulary was getting stronger. (he now calls it "guitar" instead of "buh-tar") Was there really times where he couldn't get past the hurdles of Apraxia? I guess I also wondered if it was a proper diagnosis too, for I have no idea why I even asked! So this is good to hear. Of course, this isn't for sure, Dara only saw him for 10 minutes, but I already felt better!

I like this woman. She's very professional, and likeable, and I am looking forwards to working with her. We see her again this week. It costs us $65/half hour….but I was Very happy to hear that Hunny's medical coverage at work wil pay for $40 of it. Yay!

Yum! eating and reading

I've been working on the whole feeding business with Rhys for a while now and tonight it seemed as though he actually GOT IT! He's been licking his lips and smacking his gums, so he gets the idea, but he hasn't connected the movement with actual food, silly boy. Tonight, I gave him his pablum cereal mixed with his formula and added some pureed peaches, and boy, did he like it!!! He was actually pulling my hand over with the spoon in it to get some more, which delighted me. And he ate quite a bit too, which is nice to see since before he'd only take about 5 bites and think he was done. Tonight, I didn't need to "follow up" with a bottle. YAY!

Here are pictures of him when we first started him on pablum. He's in his own special "feeding chair". It's made by FisherPrice and it comes with three tops: one for playing, a white one with sectionals for feeding that goes on top, and the cover. My SIL used this for her DD when they went out and it worked great! What a well-behaved child, for one, but I loved that seat! So, we got one for Christmas from MIL. Yay! I've got Rhys into it for eating. I suppose I could pull out the highchair, but this works for now. Besides, I'm sure he'd just slide right out of that high chair, lol!



Still so cute, even with pablum up his nose!



"what is this? do I like this?"



"what is this for?"



"give me the REAL food!"

(oh BTW> he has moved up to 4oz bottles, but I still like his 2oz for convenience and for something quick when I know he's not really hungry. And they're cute and I get sooo many comments on them when I pull them out!)

Rhys is now 7 months old and he still hasn't sat up on his own yet, nor will he roll over for me. *roll eyes* He's so close though! He LOVES to sit up in my lap or on the floor between my legs, but once I let go, he's on the floor in a faceplant within less than a second. Not very nice for a baby. They don't like that. And no matter how many times I put him on his tummy or his back, he won't roll over. My neighbour claims that he's doing that all over the place at her house when she's watched him, but he has yet to prove it to me! :P We were supposed to have Mishelle from IDP over again this week, but we got more snow so she cancelled. (It wasn't a heck of a lot of snow, thankfully, so I don't know why she couldn't come, but whatever) I'd like to see where he sits against other children his age. I know not to expect a lot, since technically he still is 5 weeks behind everyone, but I still like the Ages & Stages Questionairre.

Here's one of my favourite pictures of my oldest and my youngest. Abi is reading to Rhys, who doesn't get it but loves the attention anyways!





Abi has become such a great reader. She is in chapter books and will go through one within an hour! It's impressive. So much so that sometimes I wonder if she is actually reading them or skimming them!!! She loves to read, and that makes me happy. Last weekend, we took the kids to the library and they all got their own Public Library cards! They were so excited! (well, all except Rhys. He'd just eat the books. Can't have that. Libraries overcharge you for damaged books, it would've been easier to just have bought it yourself from the bookstore then ate it!!! LOL) Abi took out 5 books the first day and finished them all within 2 days!

Kai is still working on his reading. He takes home easy readers from Kindergarten with Sight Words every week. I remember those from when Abi was in that class! Kai is doing incredibly well too, which is such a surprise and joy for us! I know it's all memorization because he can't tell one word from another, but that's the start of reading. I can read the book to him twice and he will know it all by heart! It's amazing! I hope he can continue his love of books and that his speech doesn't slow him down. (I can see some troubles with his one book that he brought home this week. It uses a lot of S words…like SLOW, SNOW, SLED..the two-letter consonant blends that he has problems with.)

My kids are amazing! *big grin*

speech again

Kai was seen by a Speech Pathologist at the school this past week. I was invited and encouraged to join the meeting, which I fully planned to, but I lost my day planner (again, good grief!*roll eyes*) and I forgot which week it was and they told me the wrong day at the school, and yeah, when it came up, I didn't have anyone to watch the younger boys. Phooey. Anyways…. I popped in the next day to talk to the Learning Assistance coordinator and all she had time to tell me was that the Pathologist was "very concerned" for Kai. Not only with his delay, but there was some concern about his heart condition as well, as it was noticed that he was breathing with his whole body and not being able to speak much before he needed to take another breath. The worry was that maybe he just wasn't getting enough oxygen to his brain and that would impede learning skills. They were worried that he may end up with learning disabilities.

