Another Month gone....

Another month over. Oh it's Harry Potter's birthday - totally noticed that this morning when I woke up. I just put the kids to bed. The cloth diapers are washing so they can dry overnight. I planned to get more done but my baby girl was needing cuddles and I am in more pain than I expected today. I made an awesome dinner tonight - it was yummy. My husband should be home soon to have his.

DD was diagnosed with hearing loss. We find out in three weeks if\when we'll need a hearing aid. Maybe this is why over a year of speech therapy has done little for her. Well that's not true. She makes gains and then has a big seizure and looses her progress. Then when her words come back [weeks or months down the line] she gets new words back, looses other words she once had. It's hard.

It's hot here. We've had little or no rain for months. We're on water restrictions but we're still allowed to water our lawns three times a week. What's up with that? Who cares about someone's stupid lawn? I let ours die. Don't even have to cut it.

In my boredom I began writing fanfic again. It feels like 2005. :P I have also been reading a lot of fanfic and here I was thinking I haven't picked up a book and then realize I read over 500, 000 words in fanfic in July.

Wife & Mother

Recently my son asked me why I don't work. My first thought was to think, "Hey I work! I never stop!". Then I had to step back and realize that most mothers he knows outside of me work outside the home. 

So I thought it was the perfect time to teach him [again] about how we all have roles within the family. How we all work together toward the good of the whole. Each part is important and worthy of praise and respect. Each job has his joys and his drawbacks.

We have two books on careers and what kids want to be when they grow up - neither give stay at home parent as an option. I wonder why. Many of us choose this for our lives our families for a number of reasons. My choice of "career" isn't less valid than if I chose to work outside the home.

This also seems to be a common belief among others. That I must be so bored to not work outside the home. I am waiting for the day I am bored. If I do get that day [my youngest will be in school half day] I wonder if this means I can take a nap since so many think I take a nap all the time!

I am in awe of the mothers of children with complex medical conditions\special needs who also keep outside jobs. How do they have the time? When do they wash the diapers or bake bread or fold laundry? I will gladly admit I couldn't do everything I do AND work a full time job. I am not super woman.

I have wondered if maybe in our quest to have equality - so women can work if the need to or choose or not have kids if they don't want to that we also in a way sold ourselves short. Now it seems a mother is expected to work full time, come home, cook meals from scratch every night, be on the PTA, take kids to lessons. Yet we never seem to put that type of pressure on Dad. Oh don't bug Daddy he's had a hard day at work but mom comes home to another job? Why is that? Is the job as home seen as less? Are we so used to taking on the whole world that people expect it of us? Do I have to do everything the world expects of me and perfectly in order to be a good mother or wife or woman?

On the flip side of that have we been taught by the world to expect less from men. It's a common joke oh Dad can't do this or that - he's Dad. My husband changes diapers - cloth ones no less. He's even getting better at remembering all the meds and times of Dad and learning how to play with our daughter is a way that's better for her. Now granted men used to do less with the kids but they also worked LONG hard days doing hard physical labor often working more than one trade. My Grandfather worked as a fisherman and worked his own small family farm...I'm sure he was very tired after a long day.

IDK but I like the idea of being reasonably confident that if I died my husband wouldn't be completely useless with his own children.      

So I hope by the time they are raised I will have instilled in my children the respect for motherhood and being a stay at home parent. I also hope I will give my future daughter in law a man who can run the washing machine, change a diaper or fix a meal as well as the normal "man chores".

 

The heat wave broke

It's over! It was actually in the 70s most of the day. Yesterday we got "rain" but it was more like a few drops. Just enough to bring my wash from drying outside and then it stopped. Of course. Today we got thunder and rumbles but no rain. Our plants and grass are dying and I think we'll be in a drought soon enough if we aren't already.

My poor baby girl is having a rough go of it. We meet the Neurologist Thursday to figure out what the heck we are supposed to do.

She is on the list to be measured for her first stroller-wheelchair at the end of the month. It will be easier than when she's more floppy than normal [she's low tone but much worse after seizures sometimes cannot even hold up her head] to not have to carry her. With my arthritis I cannot carry a 27 pound child all over let alone the huge hospital. I swear we walk miles.

Today was a good day. DD said a bunch of words: blanket, ball, blocks, uto [Pluto], star, apple, eat, and tree. A Good day. She loves flash cards. Most kids don't but she loves them so I think we have eight different sets now. She also worked on puzzles with Daddy. She also seems to be into motorcycles Vroom!!!

My son is being five - one second awesome the next second grumpy. I am so happy we'll get to go outside and play. Run off lots of energy. He's been making up words sounding them out and asking me if they are words. He discovered he could make fox and then  box he was very proud of himself. Then he made 'zurk' and asked me if it was a real word. He sounded out the letters correctly so I had to tell him it's not English but maybe it's Klingon or Romulan. 

Wedding days and the end of the month

Not for me obviously. Husband and I have been married for several years now. Being the first of my high school friends to get married or have children [beyond the one who had a child is high school] I have felt alone in this club. I made friends who were married or in relationships and mom friends but still. These are the girls who share my memories and laughs from high school.
The one marrying today I remember best for her silly LOTR fanfic she used to write and silly poems. She was and is fun. I hope only the best for her marriage and life with this now husband of hers. 

