That ASD Mom

Heart warming moment

Yesterday was the twins’ 8th birthday.

I had kept my daughter home the day before as she had a cough. While I was in the class, explaining the treat bags to the substitute teacher, I turned and saw my daughter was in the middle of a crowd of 6 girls hugging her and saying “so glad to see you back” and “happy birthday”. I wish I had gotten a picture. It warmed my heart to see my daughter embraced so warmly as I had worried that, despite teachers telling me that she is a social butterfly, she wouldn’t really have friends.

Geneology post

In my spare time, (yes, I know, what spare time? well you have to carve it out), I dabble in geneology. My hobby is that I’m a cemeterist, meaning that I spend my time in cemeteries wherever I go and take photos, upload to the internet and then do research on these people. As a result, I have quite a large contribution to the geneology world.

Yesterday, I was sent a message via one of the geneology sites that I use for research, and asked about researching in Canada. The person had a Purple Heart in their possession and wanted to get it back to family. She asked (since I had input the family name on a particular site) if I could help her.

“I would like to return the Purple Heart to his family. However, I have no experience with research in Canada. I do not know his fathers name. These papers were saved from a residence of his widow in Chicago. If you could assist with any research or give me any ideas on how to find Craig relatives, I would be most grateful.”

As it was a person not related to the Craig family that I posted, I did some digging. I am happy to say that after only a day, I have successfully found the information about the person and located some family and connected this woman to a living relation of Mr. Craig and hopefully this Purple Heart will find its way to a family member who will cherish it.

Proud mama moment

My children wake me in the morning, usually before I’m ready to get out of bed, likely because they heard their father’s alarm go off at 6:30 a.m.

This morning, they both came to the bed (Thank goodness it is a king size bed!) and get in. My daughter says ‘I’m done sleeping. I’m bored of waiting.” So I told them to go downstairs but DON’T bug the cats. After freshing up, I wander downstairs to do breakfast for all us. When I walked into the kitchen, there was a step stool pushed up the to counter and the cupboard is wide open. My daughter was over by the sink smushing the cat food with a spoon into their bowls. She has watched me and “helped” enough to know what to do. I was so proud! and told her so. The fact that she did it properly and had taken the initiative. Guess that is just a reminder that the twins will be 8 soon and are capable of doing more than I give them credit for. (as the autism issues sometimes get in the way.)

#proudmama #autism proud

Something needs to change

Growing up as a “special needs” kid is hard. I think easier today than when I grew up, as there have been advances in technology and services, as well as awareness, but still hard.

My twins are lucky that there is awareness of Autism and services provided. We are lucky that we live in BC rather than other parts of Canada. Where I grew up in the Maritimes, I’m told that services for autism are pretty much nonexistent. In NS, it is offered through the local hospital, IWK, and of course, there is a years long wait list, after which you have missed the “crucial window” to help your child. Irony.

Ontario has its problems as well. From what I understand, the Ford government has tried to dismantle the funding, what little there is, given as they aren’t “utilizing it well” with these “unnecessary services”. Here in BC, we are given 22, 500 per child (upon confirmation of diagnosis) that drops to 6K when your child turns 6, because they are supposed to be in the school system. You still have therapy and services to pay for, and then end up out of pocket for a lot more than 6K allows. Yes, the AFU (autism funding unit) monies are merely to suppliment the funds for your therapies… but still…. drop in the bucket.

SO… add this stress (presistant) to my current stress, that of a new school year. We live in the lower mainland of BC, Greater Vancouver. Each school district is set up differently. We are fortunate enough to have EAs (Education Assistants), and other aides in our classrooms. My children qualify for an ABASW. This is a support worker who is trained in ABA techniques. ABA is “Used as a scientific approach to understanding different behavior, applied behavior analysis (ABA) is a method of therapy used to improve or change specific behaviors. In simple terms, ABA changes the environment in order to change the behavior.” This therapy has been designated as “the accepted” method in BC as per a supreme court ruling.

In the School district that I’m in, there are 500 requests for an ABA SW, and only 250 trained persons to fill these positions. One of my twins has never had an ABA SW, because it comes down to the fact that the posting does not have enough hours. The other has had the same person for 3 years. This year, entering grade 3, is the first year that neither has an ABA SW, and to my knowledge, through 4 rounds of postings, neither has been picked, which means that my children will be assign an EA to work with them. Of course, the person assigned could be fabulous! They could also be a bad fit for my child as well. While the school district states that they will work to get a good fit for the child, the fact that my child’s need for help is a “posting” at all, is disturbing to me. I’m at the mercy of CUPE and union rules, and seniority issues, and bumping, and frankly, I may get someone who just doesn’t WANT to work with my child[ren].

