They Need to Know

I am starting a series titled They Need To Know.  It’s about all the things that go on in our lives raising our autistic son that are never seen and how it feels so lonely being unnoticed.  They Need To Know that we are more than acquaintances, friends. coworkers, family or anyone else.  There is a struggle and an incredible upward journey that has so many joys but so many terribly hard moments.  In essence i will share that way a family with autism survives…..and They Need To Know…it’s hard!

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Mess, rest and the balance that will never be

Sitting here with my daughter at bed time and the house is truly a mess. I am not sure I’d there can be a balance between mess and chaos and rest. I have realized that there is a part of me that will just go and go without taking care of myself. So much gets done; I mean so much
Ore than what’s normal. Problem is that what goes up always plummets back down. I am in a period where I am dedicating more time to taking care of myself and giving myself some rest, repose. Now the house suffers. It wouldn’t be so bad but my son Taylor is so very hyper and massive messes. Can happen quickly with him. You are usually too tired from chasing him around all day to get to the messes he made that day. So herein lies my dilemma. If I get the rest I need the house falls. Is there a workable balance here

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15 Feet

I am noticing how much I am learning about God through my relationships with my pets.  Every night I get my cats in the how for bedtime.  It makes me feel good knowing they are safe and comfortable.  This being said I will stop at nothing to get them.  I have been known to wait twenty thirty minutes trying to get them in.  Sometimes and lately so.  Bella will come running initially, but then suddenly have a change of mine and walk back out to the sidewalk.  I will follow her and sit on the curb hoping that she will get comfortable enough that I can coerce her over to me and i can get her in my arms and take her inside.  I have to sit forever and sometimes I give up waiting still for another time where I will start my attempts all over again.  It always baffles me that only 15 feet are standing between me and her.

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Feeling fat

The title just came to me.  I am at my worst body shape ever.  Now that being said, my best shape was a size 0 and I had “eating issues”.  I never had that baby bump after Taylor was born.  I also was able to work out 5 days a week.  Now with Taylor’s needs I can’t work out as well.  I am trying to do more exercising inside, but we’ll see.  Maybe when he goes to school full-time this next I can join an inexpensive gym.  I have o do something because this just isn’t cutting it

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I am sitting in a clean house.  Well, it was cleaner before my kids came home.  We were working until 2am on things that we really couldn’t do with the kids around, like painting touchups and deep floor and furniture cleaning.  I had friends over today and my parents brought the kids home early so for about the last hour or so I was making sure Taylor kept his clothes on and that he and Emma didn’t get too messy from the 8 or so cupcakes they stole from the table and only ate the frosting.  I wish Ryan wasn’t at work right now.  It’s pretty peaceful knowing that there isn’t major housework to be done (not counting the laundry mountain in the garage).  I’ve noticed since we doubled Taylor’s medicine that he has taken more of an interest in interacting with Emma and to some degree, other kids.  The problem now is that he doesn’t know what to do and he ends up pushing and lightly hitting kids.  He thinks he is playing with them, partly because he can play rough with us, but they don’t understand and then we have to explain once again his condition.  Most people are pretty good about understanding once they are told about him.  I still get stares pretty much everywhere I go, but you get used to it after a while.  Emma is noticing more and more now that Taylor doesn’t act like the other kids and she doesn’t understand and gets hurt feelings when he acts a certain way.  He loves to have her jump with him on the trampoline, which is a new social gain itself, but he doesn’t understand why he just can’t pull her by the hand up with him…especially when she doesn’t want to jump.  We have to watch him because he’s pushing her down when she is jumping.  He isn’t being malicious when he does it; it used to be a game between him and Ryan and I.  He loved it when we pushed him down and jumped around him to make him bounce and now he is trying to do it to Emma.  Another thing she doesn’t understand.  I know she will figure it out and he eventually will learn that he just can’t do certain things.  I can’t say for sure whether he will understand why, but we’ll take what we can get.

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One More Thing…

I got a note home from Taylor’s teacher today that said he was saying no more often to them and it was always at appropriate times to answer with a no.  Praise Jesus!

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A Mother’s Treasures

Luke 2:19 “But Mary treasured up all these things and pondered them in her heart.”

The first time I read this verse I thought the treasuring up of things and thinking about them to yourself sounded a little selfish, but now with kids of my own, I see it differently.  Any mother when she has given birth treasures the moments when the crowds come and ooo and ahh over her baby and ask how she is feeling.  I’m sure Mary felt that way, but I feel like it was more than that.  Crowds were amazed at the birth of her son and people were praising God in the streets, her son’s Heavenly Father.  There are times when something in a situation is so important to me, but it seems like nobody else relates to it like I do.  In those times, if I couldn’t rejoice with them I would just do it by myself when I am alone and can think and rejoice with God.  I wonder if that is why she treasured up all theses things” but “…pondered them in her heart.  No one could completely understand what not only being a parent of a child who is God and is worshiped by crowds, but being his mother.  What a special joy that must have been.  I don’t anymore think the pondering it in her heart part meant she was lonely.  Only God himself could understand exactly what she felt, and he was right by her side.

