unexpected outcome and our first IEP

I met with the Learning Assistance Coordinator at the school and she had bad news for us. Unfortunately the assessment report from Fraser Developmental Centre wasn't enough. First, they didn't receive it in time to apply for school support (which needs to be done by the end  of September to  register with the Ministry of Education) and the short report they got didn't have enough info on it. Second, upon receiving the full report, the LAC and SEC (Special Education Coordinator) went over it carefully and they aren't able to apply for extra help for him when it comes time in February 2016 either (the second time schools can apply).

So no Aide for Rhys.

At least for now.

The wording that I struggled with they did as well. ("You may wish to identify him as having....") The big issue they had with the diagnosis of Complex Developmental Behavioral Disorder (CDBC) is that Rhys doesn't completely fit that description either. He does not have any behavioral problems. That is, no aggression, or self harm, or class disruptions ,etc. And that Behavior is an important part of CDBC. So they didn't feel that they could properly label him that way. Even though as I was told they really wished they could.

*sigh*

To say I felt disappointed would just slightly address my feelings. I felt it was a step back after our gains lately. And I was worried about Rhys not getting the help that he needed. But I have been assurred by the LAC that while Rhys may not have an Aide, he will always have an  IEP. And they will always have him placed in a classroom where there is already an Aide, who is able to help him as needed. That encouraged me.

Despite that set back, I do not feel that Rhys will "fall into the cracks" like it felt last year.  He has such a wonderful teacher (who R and I both love) and the same Aide in the class as last year (who I've been talking with) He also has this report from Sunnyhill and they can't ignore that. But the truth is that Rhys really is doing well. Yes, he is about 1-2 years behind in a lot of ways, but he just needs direction, and he doesn't need that all of the time. So I understand the confliction in this decision.

When I met with the Learning Assistance Coordinator and his teacher last week for our first IEP meeting (Independant Education Plan) I had a bit of nerves. I wasn't too sure what to expect. And it's funny how despite not knowing for sure, you can always end up feeling as though you weren't really expecting the outcome in the end. The meeting was different than I thought it would be. We started with his strengths (which I think is always a good place to begin) and then his needs, and then delved into the many categories where he needed help. With each heading (Communication, Social/Emotional, Acedemic, Physical/Independance) we discussed areas that he needed to strengthen and the LAC gave us solutions on how to meet those concerns. It really wasn't a surprise, really. Nothing was said that I didn't already know, and thankfully most I had already discussed with the Learning Assisstance Coordinator so it felt more like an 'official recap' for the records. So un-climatic!

I am going to see Rhys' pediatrician and see if he would qualify for more help elsewhere, as we agree that Speech Therapy and/or Occupational Therapy would benefit him. As his teacher said, learning disabilities don't separate kids too much, but something they see will eventually set him apart, such as his inability to run properly or do simple things like skip. Maybe there is a program that we can get Rhys into that's locally run and doesn't cost a lot.

I really do think this year will be a good one, though. We are making small steps. He is in the right school, and placed in the perfect classroom, and he is loved by many.

Thankful Thursday

Welcome back to Thankful Thursday, a feature started by Louise at Talk Nerdy to Me, where we look back over our week and remember our blessings.  It is so good to see all that has happened, especially if you have had a particularly tough week. Being grateful is good for the soul. Here are just a few things that I am thankful for...

1 .Fun Mail

I got such a wonderful surprise in the mail this week from a friend in Scotland. She had posted on FB that there was a Doric version of the book Gruffalo, which is a dialect where she lives. I thought that was pretty cool and asked her to record herself reading it. She offered to send me a copy instead. And she did! I wasn't really expecting her to. I was so happy!

 I could read the book in my head, but reading it out loud was a bit more difficult! The kids listened, but they got confused. (not surprising)

("a mouse took a walk in the wood. A fox saw the mouse and the mouse looked good.")

  Abi and I had fun reading it, although she sounded more like a pirate to me! HAHA

2. rebate cheques

I got a letter from ICBC this week (the Insurance Corporation of BC, the company that you have to insure your vehicle with to be able to drive it legally here.) that they had been overcharging me (oops. dang corporation) I am thankful for the cheque they sent though. It is enough for us to be able to rent the uniform Abi needs for her choir performances.

3.International Festival

The grade ones have been studying different countries this unit and have come together to do a few fun events. They had a few soccer matches (or, rather, Football in most of these countries) and ended with an International Feast, where each class hosted foods from their country. Rhys' class studied France, so some parents brought in crepes, croissants and quiche---which was impressive because my mind went blank and all I could think of was French Fries, haha!  The other countries represented were Netherlands, Guatemala, and Italy. 

It was a fun afternoon!

4. acceptance
  
I think just about everyone knows by now that Rhys is a huggy boy. He loves to give random hugs to people and he will love and hang on you if he knows you. I think it's great about him as it shows his genuine love for others. But I know that people we don't know may not enjoy it as much. Such as classmates of Abi's. But Rhys still runs up to them and hugs them and wants to hang around them!  

I am so thankful that Abi's classmates are okay with that. They not only endure his clinging, but they are so kind that they even encourage him. It warms my heart to see that they don't look down on him, but accept him. I had to pull him off one girl as we were leaving school the other day because he kept hugging her leg! She laughed it off thankfully.

5. balloons!

We got confirmation this week that my niece is now allowed to have latex without having an anaphalactic episode!  Woohoo!! After 8 years, she can now play with balloons!!!  This is such an amazing gift! We all kind of take it for granted that we can play with balloons at parties or not have to worry about what the rubber balls in school are made out of or avoid certain foods that cross relate.  I can't wait to be able to give her a balloon!

