Judgement and autism

Let me begin by saying I consider myself a fairly strict mother. I expect my children to obey me, and to obey their dad. Does this mean they do it 100% of the time? No. They are children. They are learning. I also expect them to treat each other with respect and love, to clean up after themselves, not to complain about the food I put in front of them and to be thankful they HAVE food in front of them, and so on. Again, do they do this 100% of the time? Of course not. They are children. Children who are (mostly) still very young and learning.

In our society, there are SO many people who seem to think children should behave perfectly and get mad at them and judge their parents when they do not. I find this highly annoying.

I have an autistic daughter. I most likely also have a (very mildly) autistic son, although he has no official diagnosis at the moment. I then have an almost three year old who copies everything these two do. They are also at "hard" ages, ages where they are still learning a lot and obeying is not high on their priority list.

Lets give a basic example of our new bedtime routine.

*To give a little background on the change in bedtime routine and why this is such a big deal to Naomi, up until this last week Ruth and Naomi have been sharing a twin size loft bed in our room, but we decided it was time to graduate Naomi to the "girls room" and for Tobiah to get his own room, so we're moving stuff around and completely changing an already very difficult time of day for Naomi.

Tonight I found myself posting on Facebook about how I wish Naomi would fall asleep faster, and wished that Rich had not made it part of the bedtime routine that he be in there while she falls asleep since it will be very hard to break her of this. I found myself feeling the need to explain and even justify why it is "normal" for this to be an issue, and to explain why it is nobody's fault that changing routine is hard here. For an autistic child, routine is VITAL. They cannot function without one, and changes to the routine are taken very hard and take weeks, sometimes months, to readjust. This is "normal" for autistic children. Yet I realized that by me saying "I wish she didn't take so long to fall asleep, and I wish this wasn't going to be a pain to change later" that I was opening myself up to ALL the comments of "you're the parent, just don't do it!" or "it is only hard if you allow them to run your household".

This stuff flat out makes me mad. Did you all know that 1 in 88 children is on the autism spectrum? Did you know there are studies that point to the fact that it is even more common than that? Yet until you are the parent/primary care giver of a child with autism, you will never understand. Never. I do not care if your niece/nephew/grandchild/brother/sister/etc is autistic, although clearly those relations gives you a much better understanding of the dynamic than the general public, it takes being the one actually caring for these precious children day in and day out to truly understand what a challenge (and blessing!) it is.

Naomi is exhausting. Day and night. She is four now, and still never sleeps through the night. You heard me folks, never. I will admit that I am no longer the one that gets up with her (or the others for that matter) at night. I reached my breaking point about two years ago, as I suffer from extreme insomnia and have a LOT of trouble going back to sleep once fully woken up, and to top it off require more sleep than some. So yes, I make Rich do that part. He gets it. He understands how difficult she is. He understands the daily, hourly, sometimes every other minute tantrums that can last anywhere from 30 seconds (if we are VERY lucky) to 5-6 hours. Yes, 5-6 hours straight. I think Naomi's record for a non-stop tantrum with top of the lungs screaming the entire time was just shy of eight hours. Confession, there were a few points during that tantrum that I put her in her room, went in mine, closed the door, and prayed God would help her fall asleep so the screaming would stop. That tantrum was over two years ago and I remember it perfectly. That was the longest, but that type of behavior is common place in our house. I spend a good deal of my life redirecting Naomi. Explaining things to Naomi while she screams in my face. Telling her no calmly over and over while she screams at me and calls me stupid and "baby" (my children's version of the worst possible name you could EVER be called). Standing my ground, even though giving in would be easy. Naomi is like having ten children all in one. I don't like to focus on only the bad sides of autism, and Naomi is also the sweetest child who teaches me to live life in a beautiful way every. single. day of my life, but I want to give you an idea of what living with an autistic child can be like.

Now, when we change Naomi's routine is one of the biggest triggers for these tantrums. So think about that, at bed time, when I am worn out and ready for a break and just desperately want the kids asleep. Yeah. That right there? That is why I wish he had not included that in the "transition routine".

