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Life with Autism

Ever have those days when you think you are finally turning the corner? Finally getting the hang of things? Life has calmed for a bit and then, autism rears its ugly head. Or maybe it is just parenthood, I don’t know, these are my first and only children.

Lately, our son has had issues at night. Specifically, bedtime. Yes, I know that every child tries to delay the inevitable, going to sleep; heck, I’m sure I had a few antics up my sleeve at that age. There are times when I can’t tell is autism and what is normal childhood issues. My son has OCD as well as autism. This manifests itself in a rigid resistance to change. (I suggested that we go on a fun trip, maybe to Disneyland. He replied no, because 1. he has to get in an airplane, 2. it would take so long to get there 3. “I don’t like costumes and I would hide behind my mom.” [This last one is a funny statement, because he was speaking to me…. about hiding behind me.] So even though his twin sister would love the experience, and try to squish the life out of all the characters, this is a trip for the wishlist.)

Often after he has been put in bed, we will hear from the top of the stairs, one of the following; “I’m scared”, “I was thinking of places that I love that we don’t go to anymore” (with tears), “I thought of something creepy”, “I thought of something scary”. His father gets more aggravated by this than I do. Our response is “what would you like us to do? it’s your brain.” He usually just wants a hug, which is fine. But then he starts to talk, and then it is 10 or 15 minutes later. Or he wants someone to come with him and rub his back. This is hard for me because of a number of things; He is my little boy (yes he is 8, but he won’t be soon.) and he will only be little once. I recall the memes about “cherishing the moments” because they will soon be gone, or is it you want them to remember you and their childhood well, and then I feel conflicted. Do I “coddle” him in this or do I draw the hard line and send him off? He has to learn to deal with this himself as I will not be around forever.

So my ABA home team says to ignore and send to bed, but the mother in me says to be gentle with him. Don’t want to scar him for life, especially given his anxieties. *sigh

These “I’m scared” or “I’m thinking of..” moments have been happening more regularly these past weeks. Is it just because, as the school principal mentioned in a meeting yesterday, that this is the time when a lot of kids unravel, or is there some other stressor that I need to look for? The fact that he has anxieties (associated with the OCD) doesn’t help. I have read in a lot of my facebook groups about some ASD children needing medications for their anxieties, to help them process, or sleep. I hope it doesn’t come to that because neither of them will barely take something for a cough, let alone a daily dose of anything.

Last week, my child was sobbing in my arms because he was afraid of becoming an adult because he didn’t want to leave our home. In fact, my birthday card from him said just that. And ONLY that. “I love you and I never want to leave our home.” I had to console him and tell him that we aren’t planning on making him leave. Some people want to leave and do so at age 18, which for him is another 10 years. I didn’t leave my parents house (FINALLY! as my father would put it, after my coming and going from schools) until I was 28 and moved here to BC where I have been ever since. So that is another 20 years. You might feel differently in 10 or 20 years, but you are welcome to stay here as long as you need.

Such big thoughts from a little man.

I measure every Grief I meet ..

I have been reading a bit since the start of the year and have finished book #3 of 4 that I picked up from the bookstore. The last book was called “The Two-Family House”, a debut novel by Lynda Cohen Loigman. I won’t do a review here but wanted to talk about a passage that I found in the book on page 183. In this scene, an older aunt is talking to a eight year old girl. (from a poem by Emily Dickinson) page61-1024px-Emily_Dickinson_Poems_-_third_series_(1896).djvu

“… I found a special poem that helped me feel better. … I don’t remember all of it, but the first part goes like this.” Aunt Faye cleared her throat and closed her eyes. “I measure every Grief I meet, with analytic eyes — I wonder if it weighs like Mine — or has an easier size.”

“I don’t understand.” (eight year old)

“It is difficult to understand, isn’t it? Of course everyone has their own ideas, but I think it means that everyone has some sadness in life. Maybe someone they love is sick or died, or maybe someone they love did not love them back. Maybe they don’t have enough money for something they really need. For me it was that I couldn’t have a baby. But for another person the grief could be something different. Something they wish they did or something they wish they didn’t do.

We always think our own grief is the worst — worse than everybody else’s. But the truth is, we never know for sure what the people around us are feeling. I have had some bad things happen, but then a lot of wonderful things happened to me too. An awful thing happened to you yesterday. But you mustn’t let it ruin the happiness that lies ahead for you, dear.”

This passage stuck with me as a reminder that as individuals, it can be hard to share what is in our head/heart. Grief is not just related to death, but also to loss. Death is hard for a lot of people to focus on because it is the final loss. Once someone is dead, there is no coming back, no replay, no next time. What we have done or said is how it is and we can’t change our relationship with that person. The impact that they made in our life is still there, but it is missing from our world now and we can’t get it back.

