Autism question

During a school project my class wrote down questions about having autism for me to answer.  I decided to post the questions and answers on my blog as well.

Q: How do you feel when you are in a large group with many noises?

A: It depends.  I have a large extended family and family get togethers can be really loud and crazy, but it doesn’t really bother me.  If I am really comfortable with all of the people there, can choose how much I am participating, and have the option of stepping out for a minute if I need to it is not bad, and I can even have fun.  If I am trapped there or there are people that I do not know, and especially if there are other sensory things going on like flashing lights, I can get really anxious and have a meltdown.  It also depends on how long I am there.  Some things that would be too difficult for me if I was there a couple of hours are fine for half an hour.  Also, it depends on where I am in the group.  I do better in corners or on the edge of the group so the noise isn’t surrounding me, it is just on a couple of sides.

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FHE on prayer

In our church we have been asked to set aside one night a week as a family night, we call it Family Home Evening, shortened to FHE.  Different families do different things during this time.  Often there is a lesson, sometimes an activity, sometimes a service project, often a snack.  As Mingli has been getting older Kaanas and I have decided to make FHE more of a priority, so we have started planning simple lessons to teach him.  Tonight we had FHE about prayer.  It was very, very simple.  We told him that when we prayer we are talking to Heavenly Father (who was the subject of our last FHE lesson), that we tell Heavenly Father what we are thankful for, and ask for what we need, then end the prayer in Jesus name, and say amen.  We told him that when we prayer we fold our arms and close our eyes.  That was pretty much it.  That was also as long as his attention span lasted.  Our lessons are really simple right now, but as we teach our son these things I can feel the Spirit in our home, and I hope he can as well.

Grieving the loss of more kids

I have always wanted a large family.  It has been my dream for as long as I can remember.  After Mingli’s pregnancy Kaanas and I decided that we wouldn’t have as big of a family as we had been planning, but we were still planning on having a few kids.  Now, after what happened with Iella’s pregnancy, we don’t think even that is possible.  I honestly don’t know if I can make it through another.  Every time I think about getting pregnant again all I can think about is the fact that if I am not strong enough to make it through I will miss Mingli and Iella’s lives.  There were moments during Iella’s pregnancy where I was truly afraid I wasn’t going to be there for Mingli’s 3rd birthday, that I wouldn’t get to see him in his dinosaur costume, or get to help pick out his Christmas presents.  I want to see my children grow up, and I want to grow old with Kaanas.  But at the same time I am mourning the fact that I will never have another newborn.  Iella is already a month old.  I will never do this again and it makes me so sad.  I keep going back and forth between crying over not having anymore kids, to crying because I am so scared of being pregnant again.  I know it will take time to process all of this and learn to be ok with it.  I am trying to remind myself that it is ok to be sad.  Eventually I will be ok again.  There is so much I am trying to process and work through because of this pregnancy, this is just one of those things.

1 month!

Iella turned 1 month old this week!  This was also the week she was supposed to be due, which is funny.  Iella had grown so much in the past month.  She can hold her head up for a couple of minutes at a time, and a couple of times has even lifted herself up on her elbows while laying on her tummy.  She has been smiling since she was a couple of days old, and has laughed in her sleep a few times.  She is starting to get really interested in what is going on around her and if I hold her in a sitting position she will start turning her head everywhere trying to look at everything around her.  She loves to cuddle and if we are laying in bed she will scoot over as much as possible so she is cuddled right up next to me.  I love her so much and am so grateful for her.

How my mom feels

At Mingli’s doctor’s appointment he got a couple of his vaccines.  After dinner recently this came up because Mingli wasn’t feeling well and my mom mentioned that it might be because of his shots.  My family is mostly pretty anti-vaccine, and some of them didn’t even know I was getting Mingli vaccinated, so instead of this being just a little comment it turned into a whole discussion about vaccines.  It was mentioned that President Roosevelt was in a wheelchair because of polio, and my mom said that yes, he was in a wheelchair, but he didn’t have autism (she firmly believes that vaccines cause autism).  Her tone sounded like she thought being in a wheelchair was preferable to having autism.  This was really hurtful to me, because she knows I have been diagnosed with autism, and even more so because she knows that we suspect Mingli has autism.  It felt like she was saying that she would prefer I was paralyzed than be the way I am.  It felt like she was saying that having autism was this awful thing.  I know many people feel this way, but to me autism is just part of who I am.  I have worked hard not to feel broken because of the things that are difficult for me, and it was hard to hear that my mom might still see me as broken.  More than anything I do not want her, or anyone, saying that kind of thing around Mingli.  If he gets diagnosed I never want him to feel broken.  I want to help teach him coping skills, but I want to teach him that his brain is just wired differently, but that is the way God made him, and God made him that way for a reason.  I just feel sad that my mom feels this way, and I don’t know what to do about it.

Independence

I have been thinking a lot about what we expect of babies.  I have heard a lot of advice about what I should be doing with Mingli and now Iella, and some of the advice is things I should be doing so my babies can be independent.  I do not believe in letting my baby cry, I co-sleep, and I do other things that I have been told will lead Mingli and Iella to being too dependent on me.  This has made me doubt my parenting style.  Recently, however, I have realized something.  Babies are supposed to be dependent on their caregivers.  They cannot feed themselves, they cannot do anything if they are cold, hot, wet, or hurt.  They need us.  Why do we expect independence from babies who cannot even hold their own heads up yet?  I’ve decided that infancy is a time of attachment, where I will be with my babies and make sure they knows I love them and that they can trust this world.  Toddlerhood is a time of growing independence.  Mingli has entered this phase and I have begun teaching him how to sleep by himself, make his own food, dress himself, and start developing the skills he needs to be truly independent.  My kids will learn these skills only after they has learned that I will always be there for them, that I love them, and that if ever they needs help I will always come.

Doctor’s appointments and referrals

Today was Mingli’s doctor’s appointment.  Poor little guy had no idea what was going on.  He didn’t like having his head measured, or people looking in his ear, or any of that stuff.  They did let him play with the tape measure, which he had a lot of fun with.

At the appointment we talked about Mingli’s development. I have been concerned for quite a while with Mingli’s development, mainly his language development but also his emotional development and his sensory processing.  I talked to the doctor about this and she gave him a screening test for autism.  The test results came back at risk for autism, which is what I was expecting.  They put in a referral for more testing so we can figure out for sure and get Mingli therapy if he needs it.  I am relieved that this process is finally started.  I have been worried for some time and now I will finally get some answers.  I am not scared of him having autism, but I am worried about how a diagnosis will effect him.  It is something Kaanas and I are going to have to figure out because I do think getting him help with coping skills is important.

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