I had a moment like that this week.  I was reading a story to my son and I without thinking asked him who one of the characters in the book was.  I realized after I said it, that was something I would do with Emma, but Taylor was thought to not be aware enought to do that.  He didn’t say anything at first when I pointed to Dora , and I thought “he’s thinking but he probably won’t get it.”  For some reason I felt the idea to move to the picture of Boots and, with little expectation, see if he would respond.  I asked the question and the first thing I noticed was his attention to the book and my question.  It could have stopped there and I would have been praising God.  But after a few seconds in a soft whisper is said “Boots”. I was delighted.  Not only did he answer a question, but it was a specific question; not a yes or no question which is a little easier having only two choices to choose from.  My husband was happy, but I was wanting someone to rejoice and praise God with me.  He did the same feat the next day in front of my mother in law this time with Nemo, which he hasn’t seen for at least a year, and she didn’t think anything of it.  I wasn’t going to find my praise partner there.  I told my parents about it and showed them how he did it and they were happy, and they may in the end give God more of the credit, but I know God is healing my son.  I can’t find anyone to rejoice with gladness and praise God with me.  So, I treasured all these things and I ponder them in my heart praising God in my own quiet time.  God is there and he listens and rejoices with me and I am sure even more so than I can even rejoice.  I look forward to the direction he will take us on this journey.  I will love my son and continue to be so very proud of him regardless of any advances he makes, but I am so excited to see God’s hand on him.  We sing a song in our house that my daughter brought back from Sunday school…..

Praise Him Praise Him

All you little children

God is love; God is love

I was going to find a verse on praise, but I feel the song speaks for itself.

By the way, for those who might not be as familiar with autism, answering a yes or no question is a big thing, but answering a question where the answer has to be specific is huge…especially when you child isn’t talking much.

Praise God from whom all blessings flow

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More Awesomeness!

Today as I pointed to a picture of Nemo I asked Taylor, without any high hopes he would answer, who that was.  He said Nemo!  I am so excited that he is not only listening to what I say at least some of the time, but that he actually answered my question and it wasn’t a yes or no question.  That’s big in Taylor world.  It’s great to have at least that communication with him.  I am going to try to work more on his colors, numbers, and letters with him.  I have been discouraged lately with reports from school about his ability reports in math, reading, and language that said he was below level.  I wasn’t surprised by the reports, but I had hope that he might be doing better than I thought.  After he answered my questions, I received more hope and strength to try more with him.

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Small Steps

Today was a big day.  Taylor requested the Dora story and he let me read it to him.  I asked him to point to Dora which he didn’t but when I pointed to boots and asked him who that was he said “boots” in a soft voice.  He did this multiple time for me.  I know that to some this is nothing new.  But for my child, this was a hallelujah day.!!!  Praise Jesus!!!

Just realizing how family is so ready to judge our every detail.  As if we don’t have enough already on our plate.

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Laundry Day

Taylor wet the bed again today.  I went to get him up and I found the door was locked.  We used to have to lock him in at night, after he went to sleep because he would get up at night and wander.  Not wander as if in a trance, but with little understanding of boundaries and danger.  Or maybe he has too much trust that no matter where he is someone he knows will find him.  We don’t use the lock anymore because we were able to acquire double-sided combination locks for all the doors leading to the outside.  Unfortunately if you even bump the lock portion of his door it will sometimes lock without us knowing it.  I told Ryan today and finally he agreed that we should replace the lock sooner than later.  I know some people would be mortified that we would lock our son in his room, but I would rather have to bust his door down in a much less likely emergency than have to go searching for him in the morning because of the much more likely situation that he gets out at night.  It’s upsetting that Taylor has been wetting the bed.  About two months ago we started a new medicine and instantly he was having accidents and wetting the bed.  Even though we stopped the medicine,he is still having the wetting the bed problems.  I know it bothers him.

I have to admit it.  Besides getting my son to the bus in warm up pants (in my defense they are Nike pants and not generic sweatpants – I went through a phase where I thought I wanted to teach aerobics so I thought I would buy stylish clothes.  But they are still sweatpants) I got home and decided to sleep in.  My daughter slept long  so it was great for me.  Besides feeling lazy, I feel a little more rested.  Yesterday the kids were particularly active, and now that Taylor has developed more of a social interest in his sister I have to follow them around and make sure he plays nicely since he doesn’t understand that his playing rough isn’t a way to play with his sister.  I also have to try to explain to a two-year old whose brother just pushed her why it wasn’t meant to be mean and that Taylor is sorry.  I don’t know if she  fully grasps accident and even if she did, it really wasn’t an accident; he just doesn’t understand.  I know he feels bad.  His face shows he knows he did something to upset his sister; he just doesn’t know what or why.

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