Naomi is not a bad child because she throws fits and doesn't listen hardly at all. She has many amazing things, even. Did you know that Naomi doesn't lie? Seriously. She doesn't understand how to lie. She's a sweetie. She is also so stinking awesome, something can be lost, we'll have no idea where to look, and she will know exactly where it is. How cool is that?! Granted she never knows where important things like keys are because she could not care less, but her favorite toy? Ruth's favorite toy? Yeah, we can count on her. Heck, the other day she kept insisting her new puppy was "in the couch", and we didn't really believe her. Guess where he came out when he woke up? Yep, out of the couch. Naomi is awesome, and I love her. She is exhausting, but she is worth it. She is loved. She is most definitely not a "bad" child just because she has a very hard time listening.

Likewise, Rich and I are not bad parents because she does not listen perfectly. We love her. We go so far out of our way to be good parents for her. Rich has gotten up in the middle of the night to put "medicine" (Vaseline) on Naomi's eczema. I've literally put my life on the line for that child (yeah, ask me about that one sometime). We do not take the easy way out by giving her what she wants. We are training our child to obey. She is just special and learns differently, responds differently, has special challenges (especially socially), and will likely grasp all this far slower than most. We are preparing her to be a functional member of society, autism and all.

So please, next time you want to say something to be about how easy it would be if I did things the "right" way, just do me a favor, and don't.

When did this happen?!

Today I kicked all the bigger kids outside, then sat to play with Jeanette since she was longingly watching them out the slider door. Sitting, watching how she moves around, watching her be silly, it suddenly hit me... she's a kid!

What?! When did this happen?! When did my sweet little baby turn into another little stink pot kid?!

I realize I've been so sick and busy the last month, but sheesh! I wasn't ready for this one. I wanted her to stay little and sweet a bit longer yet, and really, since she is my first delayed walker (I still owe you all a blog on that one, maybe later today), it just seemed like she would. I mean, they aren't kids until they can walk! (And for my kids a while after that typically, since sweet little Ruth walked at nine months!)

As I have been sitting here typing this, I have seen even more examples of what a kid she is turning in to. I brought her upstairs with me (obviously) and set her on my floor. She crawled right over to the closet entrance and grabbed a couple "guys" (Imaginext people) and stuck them in the driver and passenger seat of Dora's camping van and made little people noises for them. She was pretending they were driving! When she (rather quickly) lost interest in that, she wondered into my bathroom, which I was fine with until she started getting into stuff. I told her "Jeanette Helen, come here!" and guess what?! SHE DID! Wait, what?! My BABY is LISTENING?!

So, there you have it. Until July, this Mama is baby-less.

Baby update!

Today is the day for blogging I guess. I have a lot more blogs in mind, but don't want to post ten in one day, so hopefully later this week...

I have had a few more ultrasounds, and our newest baby has continued to grow and appears to be doing very well. The SCH is still very much there, and I have continued to have occasional spotting. Baby is very active, but I'm not feeling a lot yet, which leads me to suspect my placenta is currently in front. This would be a good thing, actually, as I had an ultrasound at 14 weeks 1 day that showed it over my cervix, and without it moving as baby grew, that would be an automatic c-section, exactly what I do NOT want!

At that same ultrasound, I got a very good look at Baby, and am quite sure baby is a GIRL! We have not actually been told this yet, but after four girls I kind of know what I'm looking at. Tobiah was crushed at first, but I explained it meant that he continues to get to be special because he is the only boy. In his words "well, I guess it is a good thing, because if the baby was a boy, he'd steal all my boy attention!" Such a silly guy I have! I also reminded him how deeply he loves all three of his younger sisters, and promised him he would love his new sister just as much. He still longs for a brother, so perhaps next time. Maybe. ;)

I am hoping that by my 20 week ultrasound the SCH will have resolved, but it was still very, very evident at the last one. We shall see! My midwife has not made a big deal of it since seeing the last report, so I think I'm in the clear for a homebirth regardless, assuming no other complications come up.

