Christmas Eve!

I can't believe it's Christmas Eve! Thank goodness I stayed up pretty late last night wrapping allo f Ava's presents ( thanks Grammy for ALL the help! ) Usually I am up late on Christmas Eve wrapping , so it feels good to have it all done.
I really hope everyone is happy...it is so hard when you have so many people to buy for. I really just tried to concentrate on Aves, and I still feel like I didn't get her enough. There is this CUTE Little Einstein set at Target that I know she would LOVE to have, but it was 40 bucks, we are pretty much BROKE so I had to refrain from buying it today.
We went to Morgantown Mall yesterday with Grammy and Aunt Penny. I really LOVE that mall, it was my first time there and it isn't far from here at all! Aves was really good, she walked because we forgot her stroller. She did well, only had to carry her a few times. I was really surprised she didn't try to run away.
They had a huge play area for the kids, so we let her go in it. It was really sad to see her so afraid of other children. She cried and wanted to leave but we stuck it out and eventually she got a little used to it and walked around, played with some of the stuff. She generally looked scared ( though Aunt Penny didn't want us saying that ;p ). Makes me wonder what she is going to do in pre school...other kids WILL be there, I don't want her to be somewhere she is afraid of .

Well I will be back with pictures from our Christmas Eve later!!

There is nothing like...

It being mid December, a winter storm watch is in effect and dancing around the bedroom to "Frosty the Snowman" with your 2 year old. Twirling around the room seemingly without a care or worry in the world, the giggles and laughter as Mommy bellows out the lyrics to Frosty, then tumbling to the ground in a big tickle fest. A great way to spend the morning!

Can she talk?

We went to AppleBees for dinner this evening and the FIRST thing the guy who seats you asked was So can she talk? Umm. Ok lol I know this is HARMLESS....a little harmless question, but for some reason I froze. I looked at him with a smile, and said the first thing that came to mind. I said "ummm kinda" and shook my hand back and forth. He said "kinda?" and bent down to her and said Hi! So I nudged Ava and said SAY Hi Aves! And she did. So she kinda does talk, but jeesh....i know this wouldn't of bothered me under normal circumstances, and maybe I am just crazy. It is not that it really bothered me, but we get it so much. The nice waiter lady came up and said the most FAMOUS question of all... "Whats your name?!" Honestly I know Ava knows she is Ava, but she doesn't understand that question. So of course I give her a second and answer for her.
Just to clarify I am not mad, it is just funny how if I had never heard of Autism, or had to deal with a speech delay It wouldn't of bothered me. I love when people pay attention to Ava. Maybe I should make that my opportunity to raise awareness for Autism.

We haven't had speech in two weeks. The first week she canceled then I had to cancel, and then it snowed and she couldn't make it. Ava is doing really good, especially when we tell her to say things..she will say it. I remember them telling me around 2 1/2 -3 years of age is when that window opens and that she would have a language explosion. Well it's not an explosion but it is coming. I get really sad when she IS trying to say something that is MORE than one word and it comes out all wrong. Example...Night night Dada. Comes out night night GUNK GUNK..the last part through her nose. Then she will do it again and again. And she WAS saying dada..but now its gaga. So much to worry about. I often wonder if there is something more going on in that brain of hers.

Mama mama mama!!!

Oh how sweet that sound is! Finally. 28 months later, she looked right at me and said "Mama". It is so funny how parents of special needs children proceed with caution even when something GREAT happens. At first I was in disbelief. Then she did it again, and I have even heard it today. My heart is overjoyed. I can not begin to tell you how much it means to me to hear THAT word.
Her little voice is just so sweet. I have to tell you the story of todays "mama". I was outside messing with Christmas decorations, and I must of left the door open a little. Next thing I know I hear "MAMA MAMA MAMA" And I look up and she is peeking out the door with the biggest smile on her face. Oh she just melts my heart. It was so cute, I wish I would of had my camera.

Needless to say I am SO in love with my daughter!

Leaving you with some Christmas pictures...

Happy Thanksgiving!

I hope everyone had a great Thanksgiving! We had a nice day, except I have a really bad flu/cold. It is still lingering on and I feel horrible! But I do have so much to be Thankful for.

I will update more with pictures from our Thanksgiving later.

Ups and downs

As I write this post I just feel like crying. I am not sure what is wrong with me. Today Ava's ST gave us a number for another doctor down in Pittsburgh, we need to get a new eval so we can get TSS and hopefully ABA started. We thought maybe we could get by with not doing this until May when she would need a new eval anyways, but we all agreed we need it now. While her language is starting to come around, her problem solving and cognitive thinking is still lagging behind. Example...you take your child out of the car in a parking lot, tell them to stay put for that brief moment while you shut the door and they know to stand there, Ava will not know and will dart off. She doesn't understand concepts like that. I can't tell her to stay by mommy, or hold my hand.
I realize this skill will probably come around, i mean a few months ago she didn't know what " find your shoes, or get me a diaper, or throw this away meant. " The latter being VERY new! I told her to throw her juice box away and she did!

