A Nice Blessing

Being on the road we are on is not easy. However, if we weren't going down this road, I wouldn't have met alot of the people I have. I have friends that I have met in person & on the net because of MM's CP & ASD. I guess it is a reason to be thankful for sure.

I just got off the phone with one of those friends. I was calling to check on her since she has been a little MIA. She had posted a quick blurb about going through a rough spot. In calling to check on her, she made me feel so much better. It is so nice to talk to people who just get it.

THANKS!

BITTERSWEET

That is how I would describe things for us (especially me) lately. Life is just going on around us and I am stuck somewhere in it.

We had a good Christmas. MM was overwhelmed with all the presents she got (we only buy her three, she got tons from everyone else). I had to work Christmas day, but we had a nice little thing Christmas eve. What happened was almost unbelievable. We were at my mom’s eating & then DH went to put the presents out. We told her Santa would come early. He sure did! When we pulled up to the house, Santa (the mail man dressed up) was actually delivering packages with presents! Someone asked her if Santa brought her presents on his sleigh and she replied “No, he drives a mail truck”! LOL…

The bittersweet I am talking about are things like…
THE SWEET- My sister came to visit with her little boy. He is almost two years younger than MM. I was amazed by his skills. He is so funny & cute. I had a blast just watching him & wished we lived closer so I could hang out with him more. My sister was great too. I really miss her & we had a good time just really doing nothing but hanging out.
THE BITTER- MM didn’t want anything to do with him. She was very upset nearly the whole visit. She spent many of the days flapping & withdrawn. It also is such an eye opener to see how far behind she really is. My nephew is passing her easily & she is kind of stuck around 24 months.

THE SWEET- I saw a friend who I haven’t seen in quite some time. Her daughter was born a week after MM. It was great to see her & I loved to hear her stories about her little girl. She climbs trees, she rides a bike without training wheels, she is getting ready for kindergarten.
THE BITTER- Another reminder how far behind MM is. She rides a bike- just an AM-Tryke with lots of help. She is slowly getting there. She can’t climb a tree & the kindergarten part I will address.

THE SWEET- One of my best friends is pregnant! I am so excited! She got pregnant right out of the gate, first try. They just got married in November! What a lucky girl & how lucky I am that she is my friend. She is truly amazing!
THE BITTER- I will never be pg again. We just can’t. Too many risks for me & for the baby. I also had another birthday & I’m not getting any younger. It is so easy for some people & so hard for others.

THE SWEET- IEPs for all the kiddos in MM’s class are coming up. I have heard them talking to the parents when we pick the kids up. Almost all of the them are preparing for the transition to a typical kindergarten class.
THE BITTER- MM’s annual IEP is coming up. We are not preparing for typical kindergarten. She will continue on in a CDC class with some inclusion in the typical kindergarten. All of her classmates (except for one) will be leaving her behind. She is probably the brightest child in class academically, she just has poor motor skills & very poor social skills. We got her report card & she has made very little gains in the last year. She is still stuck where she was a year ago. ***sigh*** I can feel a very long meeting coming on.

I want to add more, but she is standing her having a meltdown about her DAFOs & has a poopy pull-up. I know I have been MIA here, but I have been trying to keep up with all of the blogs I love. Sounds to me like everyone else has a lot of introspection going on as well! Take care & hope to be back soon.

***SIGH***

I am so slack! I have never even posted an update about our vacation. We went to Florida. We only got to go to Disney for one day because my grandma-ma passed away when we were down there. It is just so typical for us to have a crappy vacation. MM did well. It took her a few days to adjust to being there, but she had a good time. Her cousin "B" is only six months older than her. He wanted to play with her so bad. He kept saying "MM, stop ignoring me", "MM, are you listening to me?" then we heard in the tattle tale voice "Mom (or grandma or aunt t), MM's ignoring me". Tell me, how do you explain autism to a just turned 5 year old who has never experienced it? He had tons of questions about her DAFOs & why she couldn't run like him or jump on the trampoline like him. He was also very kind to her. He would help her & lift her up & carry her (did I mention he is a head taller than her & outweights her by about 35 lbs??). She wanted to climb the tree, so he lifted her up & put her in it. I wish we lived closer to cousins, I think it did her good. By the end of our time, she was asking for him. She also seemed to be a bit smitten with her older cousin "D" & he too was quite good to her. She actually hung out with her grandma some which was a first.