I am definitely already nesting. I've been sick with one thing after another, though, and it's just been hard. Rich is home today as is our tradition for the kids' birthdays, but we decided to stay close to home today. Planning on a trip to the park soon, other than that I am hoping to get the house wiped back into shape.

Anyway, yay for more pink! And even more importantly, yay for a healthy baby! :)

Happy 4th birthday, Nae-Nae Dawn!

Funny side note. Some time ago, I want to say last summer, Tobiah was upset with something that Naomi had done, and in this super serious voice said "uh-uh Nae-Nae Dawn!" We laughed about it for weeks.

Dear Naomi,

Today you turn four! I can't believe it! What an amazing roller coaster the last year has been with you. We have had some lows, but we have had many highs! You have grown, learned, and changed in this last year, and I am so proud of you, and so proud to be your Mama.

Shortly after your last birthday was when we had my suspicions confirmed and you were given an autism diagnosis. Naomi, just because you have this challenge, does not mean there is ANYTHING you cannot do! You have spent the last year proving this baby girls, and I am so proud of you!

Your speech has improved so much, most people can understand you now. You have started stuttering a bit, and honestly sweetie, I hope it sticks around for a while. I find it so enduring.

You have continued to work on being adventurous with eating, and we found a food you absolutely LOVE that kind of surprised Daddy and I-Chili! You still have days where I'm not sure how you survive on how little you eat, but that's ok, you are growing big and strong. You love plain celery (you like to be a Wonder Pet) and will eat carrot after carrot, cut up or not. Your favorite is homemade mac and cheese, just like Mama, and that is exactly what we are having for dinner tonight.

You have learned so much in the last year, too. You know your colors, you are starting to count, and just yesterday you sang the ABC song perfectly.

You started preschool in December, actually on Daddy's birthday! You are doing very well, you are learning to interact with the other kids, and Mama and Daddy are SO proud of you! You love going to school, and love riding the bus.

You also love dinosaurs. You have for a while now, and it all started from the Land Before Time movies, yet I am not so sure you have ever even seen the original as they do not have it in a digital form, and we are mean parents and haven't bought the DVD for you. We really should do that sometime. ;)

A week and a half ago we brought Zeke home. He is your puppy, and our plan is to train him as your therapy dog. He already helps you calm down a lot, and I love watching you with him. You are a little rough, but he loves you anyway. Soon enough he'll be big enough that you won't be able to harass him quite as badly.

Lets see, what else have you been up to lately? Hmm. One thing we are working on is how we talk to others. When one of your siblings (usually Tobiah, occasionally Elli or Ruth) is bothering you, I remind you to go ask them nicely. You always bark out orders at them, and honestly hun, it makes me laugh to myself. You know what you want, and you are determined to get it! While I will be so proud when you master how to speak kindly to others, I honestly think I will miss this sass you have! I hope it never completely goes away, but that it manifests in a more appropriate area.

Did you know that your name means My Joy? Naomi, you ARE my joy! You make me smile every single day! You are the sweetest child, and you fill my heart in a very special way. I love you, my sweet, special, precious child! I love your tender little smile, your big beautiful brown eyes, your gorgeous hair. Naomi, what I love most about you is the beauty that is inside of you, that sweet, loving, spunky little girl that shines through in a special way. I am so, so thankful God has entrusted you to me! I am so thankful to be your Mama! You make me SO proud, you bring constant joy and laughter, and you help me to see the world in a whole new beautiful way that I never imagined was possible. Life through your eyes is beautiful and unique, and I'm blessed to be able to experience a small level of it.

While I look forward to watching you grow, learn, change, and become the amazing women God has created you to be, I hope some of these things never change. I hope you keep that special innocence I love, I hope you continue to see things differently-beautifully!

Naomi, you are so special, you are so unique, and I am blessed to watch you grow. Happy birthday to my "queen".