My niece and nephew were here this weekend, and I can TELL she wants to play with them. She likes to look at them, but when they come near her she holds up her hands in front of her like STOP! Brady likes to hug her and she shrugs him off. Pains me to see, but it is so good to have them around. They need to come over more often!!
Leave you with some recent pictures, nothing great...the sun hasnt been out in days and I need an external flash!

They are all looking...yay for lollis!













Poor Aves was not having it!
















Our pup!

Ava's words

Ava’s words

Spontaneous words

1. All gone (aaa gawn) with sign

2. More ( nore ) with sign

3. Please ( teese ) with sign and while touching her lips with palm of hand

4. Nanny

5. Penny ( ninny)

6. Bye Bye ( with gesture ) then blows a kiss.

7. Book

8. Broke ( boke)

9. Bee ( Loves bee’s and bugs )

10. Hot ( when looking at the space heater )

11. Night night ( niiii niiii )

12. Moon

13. Plane (peen ) umm lol ya

14. Stuck ( cawk) lol I didn’t want to spell it the other way but you get the point hehe

15. Cookie ( cook cook )

16. Balloon ( boon)

17. Baby

18. No ( And even will shake her head sometimes )

She will Mooo for a cow and most recently said oink oink and meow meow for piggy and kitty. We are really trying to get her to say yes and no to answer us, she really doesn’t get yes and no questions just yet. BUT she has nodded her head yes when asked to say yes. AND there was a sign with cheese on it at wal-mart and she looked up at it and said tteese. I was LiKE OMG ! She won’t even eat cheese , how does she KNOW that is cheese? We have also decided that sound she makes out of her nose is a type of stim. We have done so much research on it and finally came across some information that pointed it to a stim. She does it A LOT, but we really can’t redirect that stim because she doesn’t understand when we tell her to “open mouth” or “talk through your mouth”. It really isn’t harmful right now anyways.

Fall pictures

We took Ava to Ohio Pyle, we had a great time! She loved to be free and run of course.
Here are some of the pictures.


























































And we also went to the park....getting all of our outside time in before the flakes start flying!

Three Halloweens down!

I can't believe it was Ava's THIRD Halloween already! Time sure does fly. We had a pretty good Halloween, despite an awful time at the Dance Studios Halloween party. It was just way too overstimulating for her. She seemed very happy but, that Mommy instinct in me KNEW that something was just off. I tried to pick her up for the group picture, and she wouldn't let me..she wouldn't look at me...slapped and hit me and screamed. To everyone else she looked like a bad child, but really I know her sensors were just overwhelmed. She can cope very well in our house, but outside of it I guess is a different story. Especially something on such a large scale. Don't get me wrong, she was laughing and so forth but there was no control and she wouldn't look at any of the kids or anything. She fell and busted her lip and blood was running out of her mouth and she didn't even seem to care! We left in tears. Then we learned the mouth boo boo was nothing compared as to what happened next! Ava got her FIRST bad Boo boo that night. Daddy stuck her in the bathtub and she slipped and fell against the side of the tub. Scared me to death!


I was all ready to call 911~ I panicked like a true first time mommy. She now has a nice black eye and turning greenish and yellow. sigh!
Trick or Treat went MUCH better. She WORE her bee costume for me. I was so happy. She really doesn't like it because of the hood, but we put it on right when we walked out the door and she was free to run and have fun . She was a trooper. You can see her black eye too!

Meltdowns

Ahh! I know a lot of this is normal two year old behavior...I also know that it is exasperated by her Autism. Anyways, this morning her Aunt Penny, Grammy and I went to this Halloween store, which had no carts and I did not bring the stroller. So I am holding her and of course she wants down, she wanted her Aunt to hold her but Penny has a broken foot and on crutches so that wasn't working out well. Sooo I am struggling to hold on to her and she slips out of my arms and melts to the floor. Seriously, she let everything just go limp and to my dismay started making snow angels right in the middle of the aisle..then scootching on her back down the aisle. I would pick her up she would scream and just go LIMP. She didn't want to walk, she just wanted to lay on the floor. UGH! I am the mom who is all about behaving in public, HUGE on manners, and really I don't take this kinda stuff well. Everyone was staring at the two year old using her back to sweep up all the dirt in the aisle while her mother frantically tries to make her stop. Then she wants to run....... run run run. PLEASE Ava, I BEGGED and pleaded with her. I finally get her in my arms and I am NOT letting go ...she kicked and screamed and she WON..how can a two year old WIN? thank goodness for the squishy ugly frog that caught her attention..aunt penny bought it for her and off we went...to wal-mart. Where are carts that her little butt was strapped into.
These meltdowns are coming more and more often.
This evening I was on the phone with a friend ( hi tammy) and Ava just starts screaming at the top of her lungs, poor Tammys ear. Just one scream after another.
And they wonder why the 5 min trip to the grocery store is like a vacation to me!