Things are going so so in the marital department. We had a huge fight the day after we got back. The worst part was he got so angry over something so silly. I am giving him one last chance. I know he is having a hard time himself with all of this, but get some help or something. I can't take it any more. I am just miserable at times & all of the extra stress doesn't seem to help. I hate to become a statistic, but I think I read somewhere that over 60% of marriages with a preemie end in divorce & 80% of marriages with a child with ASD end in divorce. Odds not in our favor. I guess I am just getting tired & don't have much of a fight left in me. I have to fight for so much & I am spent. I really think I am in the middle of a serious depression. I just can't seem to get motivated to do anything. All I want to do is sleep. Not a good thing when you have a million things to do at the house, have to work & keep up with a SNK.

I always seem to be whining any more. I just, for once, would like to be cut a break. When does it get easier? Is life always this way & things just seem magnified cause of all the stress? I don't know. I gotta run cause she is stinking up the house with a poopie pullup.

IEP Update

Well, it most certainly went better than I thought it would. The OT was actually much nicer in person. She had a lot of good suggestions. She also did some research in talking to MM's past OTs and ***GASP*** she actually went back & read MM's file! Imagine that- did some digging about a person you are caring for! They had already ordered her some more adaptive things like an elevated surface with a clip at the top to hold her work as well as some writing implements. They are also going to do the Wilbarger brushing again with her at school to see if it helps. They are also going to get an AT (adaptive technology) eval for her- FINALLY!!! She will get her keyboard & other things so she can "write". They think that her "disabilities" are getting in the way of her "super abilities". They are going to concentrate more on tapping into her "super abilities" and see how far she gets. For example, she is going to start the kindergarten reading & math curriculum. When I posed the question about what are they doing to help advance her education, the principal agreed. She wanted to know why that wasn't already being done. They feel she is bored since she is reading & they are talking about "this is the letter S- see S- S goes sssssssssssssssssssss". When the rest of the class is working on that, they are going to take her to a different area in the room & work on more advanced things. They will continue to work on fine motor grasp & such, but are going to teach her the keyboard for work like spelling words. She still does not make lines consistently, let alone trace letters or anything like that. They are also going to work on more self feeding with utensils, if they can get her to eat. She has really become a nitpick again with food.

They all agreed that she has some massive splinter skills & is at 19-21 months in some areas & in the 5-6 years range for others. They also said she is such a puzzle to figure out. She doesn't have a large number of problems that some kids with ASD or CP has; what problems she does have are severely hindering her progress. I like what they said about focusing less on her "disabilities" and tap into her "super abilities".

I also talked to the principal about the bus situation. It did not show AGAIN today until 7:20, when she should be at school. This is the 5th time this year. She had no idea the bus wasn't showing up. She agreed it wasn't appropriate and filed a formal complaint. She said if the regular ed buses show up on time, why can't the sped one? I agreed & so hopefully that will be another issue solved.

Now, we only have to get through the physiatrist appointment tomorrow & then we can think about vacation! (which we are attempting to venture away from home starting Saturday)

Today is the Day

UGH! Today is the day- the dreaded IEP. I am so not looking forward to this. I hate confrontation when it comes to my child. I just can't imagine that this OT has changed her ways overnight & will be miraculously reasonable. I could be wrong. I have EVERYTHING crossed that is will go well. I can't hold my breath that long. It is at 12:30, so if any of you who read this happen to notice the time, could you say a little prayer for me? I need to be calm, collected, assertive, passionate, use the right wording & NOT CRY! I'll let you know how it goes...

Time Flies

Can't believe it has been almost a month since I last wrote here (not that I have been doing this that long, but it also means I have not been posting on any message boards as well). Sometimes things just get so hectic & time gets away from me. I am just astonished that it is October! Of course, we have a lot going on. This month also is appointment time =P


Let's start with the good news:



We got our AmTryke! It is awesome! We are so excited to have her out there riding it. The weather has finally broke here and it is low to mid 80s so I can actually do things like take her to the park to ride. She doesn't get very far yet, but she does try. She tries really hard when she is motivated to do something like pick flowers or play "kerplunk" (throwing rocks in the river or creek to hear the "kerplunk" sound).