It's been very hot here like much of the United States and I hear Canada and many other places are also under this heat wave. *cue music* Only it's not exciting. It's oppressive. My husband tried to take our son to the park and it was already too hot by nine in the morning to stay our for long. Now we're under the threat of severe weather, many are without power due to down trees after these insane straight winds. Fun times! A whole week of heat wave to go before we may get a break. Awesome.

My daughter's health continues to worry us. Most days are good. Every day has many good moments and we do our best to protect the children from the stresses of a child with chronic health problems. Some big decisions will be made in July which could change things forever. I hope and pray we along with all the health professionals, her 'team' will make the choices which give her the best life. 

Scheduling out appointments I am already running into when my son will be back to school in August. When he will go to school all day and take a lunch. What?! This can't be happening he's my baby and now he's a big little dude about to go off to Kindergarten.

I am hoping once this heat settles down we will be able to enjoy more time outside. Right now it's just gross. 

Here to a fun filled July.

Not forgotten

A lot has been going on here in our home. My husband and I have both been dealing with the stress of the constant worry of dealing with a child with medical needs. Our son has some issues but they pale in comparison to his sister's ever increasing needs. We spent a lot of time each week thinking Autism, Epilepsy, medications, ER trips, Doctor's appointments, therapy. On top of the normal parenting stuff and making sure we spent enough time with each child. The balancing act.

Thankfully for the most part this has not stolen our ability to enjoy our baby. She's awesome. We love her so much. Her personality is bright and cheerful and she's funny. She loves Mickey Mouse, Hello Kitty, letters and numbers, jumping and bubbles.

I blow bubbles for her and she says "Pop!" over and over or "Big big bubbles!" so sweet since often times it's the only words she'll say most days and I am rewarded with eye contact to boot! 

My son has graduated preschool. He'll begin Kindergarten in the fall and if all goes well DD will begin preschool after she turns three if we are able to set up her IEP and get everything set into place. I am still having trouble with my Momma heart thinking of sending my baby away. Her brother was past the cut off so he was nearly four before he started school. I was thinking I'd get another year with her.

I just heard the books fall. My daughter likes to pull EVERY LAST BOOK out in order to find just the book she's looking for. It makes me happy that both my children love books. <3

As sad as I am -- well not sad but shocked at the fact she's nearly THREE and praying we're doing the right thing for our daughter. Everything we have been told by every doctor, every specialist, every book, article etc I have read says that early and intense intervention is the way to go and we're hoping it will help.


Gotta run someone is pulling me away....

The stuff I've pinned - ASL alphabet video

A friend of mine was talking about blogging about doing, making or using the stuff we've pinned. People often joke that we [those of us who use Pinterest] pin stuff but never actually getting around to making that art project or trying that recipe. So I will blog about the stuff I have seen on Pinterest and done or Pinned because I wanted to share it.

I pinned this video a month ago. In that time my children, my son who's 5.5 and my daughter who's 30 months have watched it hundreds of times. My husband and I too sing the song because we've heard it so often. We're all signing the alphabet and working on new signs beyond the 'baby signs' we started with. We're looking up real American Sign Language and are amazed at the world this simple video has opened up.

The most amazing thing has happened. My barely verbal significantly delayed autistic child is signing almost the entire alphabet [ G, P and Q are really hard for little hands] and has begun saying it too! She now will say "A is for apple" because of this video. Sure it doesn't make up for the hours and hours I work with her or Daddy or her speech therapists but it makes learning a form of communication that clicks with her fun.

I have decided not to post pictures of my children [their faces anyway] on this blog and it doesn't matter - of course she won't sign her alphabet or talk when I have the video camera! Seriously mom...I'm not a performing monkey. :P

Another week

Another week has gone by. The kids were up half the night so I didn't send my son to school today. He was a grumpy, weepy mess earlier and I know it's because he's tired. My daughter has a gooey waxy ear and an infected ear. She's also got this running nose and cough so she's been having breathing treatments.
Another busy week in the whole learning to be an autism mom. Met with the school board and her early intervention case worker and we should be all set to have her testing and IEP written so that DD will start school the end of September after she turns three and ages out of EI. Hopefully that way she will have no break in her services which at this point are weekly OT and ST and bi-weekly PT. She might not need PT come the fall we'll see. She's doing incredibly well. Considering how bad her low tone was when she was 10 months [couldn't sit up or roll over] she's come a long way with lots of work on her part. She usually crashes when her PT leaves because she's so tired. 
I am doing some massive spring cleaning. So far I've spent six HOURS on my room alone and I'm a little over half way done now.Three bags ready to take to the thrift shop, several bags out to trash. I am hoping to do my kids room next but I will have to do toy purging on days my son is at school and my husband can drive the toys to donate right away. Otherwise he'll cry for toys I hid months ago and he doesn't miss. We simply have too much stuff for the size of our home so something has to give.