Spring break update

Ok so I lied, I’m bad at updating a blog. I mean to do it regularly and I don’t so sporadic blog posts will be the norm. What can I say? I’m a busy mom and as therapeutic as writing is it takes a back seat to everything else.

So when last we spoke I was about to take Buttons to another speech assessment. The outcome was 50/50 the good news is her speech has progressed amazingly, the SLP was amazed by how far she had come in 4 months. The bad news, although her speech is progressing, she is using more words and is speaking clearer the SLP thinks that she may have an auditory processing problem, that she hears the words is and able to say words but has a hard time figuring out when people are talking and what they are saying especially if there is a lot of background noise. She wants to see her again in April and in the mean time I’m using a lot of signed exact English with her to reinforce that I’m speaking to her and to make sure she is understanding what is being said.

Buttons still does not have a date for her ASD assessment, last I heard they were hoping for September, over a year from when we first asked for services. She is still wait listed for OT so we are working at home with her to meet her sensory needs and try and regulate her system as best we can. She is also wait listed for supported child development so she can have a one on one for at least a couple hours a day in daycare but that is less of an issue since papa bear has been laid off and home full time since December.

So there you go not much to update, just still sitting on wait lists with no end in sight *sigh*

Onward

So up until now all my posts have been background information. A summary of how we got to where we are now. I think I have that covered so it’s time to talk about more recent events.
Tomorrow we have out second ever speech appointment. This is a 3 month (actually 4 months because they are so back logged) follow up to the initial assessment Buttons had back in September. At the first appointment she was described as an “interesting child” Princess was with us during the first appointment and won’t be there tomorrow so we’ll see how that goes. Buttons follows her social cues a lot, and will follow her lead and repeat what she says a lot so it will be interesting to see how she does in an unfamiliar environment without princess to guide her.
Buttons’ speech has come a long way since the initial assessment, so I’m not sure if we will get to hold our spot on the wait list or not. Honestly I’m not sure exactly what is considered abnormal enough to warrant therapy. According to Ontario children and youth by 30 months a child should

understands the concepts of size (big/little) and quantity (a little, a lot, more)
uses some adult grammar – “two cookies”, “bird flying”, “I jumped”
uses more than 350 words
uses action words – run, spill, fall
begins taking short turns with other children, using both toys and words
shows concern when another child is hurt or sad
combines several actions in play – feeds doll then puts her to sleep; puts blocks in train then drives train and drops blocks off
puts sounds at the start of most words
produces words with two or more syllables or beats – “ba-na-na”, “com-pu-ter”, “a-pple”
recognizes familiar logos and signs – McDonalds golden arches, stop sign
remembers and understands familiar stories

I don’t think Buttons has all that down yet, and she still speaks primarily in copied phrases so we’ll see what the SLP has to say.

In the mean time we are still waiting for everything, OT-wait list, IDP-wait list, SLP-wait list, supported child care-wait list and Autism assessment-wait list. So we’ll just wait.

Monkey, Princess and Buttons, the other Monkey

Buttons is our youngest, she is 2 1/2. For the first year of her life she developed just like Princess did, she slept well, ate well, played with us and on her own, hit all her milestones, started saying simple words at 10 months and had a bunch of words and signs at a year. Then she didn’t. She lost her words, she lost her signs she stopped sleeping through the night, she started having terrible meltdowns and thing started going sideways. That’s the biggest difference between Buttons and Monkey.

Monkey has been the same monkey his whole life, he has never slept well, bath time was a nightmare from the very first day, he had unexplained fevers as a newborn, would scream for hours on end, was slightly behind on his milestones and was a very picky eater. He refused to crawl, which we later figured out was because of his tactile sensitivities, he struggled with food textures, had horrible separation anxiety and would have terrible meltdowns, violent fits of rage from a very young age. He was born with Autism and it’s obvious when we look back at even the first six months of his life.

When monkey was 5 1/2 Princess was born. Having a second child really made me realize how many of Monkey’s quirks were not typical. Princess was sooooo much easier, yes she cried but when she did you could figure out why. She had a different cry for “I’m hungry” than she did for “I’m wet” she slept for longer than 10 minutes at a time, she liked being swaddled, the list goes on.