It is hard enough to be a parent. It is hard enough to parent twins. It is harder still to parent special needs children with their unique issues and personalities. Both of my children also have a congenital heart condition which adds more factors. Luckily, neither are on meds, but one is waiting for another surgery. Assuming that they are growing enough, assuming that they learn to eat fruit and veggies (at all)…. *sigh

Stressed mama.

So yes, something needs to change. I’m not sure what system I think needs to change more. Adding Autism to medicare would be a help. Increasing the amount of autism funding to more than 6K would be a big help. (Of course, it has been argues that providers will then raise rates putting us parents back in the hole.) Hiring more people to be ABASW would definitely help. Getting a regulatory body rather than CUPE, a union, to assist/enforce standards would help. Having to fight systems so that my children can gain access is not the life that I thought I would have. My mother fought for me to access my education; so that I would be integrated into “regular” classes, rather than put in remedial, just becuase of my hearing loss. I had a good role model but I have a lot to learn still.

Something needs to change.

Summertime “fun”

Summer is upon us. And what to do with kids…

I had to plan this in advance. I booked a week of day camp a month (one for July and one for August), and the grandparents requested to have them go to their place (which involves a ferry) once each month. Somewhere in between all of that, I had to figure out ABA schedule (lax for summer) and resume the “food program” (trying new foods) and implementing a token board to regulate their Ipad usage.

For the past 4 days, I have driven them an hour into the city to a day camp run by the Canucks Autism Network. I hate driving in city traffic. I’m not bad at it, but it causes me stress.

Today, on day 5, the final day, the boy throws an epic meltdown with yelling because he didn’t want me to put sunscreen on him, …. but he did. SMH! So we were late to leave the house. On a Friday. and yet traffic was light and we got there with 5 minutes to spare.

When we first had my twins diagnosed, it was a battle with my daughter for most of the past 2 years. This year, the focus has been him. He has more rage, more behavior, and I had have less tolerance, I guess. I have had to step in a lot when my husband “deals” with our children, as his frustration comes to a head pretty quick.

In the end, behavior intervention is for all of us. Yes, it is targeted for the individuals needs of my children, but it is not just about me paying someone else to do it. It is also about training me. I’m sure that my parents had their moments. But to me, they looked like they knew what they were doing. So when my daughter told me that she hates me a few months ago, I wasn’t hurt by it. I was actually amused, as I was remembering that I said this my parents numerous times. I know that she doesn’t hate me, (even though she will emphasize it. ” I. HATE. YOU!”) but rather she hates what I am telling her.

My son is more like me than I realized. I protest going to places, but once I am there, I am fine. It depends on the social occasion. So even though it was a battle to get him to put shoes on and get in the car, he was fine once we were there. I’m sure that they will tell me what a great day they had when I go back this afternoon.

To all the Jennifers that I have known and loved

Growing up in the 70’s, Jennifer was a popular name. According to an article in the National Post,

Beginning in 1970, Jennifer was the top female baby name in the U.S., a position it would hold for a solid 14 years. The run was mirrored in Canada and, to a lesser extent, in the U.K. All before the Internet, before there was any readily available list of popular baby names from province-to-province or state-to-state.

Sure, lots of names drift in and out of popularity; but Jennifer was more than just a common baby name, it was a bona fide trend, a phenomenon. For a generation, it was almost impossible to walk into any grade-school classroom in North America without running into one — and probably two — girls named Jennifer, or Jenny or Jen.

“Jennifer is a case unto itself,” says Linda Rosenkrantz, who has been studying baby name trends since the ’80s. “The Jennifer epidemic came to signify a whole generation.”

And so, there were many Jennifers, or Jenns, in my life; so many that I had to differentiate which one I was talking about. “Jennifer that we grew up with”, “High school Jenn”, Camp Jenn, Roommate Jenn, Jennifer from church, and the list goes on. Over the years, the relationships with the various people we have met grew or wains, and I learned that some friendships/relationships are just for that time and place, while others are to last a lifetime. It does depend on you and the work that you are willing and able to put into it.

Facebook has been wonderful for me to renew connections that were lost. I was able to find and reconnect with people that I grew up with on the other end of the country, people from high school, college and work. As life has changed, we can choose who to remain connected to and at what level we want to be involved. Sometimes, life throws a curve ball and we can’t keep up due to our health, financial situation or other things, like moving, school, etc.