6.  visits with old friends

And when I say "old", I mean Dear...not OLD! haha.

Shannon and I have been friends ever since we worked together 14 years ago. (gosh, now I feel old!) For a while there we would get together monthly, but she started to full-time work as a nurse and life got busy for me and we weren't able to anymore. After a few cancellations, we finally met this week for tea and a visit. My heart is happy again. (having hugs from her daughters, saying they missed me, helped too!)

 7.  friends 

If you were to ask Eden who her best friend is, she'd probably say Joey, our next door neighbour. We are so blessed to have this family beside us. But with night coming earlier now and so many after school events, they haven't been able to play as much; they look forward to the weekend!

8. gaming night

For Kai's birthday party, he invited his friends over for a gaming night. We got him a PS3, and we borrowed an old-school Nintendo and an extra tv, and a friend brought over his Ninetendo 360, so they had plenty to do! We fed them and they played games and had a lot of fun. I had to laugh though that by the end of the night, they were all on the couch with their own devices playing Minecraft together!  It was a fun evening! (and cheap!)

(this is the picture we used for his invitations!)

9. extra long weekends

My kids are out of school for two days this week, giving them an extra-long weekend! I love that! As much as I love their school and I love that they can go, I also love those special days where we can relax and sleep in and stay in our pjs!

10. Colourful Garden Carrots

I am so thankful that we had a bit of a garden this summer that yeilded a lot more beets than expected, as well as beans and these carrots. I love all the fun colours! (I think they were called Rainbow variety, but I could really be totally wrong. I don't pay good attention to these sorts of things)

 So that's my week in a nutshell. How about you? What are you thankful for? 

Another Specialist, Another Group

Her first question after we introduced ourselves was, "How important is it for you to have a diagnosis? How much do you need to have one for him?"

It caused me to stop and consider. What is the right answer she's looking for? What do I really feel? How do I even express it? I answer truthfully. "If searching for answers isn't going to get us anywhere then we don't want to do it. We don't want to waste your time, or our time, and we don't want to put Rhys through more trauma. We just want to know if he has something so that we can help him out in school or when he's older."

The doctor nodded encouragement. She seemed to understand what I was trying to say.

Our goal is to see how we can support Rhys and bridge that delayment gap. But if Specialists don't think there is any reason to continue searching then I guess we'd have to be happy with all that we know now. The Developmental Pediatrician we saw at the Fraser Developmental Clinic said that we had done a good job with getting answers for Rhys and that we had exhausted a lot of routes, and that we shouldn't feel that we needed to look further. I think that she meant to be encouraging but we didn't cancel our appointment with the Specialist at TIDE BC.

TIDE BC is the research team based out of BC Children's Hospital that our regular pediatrician referred us to. (mentioned HERE) I was excited to see them; it sounded promising. They focus on treating and preventing Intellectual Disabilities (ID) through diet and/or drugs. They work alongside the Genetics department at BCCH as well. I couldn't help but feel somewhat hopeful that they'd be able to help us out. Even though I knew that the chances of them even finding anything wasn't high. But hope is an amazing thing.

We hadn't heard from Genetics yet, at the time of this appointment, but I admitted that it must mean that there was nothing to mention. We aren't upset about that. There's no need to bring us in on nothing, plus it saves us an hour drive in to BCCH, paying for parking, finding childcare, and the drive back home. We can appreciate that.  The Specialist at TIDE BC had most of our test results in her file and she confirmed that they were were 'negative' or 'normal'. (no surprise)

Our appointment was short. I was advised by a friend who'd been to TIDE already, as well as the printed handout the clinical nurse gave me, that we'd have questions to answer (mostly background info---stuff we answer at every doctor's appointment, which is frustrating.), they'd do a check on Rhys and we'd be send for a bunch of lab work. (yay) However, it didn't end up that way. Instead, the doctor recognized that we had done so many genetic tests already and that there wasn't much else for them to do. Instead, after a brief look over Rhys, she asked if she could refer us to another group. They are called CAUSES, another clinic based out of BCCH.

This group is still in it's testing phase, but showing lost of promise and answers. They work with Genetics as well, but the biggest and best part of them is that instead of doing multiple tests (which we already have done a boatload), they do only one. Yep. One giant DNA test. Bam! That's it! So no more going back and doing "one more test" and no doctor saying, 'maybe we can look for this..." How awesome is that? It's a huge test and answers our feelings towards wasting anyone's time and/or putting Rhys through more poking and trauma (he already is a huge handful to get labwork done as it is)

I found this about CAUSES on the Genome British Columbia site:

About the CAUSES Clinic
The CAUSES Clinic will provide advanced DNA testing, clinical interpretation, genetic counselling, and personalized recommendations for treatment for children with complex, undiagnosed medical
conditions. There are more than 7,000 known genetic disorders, and the CAUSES Clinic will test for all of these using one genomic test. If advanced DNA testing identifies a child with a treatable condition, then treatment can be started earlier. For some children, this will be life-changing. Obtaining the right treatment earlier will help prevent medical complications and save lives. The CAUSES Clinic is made possible by a $3-million commitment from Mining for Miracles through BC Children’s Hospital Foundation and is supported by the Provincial Health Services Authority and the University of British Columbia. The CAUSES Clinic will ensure that BC Children’s Hospital remains a centre of excellence providing outstanding care to the children and families of British Columbia.