With that little information to go on, I had to wait another two days to talk with Alison again. Of course, I totally forgot that when I told her I'd see her on Friday morning after dropping the kids off at their classes, I wouldn't be at the school anyways as Jonathan now drives the kids to school for me. But I made it in to see her before classes got out, since I remembered that she couldn't see me right after school. Good thing she was able to meet with me; I didn't call ahead and so when I arrived, she was in the middle of meeting with another student. Oops. But it all worked out.

I ended up with no more new information then what she mentioned briefly on the Wednesday. I gave her my very full and big file folder I have on Kai and all of his tests, programs, doctor apointments, etc that he's been through so that maybe she can get more caught up on him. I was annoyed on Wednesday when she was surprised to hear that Kai had actually been diagnosed with Apraxia! I guess somehow that news didn't get to her, even though it's mentioned in his school files and I've told his teacher. *roll eyes* I did explain to her that his heart condition is stabilized and although it may cause some issues with his breathing, he does also have asthma and that no one else had noticed him breathing heavily before, so possibly it was just a rare thing. (hoping)

We won't get the Pathologist' report for another few weeks, but what she recommends is that we put Kai into private speech therapy along with his training at school. Phooey. I'm not surprised really since this is something that needs to be worked on a daily basis with, but I was so hoping that the school would be able to do enough for him. *sigh*

I guess I don't really feel Too Badly about this. I mean, it's too bad that we have to do this. {Private therapy can cost a lot, I've heard, but we do have good health coverage with Jonathan's work. We'll see how that works out.} I just hate that my son has so many health issues: cardiomyopathy, asthma, apraxia. He seems so "Normal", at the risk of using a bad word, so it's hard for me to understand and remember his frailty. I don't want him to be left behind…the possibility of the teacher thinking he's not ready for Grade One and having to hold him back in Kindergarten for another year hangs over my head. Yes, I would agree with her if that's what she thought; after all, Mrs. VB has been a K teacher for over 30 years! And, yes, if he had to repeat a grade, this is the best one and the best time. And yes, he may not even really notice and would make new friends and all would be good. But still… so sad. I hate the idea that he's BEHIND or that he needs extra help. You know?

I'm suddenly feeling like I've got nothing to complain or worry about. Really, Kai doesn't have it THAT bad. There is a boy in his class who has, I think what it's called is High Functioning Autism. He is the thought that pops into your head when you think of the term: flailing arms, random screaming, body throwing, hitting… It breaks my heart because this boy has such a warming smile and seems like such a sweetheart. But what his mother must go through. I worry about my Kai repeating Kindergarten, when his mother likely worries if her boy will even make friends or play with the other children.

I'll be looking into Speech Therapy this week. I hope I can find him in something soon. Until then, he will begin a special program designed to help strengthen his mouth muscles with horns and straws.

Speech Update

I talked briefly to Kai's K teacher who said that he was assessed by the Special Ed teacher (I think? Or was it a Speech Therapist? I can't recall right now, but I will soon and I'll fill you in again!) and I am happy to report that they do not see a problem with Kai's speech and have no problem leaving him as he is and re-assessing him in January!!!!

HOORAY!

Of course, a part of me was wondering if maybe I needed to fight for this or something. Remind them that he's been diagnosed with Apraxia. Be his Advocate. After all, I am his mother and I need to fight for him. I've heard so many stories of mothers who've had to fight and advocate on their child's behalf to get the diagnosis or therapy or help or doctor or whatever that was needed or else they'd be put aside (some mothers I know as friends)…. and I wonder if that's something I need to do. But then I look at Kai and I listen and I talk to other parents and I am happy to admit and share with you that he IS doing well. People DO understand him. He IS talking good for a kindergartener. I am so happy and so proud of him! My child, who did not utter two-word sentances until he was 3 1/2! Only a year ago did he start to actually TALK!!!! He has grown in LEAPS & BOUNDS!!!!