High School Jenn and I lost touch when I moved away. She is not one for email or any social media. Her husband used to travel for work and they both came here once. I would return to my parents and we used to sit and watch Survivor when her kids went to bed. She lost her husband unexpectedly in 2014. I was not able to be there for her at that time either. I only knew what was going on because of her sister being on Facebook.

Roommate Jenn and I met when I was living in Nova Scotia to get my masters degree. We learned that we are good friends, but should not live together. Perhaps we could do it now if we had to. She is now my best friend. We were each other’s maid of honors in our weddings. We have talked everyday for years, then we can go for a while without speaking and the relationship picks up where we left off. This is what a friendship is. We have talked frankly about everything – I mean everything; sex, religion, politics, you name it, we have likely dissected it. She lives in the middle of the country now, and I on the opposite end from where we both grew up. Throughout the past 20 years, we have worked to stay connected and supportive of each other’s struggles and journey; miscarriage, career changes, marriage, moving, and children. We joke that we will be together even when we are old and live in a nursing home, and we will be the trouble makers (still).

I met Camp Jenn when I was living in Nova Scotia to get my masters degree. One summer, I worked in a camp instead of going home to my parents’ place. She was the assistant director and accountant. I was the cook. Camp Jenn is dying. She is only 46 or 47, a few years older than me. She is on the other end of the country, and I have family obligations so I cannot go to see her. I can not say good-bye in person.

If I think about it, we were not as close as I would have liked. I missed her wedding as I had moved to Winnipeg by that point. We kept in touch and the connection remained. I made sure to grab a few minutes with her when I went back East in 2017 (2 years ago) so that she could meet my hubby in person. We have shared our trials and tribulations about what life has thrown at us; health issues with self or family, job loss, the trials of child rearing, the joys of photography, new careers, new family, the list goes on.

We are both ministers. We have both worked as ministers in our respective fields but are “retired” from that for now; me to raise a family, her to look after her parents. And yet, she is dying. Most of us on Facebook land were shocked to hear that she has cancer and that the chemo didn’t work, and that now they will do pain management and palliative care. She is only in her 40s. I worked in healthcare and yet, despite the joys and pains that I saw through my 15 years in the field of spiritual care, it is hard to see (or not physically see) someone who you know/knew well die, and harder still because she is still so young.

Late night conversations

My son has issues with anxiety. We can put him to bed at 8, and he is still awake at 9 or 9:30. It is frustrating to say the least. He will try to drag things out.

“One more story.”

“More milk.”

“scared of the dark.”

” scared of something that I saw/happened 2 weeks ago.”

bedtime

Well last night was no exception. First it was more milk. No, you’ve had enough. Then is was one more story. (2 downstairs as his reading homework, and then I read not 2, but 3 more upstairs.) Then has to hug the cat….. smh. Gets a book to read in bed. I leave, go downstairs to watch a show with my hubby. Over the next hour and a half, he was up at least 2 more times to tell us something. He was scared of the dark…. that comes from our room. “Well if you are in your room, then why is this a problem? you shouldn’t see it.”

*sigh Turn on the light then. go to sleep.” Put him back to bed.

watch another show. Almost done of show and hubby is talking to son about going back to bed.

“What is it now?” I ask.

Hubby looks at me. “um. He is upset that he can’t see Jesus and that he died.” You can see that hubby is slightly amused by this. We are both perplexed at where and why these thoughts come up when he is SUPPOSED to be asleep.

I go upstairs to see how to soothe my sobbing son.

“Let’s go back to your room.” I climb the stairs and find him sitting on his bed, sobbing while holding a book. It is the Children’s picture bible, opened to the scene of the Nativity.

“I’m sad that I can’t go see Jesus as a baby because it was so long ago.”

“Oh sweetie. I see. Well, we are all sad that we can’t.”

“and I know that he died. but I don’t think that he is r.. r… rose from the dead.”

“Why do you not think this?”

“cause people don’t do that.”

“Well, Jesus was God. People don’t do this, but Jesus was special because he was also God’s Son.”

“I feel better if I had more milk….”
Yes. I let him have more milk and sent him off to bed. He was soon conked out for the night.

“

Conversations in the car

This morning was like any other morning; my twins woke me up before my alarm went off which is also well before their “gro-clocks” told them that it was time to get out of bed. Twin A (girl) crawls into my bed, complains she is cold, and whispers (that I can’t hear because I have a hearing loss) that she wants to go downstairs and get her IPad. Twin B (boy) is not far behind, basically asking the same thing. I deny them, remind them of the rule of no IPad before school but they can go downstairs and I would be there soon to get them breakfast.

