Thursday, April 30, 2009

Do I whine too much?

I don't know if I do on this blog.

I sometimes look at all the other blogs & see how much everyone writes about sunshine & rainbows. Don't get me wrong. We have sunshine & rainbows here. At times, they are just few & far between. After all this time, I guess I am still: bitter, angry, shocked, sad, depressed, etc. I have tried some counseling & of course the lovely meds. I guess it isn't enough. I still go through these long spells of dreary sadness.

Right now is one of those times. I feel overwhelmed by my life. It seems we can't get ahead no matter how much time I spend running. I hate that I feel as if I always have to clarify myself to others with statements like "I AM very thankful she is doing well, but...". She is doing amazing & beyond so many others. I feel guilty cause she isn't "disabled enough" at times amongst our disabled friends. I worry so much about the past (which I know I can't change), the here & now (am I doing enough, will it ever be good enough?) and the future (what will it be?). I can't seem to forgive myself for what has happened to my precious daughter, even though I did not solely cause it.

I mostly blog about the bad times cause this is where I "talk" it out, get it off my chest. This is where I come to stomp my feet, pout and scream about things. I guess I just am not a blogger who wants to write about how wonderful it is to live with ASD/CP all the time. It can be rewarding, it can make me feel blessed beyond all others. It also can be hardwork, tedious, heartbreaking and unfair.

I apologize if I am often a downer.
It's my blog and I'll cry if I want to.

Wednesday, April 29, 2009

Literally Autism

MM's new fascination is directions, maps, countries, continents, etc. She always asks "where is this, where is that". We were getting dressed after her bath.

MM: Mommy, where is Argentina?
Me: In South America.
MM: Mommy, where is China?
Me: In Asia
MM: Mommy, where is Antarctica?
Me: Meghatron, I think we need to get you a worl.d atl.as or a globe. Do you know what a globe is?
MM: It's a sphere. (with duh intonation, like why are YOU asking me this?)

Me: stunned silence, then a chuckle

Tuesday, April 28, 2009

Crisis Semi-averted

The IEP went okay. The area that I thought they would bulk on the most they did not. MM will still be restrained on a short bus. They realized that she can't step up on a regular bus alone (DUH), can't be properly supported on a seat in a regular bus (DUH) and doesn't have the trunk strength or good enough protective reflexes to keep her upright with sharp turns, etc or if there was a crash (DUH). I am quite sure we will battle this again next year, but for now, score one for us. I don't know why they make you jump through hoops for something as simple as her safety.

They denied us ESY. Even though the teacher recommended it, they said she did not need it educationally. I still have time to think on this one. The summer program they have offered the last few years was okay, but not great. (The only great thing was the teacher. It didn't offer enough to really help her and it was in the worst part of town. Seriously, a crack dealer was on the corner there in the mornings) We are going to send her back to a mother's day out (MDO) group that she went to last year. The lady that runs the program actually came from the special ed preschool she went to. They take all ages in the summer & do lots of fun things. They also all did a wonderful job caring for MM last year & adapting to her needs. Honestly, they did better than her teacher this year, IMO. I like the fact that she won't be tied down to school per say & we will see how she does. She can go to the MDO when we want or we can not send her. With ESY, they take attendance. If she does not do well when school starts, then I doubt they will deny it next year.

I still can't figure them out. One would think after all this time (3 years in the county) I would have some understanding. I don't. The things I think they will give a hard time about, they don't. At the annual IEP, the bus was a huge battle we were fighting. They just wanted her on regular transportation, no supports or anything. They did a total 180 with that. The ESY I thought was a slam dunk. Wrong!

Thank you for all your kind words of support & great advice.

One more thing. If you get a chance, can you send up a prayer for DH. We had to take him to the doctor today. He had to have an EKG & lab work. He has been having weird spells. They don't think it is his heart. He didn't see our regular doctor either. The fill-in seems to think it is stress/anxiety. I am hoping that is all it is too. I think he has needed help for a long time & is now finally at his breaking point. They gave him a script too, so he is joining the xanax for lunch bunch. Please pray it is something simple. I just can't take any more bad news. I really can't (for i too am beyond my breaking point. i think it is why i can't get well myself).