A website and random banter

First I wanted to post this helpful link to follow if you suspect your child may be on the Autism Spectrum. http://www.childbrain.com/pddassess.html
It REALLY is helpful and more comfortable to do in your own home to see if your concerns may be valid. I have been doing this test with Ava every few months to see her improvements. She actually has gotten a worse score now that she IS talking more, but I honestly think it would of been off the charts if she was the same child 6 months ago and starting to talk. She scores at the end of moderate PDD-NOS.

I was so happy that Ava has had a couple great therapy sessions this week..far cry from last week when she behaved so badly and was acting as if she was rebelling agaist them...poor miss K took the brunt of it . This week was much better, Less talking through her nose..more opening of her mouth . Yay! I still long for the day when she just burts out some big huge sentence...or even something much more simplier..Like "I love you, Mommy"....or even Love you mommy....love mommy....or if she would just point to her eyes, her heart, then to me like ive been tying to teach her for months. I KNOW she loves me, but it would be nice to hear. And if not ever, thank goodness parents have that instinct and just KNOW their children love them just by the look in their eyes, their touch, their smiles, and how their eyes light up, and the awesome kisses i get in the morning.

People tend to think of Autism as ONE set standard..it is a spectrum, a huge one at that. I think thats one of the most important thing to realize. it is HUGE..form a child rocking in the corner and non verbal, totally disconnected from the world..to a mildly affected child with a minor speech delay and some quirks. I am not sure where Ava falls, she is NOT severe and I thank my lucky stars that she is able to somewhat get her point across to me, and tries really hard to be a part of this crazy world we live in.

Just say no to flu-shots

It's flu shot season! Many brands of the flu shot still contain in excess of the EPA's allowable mercury exposure for a 500-lb. individual. Mercury is the second most neurotoxic substance on the planet. Exposure can lead to irreversible developmental and/or neurological damage. Mercury has NOT been removed from all brands of flu, Rhogam, diptheria or tetanus vaccines. If you are contemplating a flu shot this season, please print this chart and take it to your doctor.http://www.vaccinesafety.edu/thi-table.htmRequest a mercury-free flu shot... they are available!!If your doctor insists that it's safe to be injected with between 4 (large adults) - 20(small children) times the EPA's allowable amount of mercury in the form of thimerosal, a toxic preservative that has been banned for years from paint and other medical products due to its severe neurological, autoimmune and gastrointestinal effects, I would respectfully suggest finding a new doctor.

Have a safe and autism-free autumn!

Ava has autism

Even though it has been since may that she got the diagnoses, even though I knew in my mommy gut WAY before then...there are still days where it just HITS me all over again. Seems like I am on overload worrying about her development, in her face all the time, doing the therapies, stressing over her not eating and talking...that when all is calm for 5 minutes I start to really thinking. I get that horrible sick feeling that brings me back to the day she was actually diagnosed. Where I felt like I wasn't even in my body anymore.
I know that Ava is progressing and doing better, I am so proud of her. I do think I let it cloud my judgement because when I am around other children, her peers, I can see the big difference.
We went to my sisters house this past weekend, and her cousin is 7 months older than her. She did a lot better with them than before..she would just scream until we took her home. This time she was very interested in their toys. Just not them. She ignores them , acts like they aren't even there. And if i would ask her to hand them something she would totally look away and hand it to them..make every effort not to look at them. Breaks my heart.

But I have to keep on pushing on. I love her with every ounce of my heart. I have bene reading the postive stories, stories of recovery and that is what I am going to focus on.

Also , if anyone has any idea where to buy Autism Lapels in bulk for cheap, please let me know.

I will leave you with some fun park pictures!

