Thursday, April 7, 2011

Happy Birthday Avery

Did everyone have a good April Fools this year….we sure did and we have a hole in the ceiling to prove it..super long story but  I did succeed to trick Jared and Destiny with the ole kitchen sprayer trick and I almost got myself on my own trick more then once…HA!!  Well then the girls were on a mission to try to trick us so they almost got Jared with toothpaste on the toilet seat…and they got me with toothpaste in the wipes container..I reached in to grab a wipe and pull my hand out bc it is covered in tooth paste..urgghhh!!!  We tried tricking them with there toothbrushes too but they caught on to that one too..and it kept going on like that for the night it was pretty year I think there will be some kind of food trick for them at supper…lol!!!  We then tried to get them with many verbal tricks like we are moving to SD and it is suppose to snow tomorrow but they really are to smart for there own good…
Wow my little “Dolly”- Avery turned four a couple of weeks ago…I really cant believe it..100_0794
Its been four years already since the dr walked into my room to tell me my little baby has down syndrome (still remember it like it was yesterday and probably will never forget it)..its been four years of some struggles/frustrations of raising a child with down syndrome…its been four years of lots of medical problems…its been four years of doctors and more doctors..its been four years of therapies..its been four years of major milestones that she has accomplished and we have celebrated each and every one!!!…its been four years of love that I cant even describe..its been four years of  pure JOY!!!….its been the most wonderful four years of my life and she has taught me and this family so much about love, life and joy that I would not trade for anything…We love you Avery…Happy Birthday Dolly!!!!
So if you all have been around you all know that Avery has been pretty picky when it comes to food/ I really have had to think outside of the box every year for her birthday..last year  I did a circus cake so she could have the sucker bc then she didn’t like ice cream, cool whip, cookies, cake, cupcakes, frosting..pretty much anything sweet…Well in a year we have improved a little bc she will eat certain cookies and ice cream but that’s about it..So I decided to make a giant chocolate chip cookie like they have in the Great American this is what I came up with…I couldn’t go all out on the frosting I had to make sure to leave some with out frosting so she would eat it…
Avery blowing out her candle and then clapping for herself bc she did it…Smile
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She is a little excited to open her cant really tell though can you????:)
This girl wants to ride a bike so bad with her sisters but she cant figure out how to pedal it and gets pretty frustrated and then gives up.…we have a little bike with training wheels from the other girls and that is the one that she tries to ride so I seen this “bike” and thought maybe she would be able to peddle it..well she couldn’t figure out how to peddle it but she made it work for her so she could ride bike with her sisters!!!  Love that smile on her face..I would say she is pretty happy to be riding her bike!!
Pure Joy!!!!
She got a baby from Grandma that moves her eyes and cry's real tears and will quiet down when you put a bottle in her mouth..She was pretty excited when she seen that baby!!!
Destiny and Avery looking at her picture book that Destiny made for her..Destiny found some of her pictures that she had that she knew Avery would like looking at with certain people in it…and put it in a little photo album that she had…examples: wedding picture of me and Jared, a picture of all the girls, a picture of me and Avery, and Jared and Avery and so on…..
The hat is from Brielle…she wanted to give Avery a present too so she went through her stuff and found something that she thought Avery would like and wrapped it up..These girls are so awesome with Avery I love it!! Makes my heart just melt and I'm really glad that God blessed us with all girls bc really is there anything better then having sisters…especially later in life!!! Sisters share a special bond…

It seems like just yesterday that Jared and I went to this down syndrome camp and we went to a parents meeting there, where everyone just kind of talked about problems they were facing and most of them were problems with schools and I remember Jared and I talking later saying We have plenty of time to worry about that right now we just have a little girl  so lets just enjoy that before we have to deal with all of that..…Guess what I have coming up in a couple of weeks..Avery’s first official IEP meeting and I'm a stress case!!  I have knots in my stomach bc I am so nervous. I cant sleep…I toss and turn bc I'm just dreaming about how all of this going to go..What's an IEP????’s a meeting with all the big dogs (like 10 of them to me and only me) iep4
where we set out goals for Avery..”Any child who falls under the Special Education umbrella in the school system has an IEP which means that their education in school should be tailored just to them and to them only.” Here is a blog that I follow where she kind of explains IEPS…go you will see that’s where I found the comics..Winking smile
They wanted to put Avery in school last year but they wanted to put her in a DD (development delayed classroom) with four other kids that were barely verbal and I said no way bc I am actually trying to get her to talk more not less so I don’t see where that was going to benefit her bc she gets all the socialization she needs right now from her cousins (there are a lot down here) and as far as working on preschool things well I can work with her on that at home still..Well now another year has gone by and here we are..I really don’t want to put her in that DD classroom again which I have a feeling they are going to push it bc it where you go when you are in k4 I guess with development delays..the school isnt even our home school…She would probably be with the same kids who are non we are going to try to push for a regular k4classroom..iep5
I am going to let Avery lead her own pathway and she is going to let me know what she can handle and what she cant. and I'm surely not going to let them tell me where to place my daughter when they don't even know her!!!!! Am I in for a battle?????
Well we will see in a couple of weeks…right now you can find me buried in a pile of papers..learning everything..and boy oh boy is there a lot of information to learn…like federal laws that were written to protect Avery..and all these letters for these laws that you have to keep straight…like LRE and IDEA and that is only the beginning..I have to be honest I started to sit down with the SC handbook for special education in front of me and  my laptop had IDEA law in front of me and as I start reading..I just loose it..cant control it…just bawling like a baby…I'm just thinking this is soo much crap yes crap… to learn and I cant do this. I'm not smart enough to keep all of this straight.. How am I going to learn all of this??  I am going to let Avery down…just feeling very overwhelmed/frustrated….but I HAVE to do this bc I am Avery’s only voice and I am her only advocate..she NEEDS me to do this for her!!!  It is just sad that parents are put through the ringer like this bc we shouldn’t have to fight for the best education for our children ( not that I'm saying that I have to fight yet..but just guessing we will have to from others do)  so I am asking begging for prayers of peace and understanding from you all..This is HUGE my first IEP meeting and I just need to feel peace that the Lord will get me through this with the best possible outcome for Avery.


Teresa Matson said...

What a cute birthday post! I'll be praying for your upcoming meeting but let us know before the meeting when it is so you can have special prayers during that time.

Michelle said...

Wow! It does seem like just yesterday that Avery was born... time flies! I love all the excitment she shows on her face!! The cookie looks nummy. :) Will be praying that everything goes well... don't be so hard on yourself, Kristi!!! You have been a great mother to Avery and all the other girls and you have conquered so much already and i have all the confidence you will continue to do so. Keep your head up :)

Clarissa said...

Happy 4th birthday, Avery!
Good luck with the IEP meetings!

Pam said...

Happy Belated Birthday Avery ;) Hope you had a wonderful day. Kristi,I wish you the best of luck with her IEP.

Anne and Whitney: Up, Down and All Around said...

happy belated birthday avery!!! such an adorable 4 year old - love the barbie tricycle that she can keep up with her older sisters on!!!