Sunday, April 26, 2009

Crud

That is how I feel like. Once again, the rotten sinuses have gotten the best of me & moved on down into my chest flaring the old asthma. Yuck.

We have our IEP on Tuesday morning to discuss the ESY & the bussing issues. I hope we can come to an easy resolution. I got some great advice from some wonderful people in addition to a letter from the doctor. Can't see how they can turn down the ESY. Her teacher said she needed summer school at the parent-teacher conference a few weeks ago. The bus is another story. Yuckier.

MM has been really out of sorts. Some of her old "ticks" are back as well as the new ones going strong. Feeling poorly, I am out of patience. I hate that, but I feel trapped by her ASD. This weekend has just been a bummer for me. The weather was nice, actually too hot when you have a cold type thing. I hate that I feel like this. I don't want to be trapped by this. I just need to figure out what is going on with her & help to quell the stims. Yuckiest.

Btw, we ran to Tar.get the afternoon. I heard something that made me so upset that tears started to well. It put things in perspective for me. A cute little girl, probably about 4 was saying "who is going to carry me & hug me now?". Her mother replied to her "just shut up. you are driving me crazy. you don't need to be loved on all the time". WHAT?!? It was all I could do to not tell her to thank her lucky stars her daughter was asking to be loved on and wanting to interact with her. She had a wonderful, healthy, neurotypical child. I wish my child would ask me for that instead of asking for directions for the 5 millionth time of the day. DH was with me, so I bit my tongue.

Yuckiest beyond yuck.

Saturday, April 25, 2009

Awesome Crowns for ABR

Alright. I have a blog I have followed for quite some time. The owner of this blog is Melanie. (her button is the better than normal one on the side) She is a super cool Mom with a huge age range of kiddos, the smallest who has SN. Daniel is one of the cutest boys on the block! Anyhoo, they do some totally cool alternative therapy called ABR (google it. I am lazy today). They make some awesome crowns to supplement for the ABR. You can actually win a set of these crowns right now on Her Blog!

Check it out! If you don't win, how about ordering a crown for your kiddo? I did not get one ordered in time for Meghatron's birthday this year. She even has a cool Mother's Day crown right now.

What are you waiting for? Go on... go enter! BUT be forewarned... I'M GONNA WIN! I have to win something!

Sunday, April 12, 2009

No Coincidences

We had a yard sale on Friday & Saturday. Not so great weather. Friday we got rained out till about 0930, Saturday was muddy, cloudy & got cool. We persevered & got it done. We made quite a bit of money (it was our household & my parents). It was so relieving, purging of clutter & making money for it.

As we were selling, a very kind lady stopped. We struck up a conversation. She gave me a business card cause she is a chiropractor. I asked her about treating children with ASD. She began to tell me the story of a boy, now in his teens, who was non-verbal when he started recently coming to her. Not only did he have ASD, but he had a stroke in utero & has mild CP as well. (Sound familiar?) He now is talking. She does adjustments as well as practices herbs, vitamins, etc. We talked about supplements. I am going to give her a try & see if we have any big break throughs with MM. She also told me about a lady in her 40s who she treats. She has Asperger's & talks easily to the doctor, as she has been coming to her for years. She has a college degree, a job & lives on her own. I gave her my phone number & email address. She said she would speak with the lady & would hope that she could be a mentor for MM.

I am very excited because she has already emailed me. She is actually eager to communicate via email & meet in person. She is willing to answer my questions about living with ASD. She also wrote this lovely comment:

I just want to tell you that doctor's aren't always completely right because I think that the power of the human will and the human spirit can defy a diagnosis and I don't think that anyone can be totally accurate in their assessment of what another can accomplish.

Wow, huh? She sounds pretty amazing & I am very excited to communicate with/meet her. This gives me such hope. It is just what I needed with the impending IEP coming up. Hope.