Fun OT

We are really blessed that Ava loves all of her therapists. You can just really tell she is comfortable them, and her OT "K" is no different. Ava didn't have a nap yesterday and was ready to conk out during last nights OT session, so Miss "K" pulled out the coolest bubbles ever and went outside with Ava to play. They are catchable bubbles, and Ava got to work on getting that finger out and popping them all over the front porch. They were a HUGE hit!! I try not to buy the toys the therapists bring but I think I am going to have to give into this one and head to Target and see if I can find some.
Here are some pictures

New week

Happy Monday! Well a it's a new week which means a whole new week of therapy and hopefully progression! Ava has been repeating us more and more, which is SOOO awesome! I love her little voice.
Here are a few of her new things she is saying :
The MAJOR one : Mmmmmm Good! LOL it is too cute! She said it out of the blue one day while eating ice cream ( YUP ICe cream! )
Another is "moon" more like moooooo but she knows what the moon is and will point to it and say "moo mooo moon" over and over again.

And "bye bye" is really clear now. She will Wave and say it! How cool is that??

And one other major thing is she is trying to say More while signing it. She will sign More and say something . Which is really big. We have been wanting her to change from using the signs to using the signs and using a word with them.

I am so very proud of her! You have no clue! It has been such a long 6 months.

At our last IFSP meeting we talked about her going to school..can you believe it? We are all thinking she will need to go to a pre school for special needs children, but are hoping and praying that by kindergarten she will be able to go mainstream, maybe with an aide. I get really sick to my stomach when i think about her not being mainstreamed. I would love her either way, but as a parent you want the most "normal" typical thing for your child. I guess we have a long way to go before we get to that point, I am jumping WAY ahead!

What is Autism?

I've heard this question so many times. No one really knows what it is, and when I try to explain the definition..." Autism is a brain disorder that affects..." I lose them sometime after that. I found this website that kinda explains it better without all the jibber jabber medical terms. So here we go:


THis is taken From : http://www.kidshealth.org/kid/health_problems/brain/autism.html

What Does Autism Mean?

Autism (say: aw-tih-zum) causes kids to experience the world differently from the way most other kids do. It's hard for kids with autism to talk with other people and express themselves using words. Kids who have autism usually keep to themselves and many can't communicate without special help.

They also may react to what's going on around them in unusual ways. Normal sounds may really bother someone with autism — so much so that the person covers his or her ears. Being touched, even in a gentle way, may feel uncomfortable.

Kids with autism often can't make connections that other kids make easily. For example, when someone smiles, you know the smiling person is happy or being friendly. But a kid with autism may have trouble connecting that smile with the person's happy feelings.

A kid who has autism also has trouble linking words with their meanings. Imagine trying to understand what your mom is saying if you didn't know what her words really mean. It is doubly frustrating then if a kid can't come up with the right words to express his or her own thoughts.

Autism causes kids to act in unusual ways. They might flap their hands, say certain words over and over, have temper tantrums, or play only with one particular toy. Most kids with autism don't like changes in routines. They like to stay on a schedule that is always the same. They also may insist that their toys or other objects be arranged a certain way and get upset if these items are moved or disturbed.

If someone has autism, his or her brain has trouble with an important job: making sense of the world. Every day, your brain interprets the sights, sounds, smells, and other sensations that you experience. If your brain couldn't help you understand these things, you would have trouble functioning, talking, going to school, and doing other everyday stuff. Kids can be mildly affected by autism, so that they only have a little trouble in life, or they can be very affected, so that they need a lot of help.

What Causes Autism?

Autism affects about 1 in every 150 kids, but no one knows what causes it. Some scientists think that some kids might be more likely to get autism because it or similar disorders run in their families. Knowing the exact cause of autism is hard because the human brain is very complicated.

The brain contains over 100 billion nerve cells called neurons (say: nur-ahns). Each neuron may have hundreds or thousands of connections to other nerve cells in the brain and body. The connections (which are made by releasing neurotransmitters) let different neurons in different areas of the brain — areas that help you see, feel, move, remember, and much more — work together.

For some reason, some of the cells and connections in the brain of a kid with autism — especially those that affect communication, emotions, and senses — don't develop properly or get damaged. Scientists are still trying to understand how and why this happens.

What Do Doctors Do?

Figuring out if a kid has autism can be difficult. A parent is usually the first to suspect that something is wrong. Maybe the kid is old enough to speak but doesn't, doesn't seem interested in people, or behaves in other unusual ways. But autism isn't the only problem that can cause these kinds of symptoms. For example, kids who have hearing problems may have trouble speaking, too.

Usually, lab tests and other medical tests are normal in kids with autism, but doctors may do them to make sure the kid doesn't have other problems. These medical tests may include blood and urine tests, a hearing exam, an EEG (a test to measure brain waves), and an MRI (a picture that shows the structure of the brain). Intelligence (IQ) tests also may be done.