I"m not too sure where that leaves his Apraxia diagnosis or his ST though. I think I'll have to talk with the teacher more about this at our parent/teacher conferences in two weeks, and then talk to his old Therapist. But isn't this just Wonderful? Who'da thought?

He makes me smile. I'm proud of him. He… it blows me away!

….now, if only we can get his pooping down. He still won't use the toilet. H'mm…at least he hasn't had any problems at school. He only peed his pants once, but that was when they were on a field trip walk through a park, so I understood. We'll get there…

Exciting news

Kai's ST Linda has been testing him to see where he is at with language and such, and today's was about comprehension. It started out easy and I was wondering what she would accomplish with asking him to point out the dog from a series of 4 pictures of animals, but as the pages went on, the questions got a bit harder. Such as "studying" or "vest" or "trunk" (of a tree). I was SO proud of him! He did great!

I was talking to Linda about it later and she said that according to his results (which she tallied since Kai no longer wanted to participate, so he kept running off to hide behind the couch!) that his comprehension is at the age level of a FIVE and a HALF year old!!!! I was so surprised!!! That totally made my day!!! I told her that I've been going back and forth on deciding if he should go to Kindergarten in September or not. He'll turn five in November, so he's old enough, but we weren't too sure if he'd be behind the rest of the children or not. If we held him back a year, he'd be sure to be ahead of the kids, and be at an advantage. But obviously I am wondering and doubting that idea since I can't seem to come to a confident answer! Linda encouraged me by saying that she thinks that he'd do fine and his knowledge level is at the right spot; he's a smart boy, he's just delayed in speech. (and potty training, sigh, grr) *I* think he's ready……but is he??? He's got the energy of a kindergartener!!! LOL He's "ready" for it in that sense. But is he???

The idea of sending him to Pre-School for a Third Year seems so sad. Like we're holding him back. When all the other children moved up to Pre-K, he stayed behind, and that's what it feels like we're doing.

So I think I need to talk to his preschool teacher and see what her advice and thoughts are, and talk to a Kindergarten teacher at the school for what we should look for and such. I know that he's behind on potty training, speech (obviously…but even his speech has GROWN! I mean, he is doing so well it's Phenominal!!!) and in his writing. He can't write his name or straight-ish lines well. So we'll need to work on that. But other than that….he knows his A B C D's and can count to 15. Yay! He's actually been trying to read this week too! He'll take a book out that he knows and "read" the story to himself (I can hear him in his room at night). Yesterday, he tried to read this one story of a bunny that he remembered. He didn't get many words correct, but he got the jist of the story across! I'm so proud of him! It's funny (and sad) that as a parent you worry and wonder about the capabilities of your own child. But isn't it amazing when they blow you away with their accomplishments?

I'm so excited about this prospect! I love seeing Kai grow and pass hurdles!

We saw the Cardiologist on the 11th for his bi-annual check-up, complete with ECG and Echocardiogram. The apt was at 12:30, and we get his tests done soon after we arrived at Children's Hospital. I'm so pleased with how Kai sits so still for these test now. I remember how when we first started to go (when he was 1 1/2yrs old….so long ago!) and he would wiggle and scream and cry and it was stressful for all of us! How he's grown! He's now 97cm (apx 3' 2") and 13.1kg (29lbs)…so he's gotten taller…but he hasn't gained any weight in 6ms. I'm sure Bryn is heavier than Kai is…at least he feels it!!! :S The cardiologist has taken note of the lack of weight gain, but since Kai is eating well and seems to be doing well, he wasn't going to worry about it yet. After all, he is NOW Finally ON the growth chart! (well, in the 5th percentile….still tiny…but so is Abi! She's the second shortest in her class; she informed me rather hotly that she is taller than the Thai girl in her class, lol!)


According to the tests, nothing has changed. He is growing and so is his heart, so it's still enlarged. But the good news is that it isn't getting worse.


Since he is at a good size now, the doctor wants to do a biopsy in the Spring on a piece of his heart muscle. This won't be surgery, but will only require catheterization…which is still slightly worrying. There is only 20% of having a positive answer as to what is causing this or anything, but it WILL let him be able to eliminate some issues of what it ISN"T. The doctor will call us in the Spring to set up a date.


So all around, things are going well for Kai. He delights me!

why? why? why?

