Minnesota Autism Mom

I am so tired of the bed time war between me and my son. I just put him back in his crib. I am so tired of being tired. Nap time is now a ride home and sitting in the garage until he wakes up. It’s pathetic. He needs to nap so badly, but will not do so any other way. I am completely lost on how to manage some of this stuff some days. I know I am not the only one.

I wasn’t going to write tonite, but I am feeling a little emotional the last 2 days. I think it’s official, I think it has to be so our son understands he has a new bedroom/ a new bed…the crib is over. Last night we took the twin bed apart so that there is just a mattress on the floor. I laid down beside him and told him to go to bed. I stroked his hair, I rubbed his arms, I sang some songs and then he closed his eyes to fall asleep. It was beautiful. I am typically only privy to this in the car. This is after he screams and cries and then falls asleep in total exhaustion.

I made a decision after leaving his ECFE class on Tues. Another mom spoke up about bed time issues and I listened carefully to the teacher gently suggest that naps may be a thing of the past. I heard her talking to me as she said giving up nap time is hard on us, not them. I went home and made a decision that all of the fights to take a nap were his way of saying “mom, I do not need this”. As I refused to listen, the bed time kept creeping from 8, 9…to finally 10:30. I was wearing out before him. Going to bed the minute he was put in his crib. I was done. He was done. 10:30 is too late for a 2 year old. Even a 2 year old that is about to turn 3.

Making bedtime 6:30/7 pm is something I sort of want and don’t. 7 means he won’t be seeing daddy at night anymore. 7 means weekends where we would go shopping at 5 or 6 is done, but it also means we can start doing this stuff earlier rather than after nap. I know it will take some adjustment on my part, but I am sure in a week it could feel normal.

On a more serious note, saying good-bye to the crib is by no means hard for him. It is hard on me and even daddy. As I picked out toys that are for a baby and washed his crib sheet one more time…my heart was quietly breaking. Would this be the last time I see this crib? Are my baby days already over? I just don’t know.

I have so many questions for his developmental ped next week. The questions will make me sound like I am in a stage of denial or blame. These questions are not about that all. I want to know if there is any way someone can tell me why so I can decide on whether or not to have more (or to adopt). Questions that are silly to serious…all (from what I read) possiblities for why he is developmentally delayed.

This is a bit of topic, but not, and I am going to pose it here —knowing well someone is not going to answer, but any way… Can your child have ASD, but have good play skills? I ask because his play skills have really blossomed. I mean, I am sure he is still not like non-ASD kids, but still I wonder.

Good news today – he is singing! I don’t know what he is singing exactly, but that’s what it sounds like. It started about a month ago and each day grows stronger. I think music is the way to developing speech with him! He’s making more variety of sounds. Each day he gets closer to putting a single word together. That is the day I will throw a big party and burst out in great big tears of joy. I know he’ ll be a talker like I am, so I am waiting so patiently to hear that voice in words I understand.

It’s obvious my son is giving up naps, but at the same time, if I wait until 3:00…he will nap. (I just don’t know why any more)

The school people just left a little bit ago. We are in the process of getting him evaluated for 3 year old services. Ugh…more testing, testing, testing. I think it’s clear that he has ASD and qualifies. I just hate “the system”. His OT, speech, PT, now the ASD specialist have bounced through the door in the last month. They all know him, this is so stupid.

On a different note, yesterday I saw my next door neighbor. I don’t think she knows about my blog, so I will speak honestly (and hopefully not regretably) here. She has MS. Something she told me and some other female neighbors after another drunken neighbor and I sort of forced her to tell us what she was hiding. She acts like it’s no big deal. I hope she is right. Regardless, I feel connected to people with MS and other diseases/disorders with no known cure. MS is just as mysterious as ASD and so I feel that she gets us. After speaking to her a few weeks ago, I am not sure that is the case since her MS was not obvious and signs of it are just now starting to become apparent.

Yesterday she said she finds ASD fascinating and thinks there must be a positive side to ASD. I didn’t know what to say at first. My first thought is yes, but then I wasn’t sure still what to say. I look down at my toddler walking in front of us. He keeps checking in with us. Making sure we are walking along side, he is playful and curious. I think if she would have been anyone else I would have felt angered by the question. I would have pointed at him and said “really, look at him…there are  a million positive things about my kid, ASD is just one aspect of him (granted a big piece)”. But, I didn’t get mad. I am tired of being angry anyway.

I decided to not discuss my own child, but let her talk and the only piece I contributed before changing the subject is that of course there is a positive. Many of the genisues of our time had ASD. From Einstein to Van Gogh, a bunch of other famous people, these people have changed the human experience for the better.

I decided to research other positive aspects of ASD today. My child is generally a happy little guy. He does not publically stim and does not meet the stereotype people have in their minds. I don’t doubt that one day it will be clearer and is already becoming more obvious as he remains unresponsive to langauge and talking (but, some just think he’s deaf).My son is not negative or positive. I can’t put his disorder in those terms. I could talk about that this is not a death sentence or contagious, etc, but I will leave what I feel is obvious aside and share the following with you.

The positive side to Autism – Written by a woman with ASD

Top 10 Terrific Traits of Autistic People – A top 10 list

Children with Autism-The Good Side - A little repetitive from the previous article, a quick read

And I love this article about a mother with 6 children, 5 have ASD…

Caring for — and Blogging About — Her Five Autistic Children – It’s very positive and refreshing to hear. I needed this personally after crying about someone’s story about their child at birth (having a stroke, etc).

It’s hard for me to be positive. So this blog entry is a good start…and today I am grateful for my son’s nap so I could sit down and write

I have no energy. I am sick and I have a toddler that has decided to more or less give up naps this week. Ho-hum. This is lame! Nap time is the best! And he isn’t really giving them up because he’s passing out in the car on our way home and is napping at like 4:00! I want to keep him up until at least 7, but the timing is so horse shit. I am so exhausted from this cold that I completely give in to this bad nap time. Something about laying him down completely recharges me.  I don’t have to nap for this to work. So I need to sleep in rather than nap. I need to change my schedule to meet his. And it sucks!

I had to go to his monthly meeting today. They might be getting a speech therapist at their location. Joy! How nice it would be to not drag him to another location. I hope it works out. I hope it’s good.