The CAUSES Clinic will:

• Test at least 500 children and family members within the next three years to identify illnesses that would previously have gone undiagnosed;
• Provide genetic counselling, interpretation of complex testing results, and personalized treatment recommendations for children who receive a diagnosis from the Clinic’s advanced DNA testing;

• Help reduce the number of invasive tests – such as biopsies, biochemical tests, expensive single gene tests, or MRI scans often requiring sedation– needed to obtain a diagnosis for children. This is expected to reduce the average number of tests per child required for a diagnosis from 10 or more to one, resulting in significant savings for both families and the health-care system;

• Help prevent medical complications. In cases where advanced DNA testing identifies a treatable condition in a child, then treatment can be started immediately. Obtaining the right treatment earlier will help prevent medical complications and save lives;

• Partner with BC Children’s Hospital BioBank to store biological samples donated by patients, which will contribute to significant research discoveries.

The doctor told us that this testing has a 30% rate of discovery.  Which is encouraging to hear. That's a lot of families who have gotten answers. But that does mean that 70% of patients don't have anything in the end. She needed us to understand that the results may not yield anything. But I said that even a "normal" is an answer. Isn't it? Having no genetic problems is actually an important piece of our search to know. It'll be definitive, at least.

CAUSES has a fast response time too. Apparently they take only about 2-3 weeks to decide (as a group with all the Specialists) if you are a good candidate for their program. So maybe we'll hear soon if this is something we'll be searching further. If the decide to look into Rhys' case, apparently they'll contact our Specialist at TIDE, who will then contact the Genetics Counsellor, who will then contact us to set up an appointment date. It's all so run-around-ish, but I was told it also happens sooner than typical.

The funny thing is that a few days after our appointment at TIDE BC, we got a call from the Genetics department. The doctor didn't find anything in his tests, but he'd like to recommend us to a different group for further testing!  When I talked to the Doctor's Assistant (I'm not actually too sure who she was, to be honest), I told her about TIDE and CAUSES and she said that was the group that our doctor wanted to send us to! How interesting!  I asked what the criteria was for this---what about Rhys was it that made him want to go further? She said that the doctor feels that even though the tests are coming back normal or fine that there may be something else going on with him. So it wasn't necessarily that Rhys was a "special case", but that he's worth looking further into. That was actually good for me to hear. (It's not all in my head!)  There's something there, but what? We're short of answers, but maybe there are still options.

What we've been waiting over a year for: R's Assessment

It has been almost two months since we had Rhys assessed at Sunnyhill. Or rather, it was done at the Fraser Developmental Clinic in New Wesminster. When we were sent there I was unclear if FDC was a part of Sunnyhill or contracted out and if we went there due to a shorter drive distance or due to S being so busy. But whatever the reason, I was very pleased with our experience. The Fraser Developmental Clinic has a very professional and caring staff of specialists (plus a friendly and fun receptionist). We were there for 8 sessions over a 5 day period. Most were interviews with Hunny and myself, some were just with Rhys, which was hard at first. To not be in the room with him, that is. Other than school (or a birthday party or Sunday school), I have always been with him, being his voice and advocate. And here, he had to see a few doctors without me in the room. It took me a bit to get used to. Handing your child off to people you don't know, whether they are professionals or not, takes a lot of trust.

At the end of our sessions, we met with all of the Specialists for a conference to discuss the results. (minus Rhys) We met with the Developmental Pediatrician, Psychologist, Speech-Language Pathologist, Clinical Social Worker, Occupational Therapist, and a Case Manager. I was so nervous! What if they said nothing was wrong? What if they mentioned something that I hadn't thought of or mentally prepared myself for? Would I cry? (I thought I would, so I brought tissues in my pocket, just in case!)

The conference was, to be honest, quite anti-climatic. They didn't say anything that we didn't know or observe on our own. But they give us a few names.
-Verbal Learning Disability
-Written Output Learning Disability
-Math Learning Disability
-Reading Learning Disability
-Communication Disorder (more info on that HERE)

That's a lot of Disabilities and Disorders. Which is sad.

 First off, they started by reminding us of what a sweet boy he is (we know!) and how friendly and caring he is, and what a fun gentle spirit he has. (we agree!) The Psychologist talked the most, but she, and the Speech Pathologist and Occupational Therapist gave the most info. But really they were all so helpful. The diagnosis they were able to give us were "verbal learning disability" (he has never been good with verbal and has a poor memory, and learns better visually) and "communication/language disorder." So no surprise there. They did not say that we needed to get him therapy somewhere (although, if it worked for our family, they'd suggest ST) but they were going to "Strongly Recommend school support" to our principal. That was an answer I was really looking for! I don't know what exactly that will mean, or what the school can/will provide for us, but I am hopeful.


They mentioned how this is a life-long disability, and how he'll have a hard time in school due to it (academically speaking he'll struggle with concepts, especially since most are verbal, like math and reading) but he has other gifts (he is good with fine motor and loves to draw) and they gave us some tips. His "executive functioning" was below average. That made me sad.

 The Developmental Pediatrician said that we will probably never know why he is the way he is, but it looks like we have had every test or procedure done and we have done a good job. The Social Worker (who turned out to be not as helpful as we were hoping or expecting) said that it is probably something passed down in our families (we both had fathers with speech delayment as young boys); she may be correct. They did rule out it being from the True Knot in his cord discovered after his birth, since he doesn't have severe developmental issues. (it was good to put that at rest in my mind) But despite those comments, we have not cancelled our appointments with Genetics!

These titles should be able to get him the help in school that he needs. This means that we'll get to join the many who have an IEP for their child --something that I hadn't thought of before. I'm not too sure when that'll happen or what it really means, but I am apprehensive as I've heard so many discouraging stories of parents being in tears or frustrated at the IEP meetings since their child's needs aren't really being met. I'm nervous about that. But I'm trying not to think too far ahead.