ARGH!!! I think Kai is going through his "terrible twos" right now! He has got quite the attitude when it comes to not getting his way (but then again, who doesn't get upset about that?) and he is CONSTANTLY asking me "why?" to EVERYTHING!!!! I was going Bonkers on the car ride home after dropping Abi off at school this morning!!! "Why is that car going to the gas station?" "He probably needs gas." "Why?" "Because cars need gas to drive." "Why?" "That's how they're made." "Why?" "They won't run without gas." "Why?"

Wow-ee!!! We managed to made it through that stage pretty easy with Abi; she didn't ask that TOO much (unless my preggo brain forgets, which is very possible), and I thought we did wonderful with missing it since Kai's speech was so delayed! *sigh* It's so nice to hear him speak clearly and so often, but I tell ya, his constant chatter and questions are tiring after a while! Is it bad of me to admit sometimes (okay, most of the time! *blush*) I tune him out and just agree with him when he says, "right, Mom?" LOL

Meanwhile, on the Speech Front…Kai is only going to ST once a week now since he has gained so much in the past 4 months. It's been Amazing! I'm happy too b/c it's less driving and stress for me! Linda did a mini assessment on him again when we returned last week for ST and she has noticed that we need to work on syllables (he pronounces many words as one, just as Bana, instead of Banana) and on his vowels (which is funny since that is all he used before!) and the second consonant in words. She got him to say "L" properly last week, which he was doing well. It's encouraging to see how much he has grown. I had to fill out the usual yearly forms again though, sign the papers of disclosure and such, and tell them my "goal" for Kai. Uhm… that he speaks??? I never know what to put for that. It seems like such a no-brainer! What would you like to see for your child? Uhm, that we don't need to come here anymore b/c he's doing so well??? That he can speak at a level that everyone understands him??? That we can send him to school confident that he is on par with the other kids???

Bryn saw Michelle from IDP (infant development program) yesterday again for his 18 month ASQ. He did Awesome! I was so excited! He is ahead or on target for everything…..except his speech. :( We were discussing his speech back in Nov 07 and it was suggested that we get him referred for Speech Therapy. Just in case. So yesterday, Michelle asks me, "Do you feel that he is at par with other children his age for speech?" I thought then said yes, to which she looks over the Qustionaire and tells me that Bryn is at the "at risk" level. :( Guess I'll be filling out that referral and returning it to Linda afterall. It feels like the whole thing with Kai again…where we were so hoping he'd "out grow" his speech delayment, and wanting to postpone therapy. We're at the same thoughts with Bryn. We hope he'll do fine, but what if he doesn't? What if he also gets diagnosed? I'm not suggesting that would be horrible, I'm just debating on the whole "do we wait?" thought. I know that we can take him OFF the list if his speech takes off, but it's the whole admitting that you have to put him ON it in the first place!

No matter what, my boys are wonderful! I am so proud of them and love to see how they are growing, and the things they can do! They sure do keep me on my toes!

new words and adjusting

Kai has said new words over this past weekend that just made me SOOOO happy. He said, "I Luff You." AWWWWW! isn't that wonderful? :) He said it to Daddy, then to Abi, while we were in the van driving. I was waiting for him to say it to me, but he didn't. *sniff* I'm being patient though. This morning, he told me, "I WIKE you, Mommy." AWWWW! Just as cute! I'll accept it! :) He also said, "Grampa" for the first time. He wanted to go sit with my Dad at dinner on Saturday night. Until then, he had only called him "Ga-ga", so that was big. Then yesterday, he actually said his name!!! WOW!!! He had only spelled his name without actually naming himself, so I was so pleased! He is growing in vocabulary so fast! It's exciting. His ST says it's his speech delayment, which is what he ALSO has on top of his Apraxia! (I didn't know that) I love hearing him speak. It makes me smile.

I'm adjusting to the whole Apraxia thing. I was given a few handouts from Linda last week on it that really helped. It helped me learn some things and be able to understand more of it. Apraxia is only NOW being recognized as an actual real "disorder". (if that's the right word), so there isn't a lot of information out there. These papers, written by Penelope K. Hall, were talking about the aspects of it, understanding it, and how this is a lifetime thing, something Kai will have to learn to deal with. He may also have struggles with written word and spelling and reading, as well as math. :( (oh well, so did I!!!… well, aside from spelling and reading!)