Buttons was born when princess was 20 months old. Thankfully other than some terrible acid reflux, Buttons was a pretty easy baby too, she slept well, nursed well, developed the same way as princess did, until around 13 months. Then she lost her words, forgot her signs and started started stimming. Turns out I’m really good at denial. I remember thinking “no, no, no please start talking, please start talking and stop lining up your trains, please god just stop lining up the trains and say something!” I pushed signs in a big way, we had baby signing time and signing time with Alex and Leah on endless loop, I signed everything, formed her hands into the signs and made her do them, and around 18 months it clicked. She started signing and not just more and all done, by her second birthday she had over 100 signs in her vocabulary and “words” started to come back. I got a referral to speech therapy around that time, and at 27months buttons, princess and I drove to the next town for a language assessment. The SLP was really nice, but unfortunately for me and my happy little place of denial, she noticed a few things about buttons too. She noticed she doesn’t make eye contact for longer than a split second. She noticed that her words were not always her own but often just an echo or slightly modified repeat of what someone else had said. She called buttons “interesting”. She said we needed a referral to a pediatrician and probably the infant development program. She stomped on my denial, and sent us for a hearing test.

I called the IDP and self referred for an assessment, booked the hearing test and quietly slipped back into my comfy little place of denial. The hearing test came back normal, the IDP met with us and put buttons on their wait list and that was that, I didn’t book an appointment with the Pediatrician, after all buttons had words now and they were coming along quite nicely. No problems here nope, and I hate wait lists, Monkey was already on the mother of all wait lists for his autism assessment. How many wait lists should one family be on?

Monkeys time on that wait list was almost up by that point. Our meeting with the SLP was in September, IDP was in October and Monkeys ADOS test was at the end of November. The results of that test helped snap me out of denial, partially.

Monkey was found to be Autistic, no big surprise to any of us, even his Bio dad accepted the diagnosis without question. I think we all knew, deep down we all knew, we just didn’t want it to be true. You notice I said Bio dad? Yeah Papa Bear isn’t Monkey’s biological father, he’s been in his life since he was 2, and has been parenting him and supporting him and loving him since then but no blood relation, that’s how I held onto the last little shred of denial I had left about Buttons. They are half siblings and to admit she might be autistic or have autistic tendencies was admitting that Monkey’s differences could kind of be genetically my fault. I know it’s no ones fault blah blah blah but I’m the only genetic link between them, you do the math. Don’t worry I’m not wallowing in pity or anything, I just have a rational thinking brain and can make simple connections and accept them for what they are. Anyway enough about me, lets get back to the story.

After the diagnosis I had no choice but to pull my head out of the sand and really look at what it was that we had to do to help Monkey meet his full potential, I poured over websites and books and read up on therapy methods and funding and every site on the Internet and every book about autism all have one thing in common, they all list the signs of autism, they all say to make an appointment with your pediatrician if you see things like a language delay, especially if you see language regression, if your child walks on their toes, flaps their hands, spins, avoids eye contact, has trouble sleeping….. I could go on but I think you get the picture. I was panicking on the inside, I was the only one that saw these things in Buttons. Was I imagining it? It couldn’t really be that bad or someone else would have noticed right? I mean someone other than the SLP and the woman from the IDP, surely it must just be in my head right? Oh how I loved my denial. One day my denial crumbled, it crashed to the ground in tiny little pieces too small to hide under and it started with one little joking phrase uttered by Papa Bear. Princess was doing something crazy like 4 yr old princess ballerinas do and he turned to me laughing and said “and she’s the neurotypical one right?”
CRASH!
The my mom and I were talking about getting Monkey’s funding in place and she said “So now is Buttons getting some help too?”
SMASH!
The phone rings at work and it’s the daycare, Buttons is having a meltdown, it’s been going on for over an hour and they don’t know what to do. I find myself explaining how to roll her into a blanket and apply deep pressure to her joints to ground her and bring her back. “Is that an a autism trick?”
TINKLE TINKLE TINKLE the last pieces of my little denial shield fall to the floor. “Yeah it is, I’ll be right there”