Often, specialists work together as a team to figure out what is wrong. The team might include a pediatrician, a pediatric neurologist, a pediatric developmentalist, a child psychiatrist, a child psychologist, speech and language therapists, and others. The team members study how the child plays, learns, communicates, and behaves. The team listens carefully to what parents have noticed, too. Using the information they've gathered, doctors can decide whether a child has autism or another problem.

How Is Autism Treated?

There is no cure for autism, but doctors, therapists, and special teachers can help kids with autism overcome or adjust to many difficulties. The earlier a kid starts treatment for autism, the better.

Different kids need different kinds of help, but learning how to communicate is always an important first step. Spoken language can be hard for kids with autism to learn. Most understand words better by seeing them, so therapists teach them how to communicate by pointing or using pictures or sign language. That makes learning other things easier, and eventually, many kids with autism learn to talk.

Therapists also help kids learn social skills, such as how to greet people, wait for a turn, and follow directions. Some kids need special help with living skills (like brushing teeth or making a bed). Others have trouble sitting still or controlling their tempers and need therapy to help them control their behavior. Some kids take medications to help their moods and behavior, but there's no medicine for autism.

Students with mild autism sometimes can go to regular school. But most kids with autism need calmer, more orderly surroundings. They also need teachers trained to understand the problems they have with communicating and learning. They may learn at home or in special classes at public or private schools.

Living With Autism

Some kids with mild autism will grow up and be able to live on their own. Those with more serious problems will always need some kind of help. But all kids with autism have brighter futures when they have the support and understanding of doctors, teachers, caregivers, parents, brothers, sisters, and friends

Ava's Story

Ava was born early at 35 weeks. She spent two weeks in the NICU and it has always been SOMETHING wrong with Aves..I always knew there was. I got the NO no no..she is fine, you are the crazy one..the doctors blew me off, hey I am just a worried first time mom that totally over reacts. Around 12 months, I started researching. I came up with Autism. My heart dropped as I read the signs and red flags of Autism . I just KNEW that my Ava had this. No one else in my family ever even heard of it promptly told me to stop it. Never to mention Autism again. My mommy instincts were taking over and by 18 months I think everyone else started to realize..wow maybe there is a problem. Ava was not looking at us, we could call her name..I would yell and scream and cry and she wouldnt turn around. She wouldnt eat, threw up all the time, hated being outside, we would take her tothe park and she would just sit there and eat the mulch while other children her age climbed and ran around the play equipment. She was so aloof..she just would sit in one spot for HOURS. She would stim on objects , piling them up in piles and then moving them one by one to the other side of her, making a new pile.

I took matters into my own hands and called our local Early Intervention program. A couple weeks later they sent out a team to evaluate Ava. She scored incredibly low in all areas, and only 9 months in communication when she was 18 months old. She was basically globally delayed. She qualified for Speech, Occupational therapy and Special Instruction. I wanted to know WHAT was wrong with my baby. I made an appt to see a developmental pediatrician in Childrens Hospital. There was a waiting list and in that time she started therapy. It took a couple of months but all the sudden we seen changes. God Bless those angels ..her therapists . She started to pick up sign language, and after being afraid that she was NOT going to pick up any all the sudden she learned 2. Open and More. Oh my goodness it was a miracle..my baby was FINALLY communicating with me. By the time her appt came around she was making better eye contact and had about 6 different signs. Her sleeping was still very poor and we were still working on her sensory issues, but she had made progress. It wasnt enough. She scored poorly on her MCHAT and they gave her the dx of Autism. Even though i KNEW it...it was so hard to hear. I broke down into tears, hated the world, cursed the higher power for giving my baby Autism. It was a low point.

Now that Ava has been in Early Intervention for 6 months she has made A TON of progress. I am still hopefull ( no, not denial ) that her dx will somehow go away, that one day she won't carry a label. She has about 10 signs , and is starting to repeat words. Lots of words, she is up to about 15. She is saying "ball" randomly which is AWESOME for us. We overcame a ton of sensory issues. She still has a poor attention span but we are working on it. Her therapists are our life savers. Sometimes I dread the long hours and days of therapy, but then I see all that it has done for her. I am a HUGE believer in Early intervetion. Please if you think something is wrong with your baby, dont be afraid to make that call. IT doesn't hurt at all. She will probably not be going to a regular preschool, but one for children with learning disabilities/Autism/Special needs. But I will NOT give up on hoping and praying that she will attend a regular main streamed kindergarten.

Welcome!

Welcome to all who is reading. I hope to in some way inspire others who are going through what I am, raising a daughter/son with Autism. I am also a big lover of Photography so there will be many pictures posted of my daughter Ava, and random smandom things.
I hope you enjoy!