Another title mentioned was Complex Developmental Behavioral Condition (CDBC), which is baffling me. There is very little information about it online. A lot of clinical pages, or ones on getting referred to have it diagnosed, but I'd like personal stuff, like blogs and pages on people it really effects. (which is one of the main reasons why I blog about Rhys'  issues... I know that he isn't the only one out there, and maybe someone else will read this and find comfort and support. Hang in there, Stranger! *fist bump*)  The other confusing part is how it was presented to us. They mentioned it briefly during the conference, so I was hoping more would be said in the full report. Instead it was added as an extra, saying that the school "may wish to identify R as having CDBC according to the Ministry of Education.....and recommend additional support in the classroom under this diagnosis."

What does that mean???

I'm not too sure what to do with this information. Does he have CDBC or not? Is it a diagnosis or isn't it? Don't the Specialists need to diagnose it not the school? Maybe it will help the school in receiving funding for his care and support, but what does it mean for Rhys? Isn't this name a bit more important than all of his learning disabilities? After all, that is an actual name...something that makes sense. It sounds impressive. It says something's going on. It has a label that I can explain to others.  Yet it also doesn't explain much at all.

After waiting for a good two years for this assessment, I'm finding it not as bomb-shell-useful as I'd hoped. I wanted answers, ...and I got some. But I also got more questions! This isn't really the end, but more of a beginning.

I think I'm going to have to meet with our own pediatrician for more answers. But for now this is a start. A partial diagnosis.  I'm happy that along with the really long full report, the specialists at least gave some recommendations for us, which appear to be very helpful. (They also included an extra report for us to give to the school.)


I remember being told by many friends that doing an assessment or having a label or diagnosis won't change Rhys. They seemed to say it to deter us from searching for something that may not matter. And they were right.

These names don't change him. But they help him. And that's a good thing.

Thankful Thursday

Welcome back to Thankful Thursday, a feature started by Louise at Talk Nerdy to Me, where we look back over our week and remember our blessings.  It is so good to see all that has happened, especially if you have had a particularly tough week. Being grateful is good for the soul. Here are just a few things that I am thankful for...


1. puddle jumping 

I am thankful for sunny days after the rain, for new-found (again) winter boots, for puddles to jump in and for friends to jump with after school.

2. birthday surprises

It was my birthday this past weekend and we had no plans for any special celebration. (which is strange for me) We had a birthday party to get Bryn to though, so while he was swimming, my husband drove myself and the two Youngers around for a few errands. As we were heading home, I accepted a phone call on my husband's cell from his mother asking if we could help our brother in law, since he had a flat tire. I agreed, so off we drove up to Walnut Grove. 

My husband pulled into the parking lot of Old Spaghetti Factory, saying that he would just call to find out where exactly our BIL was. I didn't think anything of it. Bryn then says that he sees his Grandma Lynn's vehicle, so I correct him to say that no, she wasn't going to be there, since she couldn't, and that's why we were. My loving, sneaky husband turns to me and says, "no, actually she is. We're here for a dinner for you!"

What? !!!   I was slightly shocked. I may have looked at him quite confused and stunned because I did ask, "what?" a few times! haha. I can't recall the last time he has shocked me like this! It was a nice surprise to have him plan an early dinner out with family for me!

3. youth retreats

We have joined a new church that is closer to our home and have been going since September. We're really enjoying it, and the kids are happy and we're feeling comfortable, even though we don't really know anyone yet. The Olders have joined the youth group and are trying to settle in, which is such a relief to see.

This past weekend was their Youth Retreat up at Camp Kawkawa for two nights. I am so thankful that the two got to go on that trip, and that they were safe and had a good time.

4. forge

My smart and clever and skilled husband has started up his own mini forge in our back workshop over the summer. He's always wanted to learn more blacksmithing.  Conveniently, this season a show called Forged In Fire started up, where four blacksmiths compete to build swords for a huge monetary prize. Not only have we been watching it, but our neice has been really into it. So for her birthday, my husband had her over to teach her how to forge her own item!

It was a pretty cool afternoon! Bryn joined her as well and they made a fancy coat hook. They were pleased with themselves.

I am thankful for creative husbands, for skills that are still important being taught, and for an afternoon to play (safely)!

5. cuzzie leaf jumping

After forging coat hooks, the cousins piled up our leaves and jumped in them! Isn't that the best part of Autumn?
 

Sadly, none of these leaves actually made it into the compost bin, but I am still thankful that they could run and jump and play. I am thankful that we have large trees and a yard with our house.

6. safe driving

Driving home from our dr apt on the 99 and we had come to a slow trickle. Instead of it being an hour drive home, it took 2.5hrs; all traffic on every major roadway was being diverted due to a big accident.  A police officer had to direct four lanes off of the freeway (one being driven from the opposite direction. You know it's not good when they have traffic on the wrong side of the road) and onto the 91, which was also crazy busy. Ugh! At one time, I was driving with no clue where I was going or how I'd make it back home! Something like that would normally make me all anxious since I get lost easy, but I am so thankful for His Spirit of Peace upon me. It was a crazy drive home, but oddly enough, not a terrible one. Rhys and I even made it to a gas station in time for gas and the bathroom! :)

7. drs appointments

This is Rhys' "I don't want to be here" pouty face. It makes me laugh.
 

We had a good specialist appointment, which I'll update on soon. Once I find time. Blah!
I am thankful for good doctors and appointments that go better than expected.

8. the cutest cowgirl

Eden had Western Dress Up Day in preschool, so I bought her a hat and bandana in her favourite colour, which she was so excited about. We happened to be out shopping before her class began and she found this big stuffed horse in a Christmas section for $3 and had to have it. I didn't realize until we got to her class that she wanted it for her cowgirl costume! How clever is that?

