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. 

Autism

I've had about a week to digest everything I was told. I knew it was coming, I saw what the doctors, therapists etc saw. I asked for the referral. I filled out the 300 question questionairre and waited months to get an appointment 6 months after that.
Yet the night before the appointment I barely slept. I dreaded it. We needed to go. I still dreaded it. Someone was going to tell me something for sure that would change our whole lives. You would think I would be used to it considering I'd gotten "the news" so many times including the fact that my child had seizure activity and could possibly have a tumor in her brain. Thankfully the MRI news was great. We do have so much to be thankful for.

My daughter has an Autism spectrum disorder.

It's so hurtful to hear. I spent a day crying. I would just be overcome with huge sobs and could barely breath and then be okay for a while and then it would happen again.

Now I'm to the point of needing to pull myself up by my boot straps and get on with it. I am her mother and her voice to the world. I will get her the help she needs to have the best chances of leading a happy\productive life. I refuse to put limits on what kind of amazing person she will become because none of us know and I have big dreams for her.

I've only been officially the mother of an autistic child for a week and already I am faced with the issues. Everyone agrees she needs a lot of help yet everywhere gives me reasons why she can't get that help. The run around is exactly what the seasoned moms said it would be and I've only been at this a week!

We will figure this out. Thankfully I have about six months until she ages out of the zero to three services to find a plan to continue speech, occupational and physical therapy. I am hoping to get her into preschool where she will get everything in one place but IDK what will happen. Take it one day at a time I suppose.

MIA

I have been missing in action. Too busy with too many things. My daughter's therapy swung into high gear weekly speech and occupational therapy and bi-weekly physical therapy. We also had a string of illnesses run through the house. My son was the first to come down with a stomach bug and within three weeks we all had it. I was the last. Both kids ended up needing IV fluids in the ER. Not fun. My daughter is once again recovering from pneumonia. Again. Third time this winter.

It's also been three months so I made the rounds to all the doctors with the kids and yesterday we had our WIC appt. I will once again sing the praises for WIC. Thanks to WIC my daughter gets 14 cans of EleCare a month paid for by magic and it's an incredible blessing. $629.30 worth of formula we don't have to cover. Also being in IL her insurance is required to pay for any formula she eats over the 14 cans. One thing I hear often from people who choose not to get WIC or make too much is that we don't know how much money we're saving or how much we're getting for free. We do. We are VERY grateful.

I don't know any parent who plans to need twenty thousand dollars to feed their kid for their first 2 years. Well for my DD nearly 22 thousand dollars. Yet without it she'd be a very sick little girl dependent on IV nutrition which I'm sure wouldn't be any cheaper.

In other news I am learning more ASL signs to teach my DD. Her speech has not improved although she is beginning to make more chatter, speech like sounds\noises even if they aren't words most of the time. I looked up BOY I tried to teach BROTHER but it's a complicated multi-part sign and she's 2.5 with a short attention span.

Left over pasta

I had some left over spaghetti noodles. Not enough for a meal but I was hungry. I melted some butter. Added some finely minced onion, a can of mushrooms, pepper and salt, garlic along with some olive oil. Cooked it down for 4-5 minutes. While it cooked I got some broccoli - too limp for the kids to eat raw but good enough for me. Added the cold noodles and tossed them in the butter etc. Added the broccoli tossed and popped on the kid. Five minutes later. Lunch! Yummy.

It could easily be made vegan with all olive oil and no butter. It was really satisfying and filling and quick. Some times I don't have time to or I forget to eat. Even more so with another illness going through the house [first DS, then DD, then DH...so far it hasn't gotten me] and I am hungry but by then I have low blood sugar. I get the shakes, sweat, my head hurts, I feel weak and think I might barf. So quick meals really help.