What really got me was where it said how we'll have a team" to discuss and learn from. This team will be with him throughout his schooling. "Many children who exhibit DAS (developmental apraxia of speech) receive special academic support through their schools. In these cases, the school speech-language pathologist, along with the classroom teacher and other educational specialists, will become members of your child's educational planning team." ("Part III: Other Problems Often Associated With the Disorder" by Penelope K. Hall. The University of Iowa, Iowa City. April 2000 ~ I"m not likely citing the bibliography properly, but bear with me, it's been many many years since I've had to cite info and write papers! And this was a photocopy!) This paragraph really stood out for me and got me to think about this whole disorder. It actually makes me a bit sad. :( It's also made it more REAL to me. This suddenly appears to be more "special needs", and that's frightening. What kind of help are we looking at here for school? Are we talking about a regular learning assistance alongside him in class? Or him leaving the classroom for several hours a day for remedial help? *sigh* I know, I know. I'm looking way too far into the future with these worries. I do't mean to be, but I like to know what to expect.

Linda gave me a website for parents, family and therapists of apraxia, which I'll be looking into and getting to know other parents to talk with. I'm looking forwards to learning more. But more excited to watch Kai pass my own expectations and limitations!

Kai's last speech

Kai had his last speech therapy for the summer today. And after our first horrendous appointment to our last one 6 weeks later, I can say that Kai is doing much better! He participated well and tryied to sign more and even tried to say things. I was so proud of him! He played games with Linda and even gave her a hug when we left. It turned out better than I was expecting, and I am so happy and relieved.

I remembered to ask about the benefits Linda had mentioned last month, and she photocopied forms for me and filled out her portions. This is the "Child Disability Benefit" through the Canadian government and is a tax-free benefit "up to $137.75 per month ($1,653 per year) for low-and-modest-income families who are for a child under age 18 with a severe and prolonged mental or physical impairment." I don't know if we will qualify for it or not, but it's worth a shot. The nice thing about this is that it will be retroactive all the way to birth, too! Woot!!!

Linda wrote under the Examples of effects of impairment as this: "unable to get basic needs met as can not express himself; saftely as a concern as can not express what's happened, give information, as well as does not always follow directions. Highly unintelligible verbally–uses some augmentive." As for Diagnosis, she wrote: "Childhood Apraxia of Speech/Phonological Disorder/Expressive Language Disorder".

She went over it with me and I agree with all she wrote, but she wanted me to understand that while she does not completely think of it as a "disorder" as much of a "delay", but the term sounds better! She did use the term "Apraxia" again today at the end of our session (before I asked about the forms), which makes me wonder if it's Official or if it Still "can't be ruled out". She said she was going to try more of the things she learned at the Apraxia conference on Kai starting in September when we see her again, but did mention how it's a bit hard as he's younger than the age she's studied.

I'm feeling good about this and not at all sorrowful. I'm taking it one step at a time. We'll know more when we see Linda again in September.

Kai said something!

Last week, Kai actually responded to the Speech Therapist!!! YAY!!! I was soooooo happy and all day kept praising him! I wanted him to realize and understand that was what we wanted from him. Before the appointment, I kept telling him how he needed to say something or sign or do something for Linda so she knew how big and smart he was, and when we got there, before getting out of the truck I turned to Kai and repeated that he needed to respond to her, and would he do that for Mommy? Of course, he says yes! He was happy to be there and played good with the toys in the waiting room and was doing well…. until Linda arrived. Then he hide beside my leg and got a pouty lip and eyes downcast. :( Oh no!

We went to the room, where he sat at the table not looking at her. But she was prepared. She had a box of toys on the table and pictures in front of him. He just needed to point to which one he wanted to play with! At first he didn't want to until I gently said, "what did we talk about in the car?" and he pointed!!! :) And as they played, he gradually got more comfortable and pointed and even started to speak! It was so wonderful! I was wondering if we'd ever get to that stage with Linda! My heart was overjoyed!

Kai's interest didn't last long though, but he did play with all the games and did respond, so all was good. Linda said she still can't rule out apraxia but she says that it seems to be more of a delay in phonetics. He has words that he uses for certain things that HE thinks are correct and it's just about learning that those aren't the correct ones and having to replace them with OUR words. It'll take some time.

Kai is growing in leaps and bounds! I am so impressed and pleased. Jonathan & I praise him whenever he uses words and tries but what is really helping him is playing with other children his age. He's gained so much with just playing with Max & Teague next door and last weekend with Brody, which is so great to know. I can't wait to see how he does at preschool this year!

We'll see how this week goes with ST.