9. lunch dates

Since it has been so crazy busy lately, I feel like I haven't connected with my usual "old" friends in a long time. That saddens me.  I was so thankful to be able to visit with a good friend of mine this week and have her over for lunch. Yay for friendships that still survive and thrive despite busy lives.

10. online love

I know that many of the messages may have only been because FB reminded them, but I still love reading all of the posts that friends and aquaintances left to wish me well on my birthday!  I love that I still get surprised when I receive some of them. You know how you have a few friends that are there just because they're family or you know them just briefly through church, school or work? I was pleased to see that some took the time to say HBD. I love the love you feel online sometimes!

So that's my week in a nutshell. How about you? What are you thankful for?

you matter

Thankful Thursday

Welcome back to Thankful Thursday, a feature started by Louise at Talk Nerdy to Me, where we look back over our week and remember our blessings.  It is so good to see all that has happened, especially if you have had a particularly tough week. Being grateful is good for the soul. Here are just a few things that I am thankful for...

1. this boy

Bryn turned nine over the weekend! We had a pool party for him and celebrated at home, pretty simple.

I am so thankful for this boy and his silly, fun-loving attitude, his kindness and adventuresome spirit. He really is special in how he cares for his friends deeply.

2. our growing garden

We built a raised garden bed in our backyard a few months ago (and when I say We, I mean my Hunny!) and planted a whole bunch of seeds, not realizing that all of them would take and grow! We have so many Beets right now and Scarlet Runners (beans) growing! (and I forget what else)

Yay for fresh veggies!

3.  Anniversaries

My parents celebrated their 42nd Anniversary this week. 42 Years! I am so blessed by their marriage, and thankful for how they have shown love and commitment and strength through their trials and triumph. 

Also this week, my "half brother" and his wife celebrated 20 years of marriage! 20 is forever long in today's standards! I remember going to their wedding; they were the first out of my brother's friends to get married...or at least, the first out of the group that I knew.  (He technically isn't my half brother, I just liked to call him that! I have known him since I was 12, so I also like to call him "the brother I never wanted"! He means a lot to me and our family!)

4. Camping trips

Bryn was invited to go camping with his cousin, aunt and grandma this week! We figured that he and his cousin get along so well (they are a lot alike), that it would be nice to have them for company, and to make the camping trip more fun! 

They were local, staying up at a campsite near Cultus Lake, so it really wasn't hard for us to let him go for the week! I love that he gets to go out and have fun with his cousin. 

5. Sudden Sleepovers

Since we were passing right by her house (ok, mostly), I thought it would be fun to pick up Abi's friend for a sleepover. It's hard not living by your friends! And at this age, they still need a lot of parental pushing for get togethers!  I'm glad that it worked out for her to come over. They stayed up late watching shows on Netflix, slept in and went to visit a friend, and spent some time in the pool.  I am thankful for sudden sleepovers and time spent with friends!

6. New Wheels

Bryn is an active kid who loves to jump and run everywhere, so when he asked for roller blades for his birthday, how could we not say yes? 

7. Fun shopping trips

Abi convinced me to take her to the mall to buy some suspenders! (she is so nerdy!) I am so thankful for our fun excursions. She found her suspenders, along with a tiara (she likes shiny things!) and a really cool shirt. I found myself a cool wrap bracelet and dress! Yay for good deals and lots of laughter!

8. Evenings on the creek

The kids and I took a trip up to the campsite to visit Bryn, and to check out the site, and spent the evening floating down the creek on inflatables! It was a fun time! (post to come soon)

9. Friends in your neighbourhood

We learned that one of Abi's friends lives a lot closer to us than we thought! They can walk to eachother's houses, or meet at the park now. Yay! It's not easy going to a school that's not in your neighbourhood; your friends are spread out all over the city sometimes, so this is good news!

10. scheduled appointments made

We got the phone call this morning with dates for appointments to be seen at the Fraser Development Centre. It's going to be a busy September! Some of these appointments are for Rhys (who, for some strange reason, the woman thinks I would name my child RICE. It's funny how many people don't know how to pronounce the name. I understand that it can be difficult when it comes to non-typical names, but I still find it funny that I have to correct people. No, not Rice, but REE-S! It's the traditional Welsh spelling.)  Some of these appointments are just for me. (they used the word "conference." That means Big Stuff!)  I'm relieved and so thankful that we are moving somewhere, but also now feeling anxious and nervous! I'm sure I'll have a lot to talk about next month!

So that's my week in a nutshell. How about you? What are you thankful for?

A missing child and confronting fears

I almost lost Rhys the other day and it freaked me out.

I was downstairs cleaning (I have so much to declutter) when I thought I had better check on the kids in the backyard playing. It's good to do that every now and then. Just to make sure they are where they said they'd be and that they're not killing eachother. That's when I realized that Rhys was not with the Youngers and the neighbour. I knew he wasn't in the house, since I hadn't seen him anywhere, and of course no one else knew where he was either. Which upset me. How come they didn't notice he wasn't with them anymore? The last they knew, he was in the front yard, which frustrated me further. My rule is that the kids aren't allowed to play in the front alone. We have no fence and even though our neighbourhood is a nice one some people like to drive through it fast. I have a few concerns about the Youngers out there.

As I stood in the front yard, looking at our quiet neighbourhood, I was struck with a blank mind. I didn't know what to do, where to look, where to go. And then I was filled with anxiety. Rhys wouldn't be just a missing child, but one with possible-borderline-maybe special needs. And that's hard. He has no label, nothing to go on, just my knowledge of who he is.