Guess it wasn’t just me…

November 29, D day

I’ve heard people talk about their “D” day. The day they received the diagnosis. The day everything changed.
I don’t really understand that. Sure maybe life gets busier after that, you have therapists and groups and IEP’s and funding and forms out the wazoo to deal with but how can you say everything changed? Maybe the difference for us is the fact that Monkey is 9, we already know him, we already understand what his strengths and deficits are, we have already been living with autism so when the psychologist sat me down and told me that Monkey is autistic if wasn’t an earth shattering blow. It wasn’t something I didn’t already know, so for me “D” day changed very little. We walked out of that office together just as we walked in, mother and son, the same mother and the same son just now we have a plan and some money and supports to work with. This diagnosis was a good thing because it didn’t change Monkey, he’s still the same boy he would be if he had never been assessed, but it opened up a world of information and understanding, it has given him support in school, it is giving him access to therapy that we couldn’t afford without government funding, and in some ways it has renewed our faith in our abilities as parents. It has also opened doors for our youngest daughter buttons, buttons is a carbon copy of Monkey in so many ways. She moves like him, she melts down like him, she struggles to figure out her place in a group like him, and before D day every doctor dismissed my concerns about her like they had with Monkey. Since he received his diagnosis though things have changed for her, but I’ll explain that all later, I have to go break up a fight over space hopper ball now.

It’s almost our turn

November 2012

I get a call from the autism assessment network, after 9 months on the waiting list it is finally our turn. Monkey is scheduled for an ADOS test on the 29th. I’m scared. I’m not scared that he is going to be diagnosed, I’m scared that he won’t be. I’m scared that after 6 and a half years of waiting for this test he is going to turn out to not have autism, the experts are going to sit me down and say well mama Bear you really did a number on screwing up this kid. He’s not autistic you’re just a shitty parent. I’m worried that he will act “normal” with all his might and not get the diagnosis and we will be here in same place with no supports for him in school and no behavioral therapy and no understanding of what is going sideways in his life. I’m scared that I really may have been imagining all of the autistic tendencies he has and I’m scared that it’s all in my head and I really am just a horrible failure as a parent.

I have pages and pages of questions to answer, assign an always/sometimes/never to a list of behaviors. It’s hard to sit down and make an inventory of all the things your child can’t do. I’m crying a lot.

I finally put my foot down

February 2012

Meds have been helping Monkey focus but almost to a fault because now he can focus in all the sensory input he has been able to deal with and filter before. He is more bothered by background noise and tactile sensitivity again, and oh the defiance! Time for follow up with the pediatrician.

After explaining all the returning symptoms and the violent outbursts and constant defiance to Monkey’s doctor she came up with a new hypothesis, one that hit me like being punched in the gut and made me desperate and angry and finally after 6 years made me put my foot down.

The diagnosis ; Oppositional Defiant disorder. ODD was one of the conditions I asked about during our first appointment when Monkey was 3, along with SPD, and of course autism. I’ve worked with many kids with ODD and the scary statistics are that kids with ODD that do not receive intensive behavior therapy before the age of 8 have a very low chance of overcoming it and in all honesty (please forgive me if I offend you, i’m only stating my opinion based on my experience) our corrections system, especially our juvenile corrections centers are full of people with diagnosed or undiagnosed ODD. I refused to believe that my son was suffering from 3 separate neurological disorders, I refused to accept that after asking about these disorders for 6 years now the doctor was flippantly adding them to Monkeys chart like she was describing what he was wearing or the color if his hair. I refused to accept that this was the final word because I know my son and even a combination of these three disorders did not explain why he couldn’t maintain friendships, why regardless of the fact that I’m of the non extreme attachment parenting type, co-slept, wore him in a sling, and responded to his needs he still didn’t have a normal Parent child attachment. Why he never puts on socks ever without being prompted, why he can’t handle a change as simple as having to make one extra stop on the way home from the grocery store. I told his Doctor that I was not accepting this! I told her that for 6 years I had been fighting to understand and help my son and that there was no way he could have SPD, ADHD, ODD, and a host of social and attachment issues and not be on the spectrum! I told her that I was tired of all of it and that once and for all it was time for her to send us to the autism assessment network. I wanted him assessed now! She agreed to file the referral but said she didn’t know if he would be diagnosed or not. She didn’t have to know because right there at that moment it became clear to me that I knew, I knew there was no way it wasn’t autism. I knew that every time over the years that I asked a doctor or therapist “could this be autism” I wasn’t really asking, I wasn’t asking for an opinion or to be reassured, I was preparing myself, I was conditioning my heart and my mind to accept that my beautiful boy may not be the boy I expected to have, that my parenting journey and his life path may not turn out the way I had pictured it and by over and over asking the same question and hearing myself answer it internally over and over that autism was the only explanation? It was the only good fit, I was able to accept the diagnosis before it was even given.