Despite the warnings about departure time, there is still whining and loud protest. Kids still don’t get their shoes on. Harass the cat with hugs.

finally get shoes on and we drive the short distance to school that is made longer with morning commuters and construction. (yes we could walk and get there in shorter time, but autism logistics and my nerves impede this.)
Boy: “I don’t want to go school.”

Me: “I know. You have told me this. But life is full of things that we don’t want to do, but we do them anyways.

I got up this morning. I didn’t want to do that.

I made your lunches. I didn’t want to do that.

I got hugs from you. Ok, I like that part.

but the whining and yelling part of the morning, I don’t like that part.”

I realize that part of this is that there are now 3 weeks left of school. I have asked, and other parents confirm that the whining has increased in recent weeks. Maybe part of it is being 7, so like a normal/typical 7 year old, they whine. And part of it is likely the autism brain that is protesting the demands on them. Both twins balk when demands are placed on them but react in different ways. The girl shuts down and says she isn’t smart, while the boy just gets loud and pouty.

There are a lot of things that my children don’t understand no matter how many times I repeat myself. I still can’t always tell what is them being that age and what is the autism.

Yesterday, our BI told us that when she had taken my son out to a social group that she runs, he had commented about his minecraft progress and stated that when things get hard, he gets his sister to do it. And all the kids in the group, who have now gotten to know both of my kids, said, “Really? L ? are you serious?”

This was an interesting comment because it shows us a different perspective about my kids. We know that our daughter is smart, but her autism impedes how she interacts. Emotionally and socially, she is 1 year or 2 behind her peers. She is more in her head and her head has a lot of rainbows, and fairies, and flamingoes. Definitely flamingoes. So of course, the group of 5-12 year old that she goes out with were surprised by what she can accomplish. She has very good spacial reasoning and builds some cool stuff in minecraft and with lego. Maybe that is her arty brain.

Maybe I need to change the title of this post. …

back to conversations in the car. I am hearing impaired. I have worn aids since I was 4. I rely a lot on lip reading. So my kids still don’t get that mommy can’t hear them from the backseat but she can hear the radio. (Radio is loud, kids mumble). So it is hard to have conversations in the car with my kids (or most people). I worry that my kids will not understand this, ever.

Don’t screw this up

So i’m finally back after a month. It’s been a busy month but mostly with anxious anticipation as we wait to hear what support hours will be assigned to my children for next year. If they went down, we were planning to pull them out of public school and go the route of Directed Learning. This is apparently different from homeschooling, but is a form of home schooling nonetheless.

I was told yesterday that their hours will stay the same as this past year. They barely have 20 hours a week of support at school. This means that regardless of the fact that they have the G designation that there is a slim chance of getting a qualified person to take the position. My children are approved for ABA Support in school, vs an Education Assistant. This means that they would get a person who is specifically trained to work with autism and not just someone who is trained to work with everything. My children need redirction regularly during the day. We joke that my daughter is easily distracted like the dog in UP (Squirrel). And while they are doing better than they were in kindergarden, they still need the support or there are problems. Outbursts, flopping on the floor, hitting, elopement, and the like.

It seems that the behaviors are getting worse this past month. I have mentioned this to other parents and they agree, so maybe it is just the time of year and not just me and something I am/not doing.

So now I have to trudge into the world of advocating for my children. I hate this. I’m not good at it. In general, I am the type of person who is loud and says too much, or I’m timid and say nothing for fear that I will stick my foot in my mouth as the loud one (or inexperienced one) and thus muddle things more, causing more problems for my kids and their school experience. Nonetheless, there have been facebook posts alerting us that although the principals only got the hours given to them on Monday, that there is only 2 more days (Friday) to request more hours.

There is a chain of command for how and who you request stuff with the Surrey school district and I don’t want to screw it up. So I have trudged in….

Egg- stra worth remembering

I was just cleaning the kitchen and there remnants of child proofing measures on it (which are hard to get off) that were left by the previous owners.

We had to secure the fridge as well as my children LOVED to open the refrigerator and look inside. I think that we had to secure it differently after I dicovered that my daughter had taken an egg and cracked on her brother’s train table. I was not impressed. Cleaning an egg off the floor is one thing, cleaning it off the table that has tracks and trains and a painted surface is a whole other story. The thing is that this is just a story to tell her later in her life as we recount the crazy things that my twins have done. egg