I know that he wouldn't wander off. But he could get distracted. He's good at chatting with older people, so he could strike up a conversation and walk with someone passing by. He could also be convinced to go with someone. And he could also be easily snatched since he has no strength or know-how to struggle or fight back. (Eden, at four, would scream bloody murder if someone were to touch her!) And these are scary realizations.

I knew that Kai was next door, so I went to see if he knew where Rhys was. But, of course, he didn't either. No one knew. No one knew when he'd not been a part of their group. No one knew where he could be. Just where he wasn't.

I wasn't panicking yet but I was starting to feel frustrated. How come these kids didn't pay attention to their own sibling? I remember always keeping an eye on my little sister! Mostly, maybe, because she kept getting hurt. (which may or may not have been my fault at times. innocently of course) Kai said that he'd look inside the neighbour's house in case Rhys was there. (I'm not going to get into how I felt when I heard him admit that he could be in the rancher home and not know if his own brother was there as well! I mean, how would you miss that? There aren't a lot of rooms to lose a sibling in!)

I stood in the front yard, looking at my house, looking down the road, looking at my neighbour's houses. Where do I start to look?  The neighbourhood was the quietest I've ever known it to be. No cars. No people walking. No kids. And no Rhys.

I felt lost.

And in those moments, I had to confront my biggest fears for Rhys ---he's not a Special Needs Child. But he is.

He can't fight back. He can't speak for himself. He doesn't recognize danger. And what do I do about that? How do I parent a child who is seven and should know even basic skills on danger and safety?

I felt lost.

Thankfully, Rhys was not lost in the end. More like misplaced. He was at our neighbour's house after all. While the older boys were on the computer, he was playing with toys, I think. He had no idea that I would want to know he went next door, and didn't understand why I was upset. The other kids didn't quite get my anxiety either -- I'm happy that they don't recognize that he's delayed, but I struggle with having to explain that he is not like his peers. I don't want to, but I also need them to understand.

While the kids went back to playing, I laid on the couch with chest pain, trying to calm down my body so I could breathe. I may have triggered a slight anxiety attack over that half hour ordeal!

I don't know what to do now. I feel inadequate in training and teaching Rhys. I know that it's normal to feel unprepared in parenting, but he is a different type of skill-level. I keep holding on, reminding myself that we'll get in at Sunny Hill and be assessed and it'll get better. But I don't know when that will be. I refuse to think of other possibilities -- that he may not come with answers -- because I need that hope to hold on to. That chance of having an answer, a name, a plan, a way to tackle his needs. I need to believe that someone out there will be able to help him and us.

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!

someone slap a label on that kid!

It's funny how you spend so much effort as a teenager making sure no one labels you (unless if you were in the 'Popular' crowd, then maybe you liked that label) When you head into parenthood, you try to do everything right for your child so that no labels stick on them either. Labels are a bad thing, after all. They often identify you to a group, and most of the time, we want to blend in, and not stand out as being associated in a crowd.

I spent my teens hot headed (shall I say a bit Fiery?) and stubborn; disassociating from certain groups. I wasn't Popular or Athletic, nor was I a Skater. I wore the label Weird with pride, sometimes with indifference. I wasn't loud, but I was confident. I had enthusiasm and hyperactivity, yet was quiet enough to be a compassionate friend and listener. I didn't fit the stereotypical teenager seen in movies or on tv, or in books or on the news. And I was proud of that. Although I sometimes felt the need to fit in somewhere; a desire to be a part of a recognized group.  (As an adult, I now see that my small knit friends was the perfect group all on its own; we didn't fit the typical labels.  I see how there were more of Us in that average-but-awesome group than Them with the groups!)

We always seem to fight labels as if they are a negative thing, but I'm entering into a new territory that makes me question the aversion.  Especially with World Autism Awareness Day last month (April 2) and our own searches for an answer to Rhys' delayment.  Autism is one of the most recognized disorder out there right now and effects 1 in 68 children, according to online searches. (I came across a magazine article written in 2011 that said the stats were 1 in 100 children. Wow. Quite the change in 3 years!) It is not contained to a certain geographic region or race and effects so many lives that the UN has declared a National day of recognition for it.

I think it's great that there is so much going into support to help families deal with the complex issues they face with Autism. And it's great to see walks and fundraisers for more research so that the help is there.  But it is on a day like that day that it makes me wish Rhys was Austistic.

Now, dont get me wrong. I do not wish any type of disease or imparement or illness or stigma on any of my children. But I do wish I had an answer for him. And autism would be an "easy" one.  It would mean knowing how to deal. It would mean having a plan. It would mean getting the support he needs. It would be a start to the next phase of life, but at least that phase has a huge community of doctors, supporters, therapists, and even celebrities all who understand and deal with the same things you deal with. And that label gets you in the door.

I have looked into the  Austism Spectrum but Rhys just doesn't fit that many criteria; and I keep looking every few months. I do those at-home tests online, but it doesn't all add up. And I've had his preschood teacher and his doctor and pediatrician all say that he doesn't fit the label. Which is a good thing. But also a frustrating thing.

Currently, he is a label-less boy who is falling through the cracks.

As I wait for something to pop up for him, I find my other son seeking a label as well.  I was talking to my friend about the teacher thinking that Kai may have ADHD, and my surprise at him fitting some of the symptoms. She looked concerned and replied with a shake of her head, "Oh, you don't want to put him on medication!"

I understood her thinking. It can seem that doctors and teachers want to medicate and subdue our children. Especially our boys. And it's not something that I want to do either, but after talking with the school SEA Co-ordinator, and seeing how Kai is at home, I can't help but feel that I'd accept medicating him if it will help!