Grief also comes from considering the losses of life; the loss of hope, a dream, a change of plan. When one is ill, we consider all the things that we cannot do or how life has changed “from before”. Physically we are not able to do things, must change our eating habits (diabetes, heart conditions, etc), and our lifestyle must change. The same can be said of parenting. When my babies were born, it was the greatest joy. When I was told that my newborn daughter had a lifethreatening heart condition and she needed risky surgery, I was terrified. When they told me that not one, but BOTH of my twins had autism, I mourned. My grief focused on the loss of a dream. Now some parts of the parenting dream had to change. The stigma of them being “different” meant that there were/are likely some things that they will not achieve. Can they join a team and play sports? Can they become a star athlete? a president? a successful worker? I had to let some dreams die. I had to let the dream that I could go to parent groups and relax, and be an average soccer mom.

The main point of this passage was We always think our own grief is the worst — worse than everybody else’s. But the truth is, we never know for sure what the people around us are feeling. As a person, we can be self-focused, or inner focused and lose perspective. The fact that something happened a certain way has affected me this way, or the fact that something didn’t happen can affect me a different way.

When death occurs, people often don’t know what to say. When I was working in healthcare, my speciality was grief related to chronic loss. (Geriatrics, dementia, and renal diseases) I was often asked to give talks about grief. I remember being asked about what to say or do. I responded with “I’ll tell you what not to say, don’t say (platitudes. I hate the platitudes) “it was his/her time”, “they are better off now”, “they are at peace, no longer suffering from their illness”…. and especially, don’t say “I know how you feel.” Yes, your dad died and my dad died, so I know what it is like to lose a father, or yes, our children both have a heart condition, or both have autism, so we can share our experience, but I will NEVER know what is like for you, and you will never know what is it like for me. The relationship that I had with my father is likely quite different than the one that you had with yours. The impact of their life and now death will be felt differently.

The fact that we may share the experience of raising special needs children means that we understand some things that others do not, but I can still never know what it is like to be you, raising that child, and vice versa. I think that as long as we are open to sharing and hearing what the other person is telling us about their experience, that is where we can be together in the experience. That is how we support and tend to each other. When we become so wrapped up in our experience that we let it dictate our view; narrow our focus and thus shut people out, that can be a problem. The support that we reached out for will not necessarily be there because we are not able to hear the other people, to accept what they have to offer. Granted, there are times when we will not be able to “hear” what someone else has to offer, (like when the crisis first hits) but over time, this is something that we should strive for. Supprting each other in our lives but never assuming that we fully understand what it is really like for that person.

Okay. Enough preaching. I’m off to go do parenting.

New Year!

New Year! New possibilities! New resolve! Let’s see how things go.

I haven’t posted in a while as I have been busy being mom, doing geneology and access to this is on the “other” computer.

So the twins have been in grade three and seem to be doing well, for the most part. I have joined the PAC (something I said I would never do because I don’t. have. time!) and it has helped me to get to know more about the school, politics and meet other moms. All of which are good.

My son has a pending bronchoscopy as he seems to get croup whenever he gets a cold, and my daughter will have a heart cath to stretch her stent so that we can get her to grow a bit more before we put in a larger valve replacement. They just got back from a week with the grandparents and I used that time to rest, and clean out parts of the house that we normally don’t look at. Convenient or coincidentally where we store a lot of holiday decor. Made hubby clean out and sort a lot of electronic related things and we gave about 5 bags worth to the recyling centre, as well as bedding, etc.

Daughter still has food issues and was even off of her favorite; apple sauce. Why? Because she had found a piece of apple peel in a fruit cup and swore off the lot. It took a while to coax her around to eating them again. We still have meltowns about Kraft Dinner and she is a declared vegetarian (who won’t eat much fruit and no veggies). *sigh

We went to some holiday outings; saw lights, saw Santa, had photos etc.

There have been a few bumps in the road here and there but overall, smooth sailing.

We shall see what 2020 brings. Federal autism issues, provincial funding model changes, possible World War 3 (Trump), and continued battle of the bulge.

Connecting the pieces … still a work in progress

Last week was parent/teacher interviews. School has only been in session for 4 weeks with the children being in their assigned classes for 3 of those. So it is a bit early for a “this is how your child is doing, let’s fix this” and more of a “let me tell you what you need to know about my child to help them succeed” chat.

One thing that the teacher told us is that “we (the teacher and EA) are starting to figure her out”. The example that she gave was about my daughter’s creativity. L loves art. I mean LOOVVEES art. The teacher told us that L made a ghost and the other kids in the class were impressed and started to copy her. When it was pointed out to L, she didn’t connect. They told her “Look! Look what you started! They all made what you made.”

It wasn’t until they took one student to her with their ghost and said “I liked what you made and I made one too. How did I do?” that L started to get it. But she is still working on connecting the pieces and connecting to the other children. It is interesting to see this piece and to have words to explain what her father and I knew about her.

(She used the empty apple sauce container from her lunch as the “form” for her ghost.)

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.