Twins – That ASD Mom

The Struggles Continue

The struggles continue. We have started them on meds for ADHD and now I have to find some form that both will take for other meds; melatonin and iron. Iron is for the girl as she doesn’t eat meat (or fruit, or veggies) and the doc worries that she may be anemic. Not a good thing for anyone, but especially with her heart condition.

Melatonin is for both, but mostly for the boy who has anxiety issues and is back out of bed at least 3x a week. He will come down and say that he is scared and the reasons range from a video he saw, to worrying about death and dying (what will happen to him if I die, worrying about the aging grandparents…) and the new one is worrying about his sister as she doesn’t finish all of her food some days.

*Sigh. Let mommy worry about that, and you worry about getting enough sleep so that you aren’t grumpy or sleepy at school tomorrow … is usually my response.

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Our province is also going through a period of rain storms that have caused flooding in the main farming area of our province. Many have been forced from their homes and need to rebuild only to have more rains come. Stores are empty in areas due to stocking and access issues. Gas is rationed. Borders issues with the States. The list goes on.

In the midst of this, I have actually put up the Christmas decor, which is a significant feat for me as I usually don’t like it, don’t want anything to do with it, … I tolerate it and the commercialization of the season. I guess this year I needed something to look for , to hope with. Despite my child’s greed about presents, we have determined that our kids have too much stuff and there will not be an abundance of gifts this year from us or Santa. We figure there is enough from grandparents, etc to add to the piles.

Hubby has asked if he needs to buy something for me or if he “has already done this” *wink (meaning have I bought something and told him that was what he got me). I told him, you got me a new TV so there is that. I was getting annoyed with squinting to read the subtitles from the other end of the room, so we got a bigger screen and it is a smart TV, so it now has only 1 remote instead of 2, and more apps on the TV whereas we had the Firestick (amazon) in the basement where I hardly went. I have discovered shows that I watched in the 80s or have wanted to see but didn’t have the time or platform for it.

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There has also been protests at the BC legislature about changes to the funding for special needs. Currently most autism funding is through the BC gov’t from the Autism Funding Unit. There was an announcement about funding changes to create hubs instead of the current direct funding we currently have. AFU should be increased in amount has been a long said critique. Instead, BC has decided that in order to provide access to services for the various disabilities, diagnosed or otherwise, they will pool it all into hubs. This model has been used in Ontario and has been criticized for increasing wait times to gain access to services. My issue is that information is vague; no budget listed, no information about WHO will determine WHAT services are to be provided, or their credentials to make this determination. In trying to help the masses, I worry that they will hurt more than help. So to that end there have been protests and one will be on December 3, the International Day of Persons with Disabilities. I’m torn. I know that I should go. I also have been thinking that I should join the letter writing campaign (to my MLA) about this, but frankly I have little energy for all of this. I’m trying to put my finger on it, but it is reminding me of when I was working in healthcare and they talked about the demoralization of the staff. I think that is it, or the closest thing that I can think of to describe this feeling. The fact that I have to fight so hard for basic access to things that have been deemed essential or fact. It takes so much energy to advocate for things, and it is so far out of my comfort zone that I worry that I will make a horrible faux pas and thus screw my chances (and my twins’) for getting what services are needed.

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.

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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.

Birth Journey continued

On my way to have babies

My little munchins together in a crib for the first time in a crib. About 5 days after birth

So off I went to have babies at 5 a.m. on a Sunday morning. I went off to have a C-Section. I missed out on the “first photos” after birth as the twins were rushed off to the NICU shortly after dad cut the cord. I was sent to recovery, where I had one of my former nurses clean me up and look after me. That was weird. Being a patient in the hospital where you worked for 8 years is weird.

Twin A (L, the girl) was born at 5 lbs 1 oz, while Twin B, (M, the boy) was 6 lbs 1 oz. I called my friend early in the morning before she left for church and told her that she should think about coming down the block to visit us. She apparently ran into the choir room shouting “the babies are here! the babies are here!”, or so I was told by the choir director. No one needed to be told which babies she was referring to, and it was announced from the pulpit. (I was later told by one person that when he heard the weight, he hadn’t realized that they were preemies, because frankly those are good weights.. understandable, I was a house trying to move the last few weeks.)

We had a stay in the NICU of St. Paul’s because they were preemies. At the time, there were 2 other sets of twins born as well. During our stay, we had up to 5 sets in the NICU for a brief period. Alas, my twins had to split up shortly after being freed from the incubators because the doctor detected a heart murmur. And so it began, Twin A was sent with dad to Children’s hospital for an echo, while Twin B (the boy) remained with me at St. Paul’s. They were gone all day. He phoned me to tell me that she wasn’t allowed to come back because her echo wasn’t good. They needed to do surgery. In the end, she was diagnosed with Aortic Valve Stenosis. This was explained to me as the aorta has 3 valves that are supposed to open when the blood goes through, but her heart was only opening 2. So blood had to be pushed harder to get through. This can strain the muscles and make the heart work too hard.

In the end, we spent a nerve-wracking day, October 7, 13 days after they were born, and 4 days before the original C-section was scheduled, waiting to hear if our daughter was ok. She had an angioplasty, which is essentially the “balloon thing” that blows a valve open. Unfortunately, she was so little, that it permanently blew her valve open and so blood flowed undeterred, meaning good blood and uncleaned blood mingled and this would have to be fixed later.

So we were introduced to the Cardiology department of BC Children’s Hospital and my little heart warriors began their journey with a crash course for us parents. I called my colleagues and told them to come wait with me. It is also strange to become a patient on the receiving end of the work that you once did but thank God for the people that I knew, that I could call on for support.

For the next 2 weeks, I went to St Paul’s in Vancouver for the day with Twin B, learning how to feed him, hold him, scared I would drop him; and then late afternoon, I would go to Children’s PICU to see my daughter. By then it was a long day for all of us, and there were some not so nice comments from a couple of nurses. I complained about one as she basically said that I was never there, and they wouldn’t release her until they knew that I was a fit parent to take her home. I did NOT need that, thank you very much. Not only was I stressed about becoming a mom, I was also dealing with 2 babies, — 2 babies in separate hospitals — one having just gone through a life-threatening/life-saving procedure. Learning a new hospital system and a new world (maternity wards, milk banks, breast pumps) was also stressful. It was actually 3 days post-surgery that I timidly asked if I could hold my daughter. She was hooked up to cords and tubes that I was scared it would interfere with her healing. The nurse looked at me with shock and surprise that I had yet to hold her since her surgery. Sat me down in the rocking chair next to her bed and placed her in my arms. It was all I could do not to cry as she was so small.

Twin B was released from the hospital on October 19th and we took him to see his sister. I was told that putting them in the bed together was encouraged as supposedly sensing the healthy one would help the recovery of the sick one.

After she was released from the PICU and sent to the ward, I put them in the bed together. I remember a nurse coming in to take blood and she literally did a double take. “There’s 2!?”

“Yes.” I said.

“Well, which one is the patient?”

“Um… the one with the tubes coming out of her.” I said, awkward smile.