The difference a good teacher can make

Grade 3 was as different from grade 2 as December in Whitehorse is from August in Las Vegas! Both were uncomfortable at times but for all the failures and struggles we had in grade two we had just as many successes in grade 3. The first major change came hand in hand with Monkey’s second diagnosis. Part way into the year his teacher asked to sit down with me, she brought up ADHD which I had always been told was not an issue for monkey, that his short attention and flittering from one thing to the next was just a byproduct of the SPD. I’ve always been against medicating kids and it wasn’t the first time someone had suggested meds for my little man but this time was a little different, for one I was desperate, exhausted, had tried everything else and two was the way the teacher presented it. Basically she said over the years she has had a lot of kids come through her door and many of them were put on ADHD meds and one things she had learned was the kids that didn’t actually have ADHD were not helped by the meds so if we decided to try it we would know fairly quickly if they were working and if they weren’t we could stop. She also said that it was important for her to see kids on the right dosage and that if she saw that monkey was not himself, if the meds made him lose his personality or zombified him that she would be the first to say this is not working. She didn’t want him to be easier to deal with just wanted him to be able to focus and not become so frustrated. So we made an appointment with the pediatrician. Who after a few months if assessment forms and follow up appointments gave us a prescription for biphentin.

We started at the lowest dose and I didn’t tell the school, I didn’t tell his teacher, the principle the secretary, no one knew but me, papa bear and monkey. We started the pills on Saturday and by Tuesday at 10:00 am we knew the meds were working. I got a text from his teacher, yes he goes to a fabulous school where the teachers are willing to call/text you during the day to let you know what’s going on, she said she just wanted to let me know what an amazing day monkey was having. He got his math done in class! The very first time he had ever completed an assignment in any subject during the allotted time ever, and not only did he get it done but he was the first one finished! That moment was a real turn around for Monkey, for the first time ever in nearly 4 years of schooling he finished something. He was the first one done and had all the right answers, he was able to show that he knew the material, that he was smart enough to do it, his first small success in school and he was very proud of himself.
Now don’t get me wrong that was certainly not the end if our problems or I wouldn’t be writing this blog, we had to play around with dosages and timing and it took us a few months to find out what worked and we have to monitor it fairly closely and we have to monitor his weight more because one of the side effects of the meds can be decreased appetite which is scary in a child that already eats so little but it is working for him. When the dose was too low he was able to tell his teacher “I’m taking medicine to help me concentrate but it’s wearing off too soon” that is a direct quote! He could feel the meds wearing off and was aware that they were and aware enough to realize that if he waited until he got home he wouldn’t remember to tell me that the meds were wearing off too soon so he let his teacher know so she could tell me.

I’m still not an advocate for medicating children, I strongly believe that there are many many kids zombified into submission by big pharma because their parents aren’t willing or able to look into what else might be the issue or how else they can help, but the drugs exist for a reason and for those who really truly need them they can be a godsend so if you have contemplated meds before and tried all the fish oils and diet changes and limited screen time and banged your head against the wall, please step back and loom at the big picture, talk to your child’s doctor, talk to his/her teacher, don’t let mommy shame about “medicating into submission” stop you from trying something that could change your child’s life, make an informed decision and be objective.