Having this sale was no coincidence. The Man upstairs set me the good doctor to deliver me hope. Thank you, God.

*btw, the doctor bought my train table & Thomas stuff for kids to play with in her waiting room. really cool.*

Thursday, April 9, 2009

6 Already?




I can't believe it. As I am typing this, the Meghatron has turned 6 today. She has had a great day, enjoying her favorite pizza, cake & presents.


In some ways, time has flown by so quickly. I want to slow things down. She is growing up way too fast, getting so big. Savor each moment, like yesterday. We met one of our dear friends at a restaurant. They brought MM an ice cream with a candle. She blew out the candle. I asked her if she made a wish. She said, "Yes, I wished a happy birthday to me". We all laughed. She laughed cause we laughed, even if it was her canned laughter. (I am proud that she is attempting to pick up on social cues)


In other ways, time has moved so slowly. I can remember the day she was born like it was yesterday. I remember her time in NICU and how raw & numb I felt. I remember the pain my heart felt when she got diagnosed with CP then ASD. I can't forget all the hundreds of hours we have spent in therapy, doing therapy, going to & from therapy. For me, her life has been constantly measured, scrutinized every few months. We measure moments by "inch stones, not milestones" as one of the fellow bloggers says. It is at these times that her life seems to be moving so slowly.


Although this hasn't been the six years I envisioned, it has been wonderful. She is growing and making wonderful progress. Her brains, humor, charm & looks are incomparable. I love her so much & can't wait to see what the next 6 years will bring.


Happy Birthday, cutie!


Monday, April 6, 2009

A GOLDEN TICKET

Well, not really a golden ticket, but an egg. Yes, a golden egg. I know you are wondering why I am posting about a golden egg. Of course it is cause Easter is coming up. But a golden egg... so special.

My sweet girl got to participate in an egg hunt on Saturday. They divided up the groups. They let us out the door first so she wouldn't get trample by the others. She slowly went about her business, having me help her look for eggs. As she would look, some of her eggs would fall out. I tried to get them as best as I can, but the other children kept taking them. The other children were running all over, snatching eggs as fast as they could. We moved off to the far side of the hunt, finding a quiet area with some eggs. She found a soccer ball egg, she found a pink egg, she found a purple egg. Then, off to the side in the grass, she saw a sparkle. She reached down & grabbed it. It was a large golden egg. She remembered the leader saying you wanted to find a golden egg before sending them out on the hunt. What did the egg mean?

She won a BIKE! The grand prize at the hunt. I was so proud of her & so excited for her that I started to cry when they told us what she won. She kept saying over & over "I found the golden egg, got a bike!". She can't ride it. She sits on it & we push her around. She is so happy to have a typical bike. The church was very excited to have a SNK win the egg hunt. It made their day, although sometimes people mean well but say some weird things. She will have her photo up at their church.

So, the moral of this story is slow & steady DOES win the race!

***have pics to post but can't due to the viral illness of my lappy****

Sunday, April 5, 2009

Alrighty Then...

Does THIS mean that I won't have to fight, argue, cry, etc to keep my child on the appropriate bus & get her ESY this year? We have another IEP meeting on the 28th to discuss these things. I can't wait to hear what they have to say. I am getting well armed with some great advice from some super advocates. Anyone else having any advice, please let me know. You guys are the best!

(An aside here- I know I never posted the update from the meeting earlier this year. One of the crazy things they want to do is put her on a regular ed bus. A child who has CP & wears DAFOs along with ASD who is beyond easily distractable. They are such idiots, I swear. I am prepared to take this to the media if I have to, especially with it being Autism Awareness Month & the recent problems our county has had with ASD kids & lawsuits being filed against the school system due to major compromises in safety. I need to post all about this when I get a chance. Don't know when I will though with the lappy being broken)



My computer is very, very sick right now (I stole my mom's lappy). I don't know what is wrong with it. I have done everything I know & it looks like it will be going to the ge.ek squ.ad this week.