If slapping a label on him gets him the help he needs, then I'm all for it! Please, give us a name! I am learning that without a name, schools can't seem to do anything, and doctor's don't know what to do. We need that label to move forward.  I'll take an "easy" and friendly, well-known one (like Austism and ADHD). I'll even go for a complex one that is misunderstood. I just want something.

And to think that one day I would be desiring a label for my child! We don't want to let a name hold him back, but use it as a way to understand and learn. And to move forward. 

It helps get you through the door.

Confirmation

We finally got our confirmation letter that Rhys will be seen by the Complex Developmental and Behavioural Conditions Program (CDBC) at Sunnyhill!

I may have cried a bit when I read the letter!

We don't have a date yet and I don't know how long the wait is, since I have to mail in our consent forms first (so that they may inquire with anyone else who has worked with Rhys in the past).  I also have to track down any forms from recent doctor and specialist tests and visits to send along. But this is a start!

Falling Through the Cracks

We fired our paediatrician this year. Her ruining our referral for an assessment at Sunnyhill did it for us.  When we approached our initial appointment with the new paediatrician last month, I tried to gather up all the necessary information so he could be caught up on Rhys. I didn't want to have to go through tons of paperwork or do unnecessary testing that would put us back by several months. I already feel we are behind! So I got my Rhys Binder together and went through my last notes to see what would be the most important to mention. I never know if I will have to spend the time trying to convince the doctor of our need for further assessment or if our words will be enough.

Prior to the appointment, I asked Rhys' teacher and the SEA in the classroom if they could put together a letter for us to give to the pediatrician. It was handed to me on the last day of classes before Spring Break and put together with help from the Special Education Coordinator.  It was an interesting letter. Most of it I already knew about, but some threw me off, and some parts made me actually laugh out loud.

It mentioned how he "presents physically, socially, and academically as being younger than his kindergarten peers", specifically pointing out that he can do and say things that "are innapropriate or that his peers find odd." (he does not understand personal space, and likes to dance and hit his bottom---that makes me laugh, but it's uncomfortable to people.)  His speech is still very unclear and he is learning at a slower pace than his classmates.

There was a noted incident where the class did a skipping activity and he couldn't do it and he fell. The ability to skip is a skill that he has only gained last year in preschool, so he has not mastered it yet; he is still working on his balance.  It was pointed out that his reaction time to break his fall is slow, so when he stumbles, the fall can be quite hard. I hadn't thought of that before, but it makes sense.  It explains all of the times he's cried and cried over a "simple" fall--it may not have been so simple for him.

What made me laugh was when his preschool teacher described him as "oddly optimistic". What does that mean? I guess he can be a bit more enthusiastic than necessary.

What frustrated me was the I have two pages of how Rhys is different than his peers and is struggling, yet no teacher or SEA has talked to me directly about it. I have tried to open up a dialog with them though, but things haven't gone far. Yet I read: "the challenges in these areas are directly effecting his progress academically and his ability to interact socially with peers in a meaningful way." So why are they not meeting with me about it?  Why have they not brought up ideas or suggestions?  Why have they not done their own assessment?


Just before Christmas break, his teacher mentioned about him "falling through the cracks." How true that is.  He is behind in many areas, but he doesn't need an aide in the classroom all of the time, yet he does need more one-on-one attention.  I can see how he misses out when they don't know where he fits.


When we met with the new pediatrician, he used those same words.  That it seemed that Rhys was "falling through the cracks."  He is gaining skills, but behind in many, but not so far behind that he obviously needs help. It's hard for me. I hate to think that instead of Rhys getting the help he needs, he may be seen as disruptive or a troublemaker by the teachers when he gets older.

Our new pediatrician is going to talk to Sunnyhill and see about us getting an assesment done, but he wasn't too sure if there was a cut-off age. I didn't see one online, so I hope there isn't.  It would seem so unfair if they didn't accept his case, since we were on that wait list at age five and still in preschool, and it was the old pediatrician's fault we weren't anymore.  It also would seem strange to have an age limit since some of these delayments come out more in the first years of school.  Hopefully we will hear something soon.

He also mentioned a group called TIDE BC. They are out of BCCH and work along with Genetics. The goal is to see if therapy would help offset some delayments in children, decrease that gap, and maybe increase some skills. A lot of it went over my head during our appointment, but when I looked them up online, I felt some hope and excitement. Wouldn't it be wonderful if this team of researchers and specialists were able to find some sort of treatment that would help Rhys?  We haven't heard from Genetics yet though, regarding any test results, so I don't know if they even found anything or were even able to get anything from the bloodtests. (I can only assume that silence means that there is nothing to discuss.) The doctor wasn't even sure if we would be a good candidate for TIDE BC, but hopefully someone will find our case interesting enough to work on!

It's hard when you have teachers and doctors telling you that your child is falling through the cracks and getting further behind but they can't seem to do anything about it.  It's frustrating and disheartening. But I am trying to be hopeful that we will get somewhere with this new pediatrician. I know that there are options out there, at least.

Incident on the playground

When I picked up Rhys from kindergarten today, his teacher told me there was an "incident on the playground" which left him with a scratched face. I didn't think much of it; he must've fallen. He trips easily. But after half an hour I thought it looked suspiciously like scratches from a hand. 

Sure enough, when I asked him, he said one of his classmates did it. But he couldn't really remember a lot of the incident (part of his delayment issues come from lack of memory and ability to explain or speak properly), so I don't know what happened. Something about the girl being tagged or not being tagged while they were playing on the playground. (it was just the two of them, plus another boy, during free play. The rest of the class was inside the room, which is steps from the playground. So no adult witnessed this either.)


Sadly, this girl has been rough with him a few times.  I'm not too sure what to do about it. I want to mention it to the girl's parents, but I also don't want to come out as if Rhys was completely innocent in it either, since I don't know if he was.  Did he say something to her? Was he being mean? Did he shove her or retaliate? Not that that excuses her scratching in any way, but it does make it less of a 'your girl is beating up my boy' and more of a 'our children don't get along' thing.  I've never had to deal with this in the other kids.  

It makes me sad because he is a sweetheart. It also makes me frustrated that it is shrugged off by the teacher.  He already talks about how one girl (a different one than this one) is mean to him and always shoving him!  And I don't understand why.  Is he doing something? What causes them to shove him? (the two girls seem to like to do this) My poor boy, who can't explain himself very well.

Year of Specialists

I am fast beginning to realize that this is the year of appointments.

This week we have a Breathing Test for Abi. That should be interesting. I'm curious as to what will show up and what the specialist will suggest or say about her lung function.

We have her ENT appt booked for May. Yay! She has struggled a lot this winter with her tonsils and asthma and so I am happy to have this addressed. Especially when every doctor we saw (her own, plus two at the medical clinic) mentioned how Huge her tonsils were, so much so that our own doctor said that they were "almost kissing"! That can't be right!

We are finally seeing a new pediatrician for Rhys! I am so excited about that! We have actually seen this doctor before, when Bryn was a baby and struggling with reflux. This doctor also, incidentally, was the one on call when I brought Rhys into the ER at one month old and very very sick, and he's the one who did all sorts of tests on him (including spinal tap) to determine why he was having apnea spells. That was a scary visit! But this upcoming visit next month will be better! I'm looking forward to seeing a new doctor and hopefully getting something sorted out for Rhys. I hate having this Mommy Gut tell me something isn't "right" with my boy, but also having him "well enough" that I need to explain and justify myself.

For Kai, we got confirmation for his annual cardiology appointments in August, which is nice. I hate having to call BCCH to get our appointments booked. It is such a hassel and the receptionist never calls you back!  The doctor also has his 24-Hr Holter Monitor booked, as well as an exercise test, which shall be interesting.

Of course, we also have our usual dental visits (I'm not looking forward to an upcoming one) and an annual eye appointment next month as well. But those are normal.  Hopefully our "un normal" ones will give us good answers though. And for that I have hope and slight anticipation!

Family Field Trip

I let my kids skip school earlier this week!  It was actually their Father's idea! I know, how unusual for him, but he thought it would be something fun to do. Our annual membership to the Vancouver Aquarium was coming to an end and so why not take one last trip downtown? He took the day off of work and we planned to surprise the kids in the morning.

Our first plan of action was to not set our alarms, but to sleep in. Of course, this is my husband, who doesn't know how to sleep in, but that just meant that we could plan it more accurately. He got out of the shower and woke me up and then rushed into the room, yelling at the kids that we were late, we slept in, let's get moving, we have no time for breakfast, let's go!  I was surprised at how calmly the kids were, and how much they didn't grumble!

Our ruse was to say that we had to head into Surrey to drop off Hunny at the skytrain station. That was just so they didn't question why we were going the opposite direction of their school. But then, we stopped at the SMH Outpatient building so that we could FINALLY get Rhys' bloodwork done. (Remember our Genetics apt and the tests that he wanted to do way back in the summer? It has taken us this long to do it. First, the phlebotomist' couldn't figure out what one test was and was waiting to hear back from the doctor. Then we had to fast for one of them. Then Rhys didn't do well and had his vein collapse during one test. And then we just plain forgot over time. *blush* But we have finally done it. And hopefully it is all good and we will get answers next month!) I went in with him while Hunny took the kids for a quick breakfast, grabbing us something as well (Rhys had to fast for one of them, so we just made everyone wait on breakfast to make it easier!)  It was after we got picked up from the Centre that we told the kids the news!  They actually responded not as excitedly as we were hoping! Instead, they talked about how they already guessed something was up! haha. We have astute children!  Having their Father and I so calm about being "late" probably threw them off. They also guessed since I "forgot" to make them all lunches for school and suddenly Hunny had some course to go to for the day that they hadn't heard of!

It was a fun morning trying to be sneaky!

 The Rainforest section. I like this part. It's so humid inside though, but I like being warm, and I like how you see other animals other than just aquatic ones. There are Marmosets, tree frogs, ducks, sloths, parrots and these macaws to name a few.  I obviously have toddlers because I was thinking of all the Baby Marmosets and Blue Macaws that Dora and Diego have rescued or helped out or seen in their Nick Jr. shows!

Jellies!  They fascinate me! I love the jellyfish section. I didn't realize there were so many different varieties!

Rhys found a different type of "fish" in this tank!  By coming early in the morning, and on a school day, we got to watch some tanks be cleaned. We also weren't trying to keep track of kids or find spots to see through crowds. It was nice!

I love the Tropical section where you can see some sharks and the sea turtle! Thanks to the movie Little Nemo, now every time I see the sea turtle, I have to say "Duuuude!"  (the kids don't get it!)  This tank is huge and very busy!

Little Nemos!!! The Clownfish were Eden's favourite.

We had a great day at the Aquarium. Since it wasn't busy (two or three classes arrived by lunchtime, or at least we were all in the same place at that time) we got to watch the Beluga show and the Dolphin show. We had never been able to see those before due to crowds, so it was so neat! I had no idea that dolphins could swim so fast!  I love seeing all of the tricks that the dolphins and belugas had learned to do. I'm not a big "fish" person, but it must be amazing to work with these animals!

It was worth it to skip school!