We have also gotten new DAFOs

I didn't realize how much she HAS grown in the last year until you see her old ones next to them. They are similar to the other ones, they just raised them up to nearly under her knees. Hopefully this will work with some of her knees turning in & giving her the A frame stance.


The bad news:

SCHOOL

The friggin' bliggin' @#$%@#%@#$%^&&**@##@% school system SUCKS! I am so sick & tired of fighting all the time. I finally spoke with the new OT & she started off the conversation with "Let me tell you something about MM" in that flipping know-it-all tone. Of course, that made me jump up like a cornered cat. This OT was unreasonable & would not listen. She even tried to tell me that where I have been taking MM for private therapy didn't exist. This woman is Nucking Futs! I finally had to get off the phone (I was at work) cause I was ready to blow. Because she is unreasonable, I now have to sit through ANOTHER IEP meeting on October 17. Woooohoooooo...........................NOT!

The teacher tried to tell me I need to let her know who I am bringing to the meeting. She said she needs to know so she can invite them. That is BS! I have NEVER done that before. I can sign them in when I get there. I think they are afraid I will show up with my private OT or an attorney. Just ridiculous. I truly believe these people try to wear you down & they are used to ignorant people who don't know their rights. I will take them all the way to due process & mediation if necessary.

We are also having problems with transportation. It is unreliable. The bus has failed to show up four times in the last 8 weeks! I called the head of transportion & she said we have to call the contractor. I am going to call him & then I am calling the school board. It is just unacceptable. It throws off MMs whole routine, which in turn makes her day awful. Kiddies with autism need that routine. I am going to be writing some letters as well.

LIFE

With all this BS going on, no wonder I am stressed out! I am also back to battling my old friends D & A (depression & anxiety). It is so bad that I am having asthma attacks from it. YUCK! I just wish you didn't have to fight so hard for what is your child's right. It is hard enough taking care of a child with disabilities & then having to battle the idiots along the way. I know we are just at the beginning of things here, but come on! NOTHING is easy when it comes to this stuff. Then seeing someone on TV like Jenny McCarthy saying all she did was change his diet & Voila! NOT- the media is failing to promote how much she has spent in therapy, over $2,500 a week! Who can afford that??? How about showing the plite of middleworking class people like us who don't get handouts, but can't get a hand up? I understand it must be hard for her as well, but alot of my stress would be relieved if I could totally pay for private therapy, an aid & a private school. However, I can't.

And so I whine....

Helping Out or a Handout?

There has been much discussion (read that as arguing) going on at our house the past few weeks. I don't believe I mentioned here that MM is on the Ambucs Wish List for an AmTryke

(the trykes are awesome but ridiculously expensive). She tried it at therapy and was actually able to make it go. I am very excited to get her one so she can get stronger & actually ride a tricycle like a typical child. All of this sounds like a good thing, right?

WRONG!

The mister is very touchy about money & such. I sent out an email to all of our friends & family about getting her a trike. Replies started pouring in that they had donated to MM's bike fund (it IS tax deductible, a very worthy charity to donate to knowing exactly where the money goes). My FIL called on Sunday to say he & his wife would give us the rest of the money to get the tryke! WOW! Good news! Then they called us again yesterday to say that FIL's mother in law (so MM step grandma, complicated!!!) & a neighbor had given him money as well. It was quite a bit of money (>$100). FIL said that he & his wife still wanted to buy the tryke & would give us the money to put towards MM's private therapy. Still good news...

BUT



As I said, the mister is very touchy about money. He also has a strained relationship with his father. He does not want him to buy the tryke, nor does he want the extra money. He says he will get it, get another job, HE will provide for her, etc, etc. RIGHT! Get another job- he complains all the time about going to his regular job. I am also exhausted all the time trying to work full time myself plus do all the housework, errands, appointments... At least I get a minimal break when he comes home cause he does play with MM in the evening. If he were to get a second job, I would never get a break and probably have a nervous breakdown. We are not millionaires, hundred thousandaires or even ten thousandaires! We have been struggling to pay for the extra therapy & such all summer. We have spent countless hours going to & from, at & doing therapy for her. We have spent thousands of dollars in equipment & medical bills. We have provided for her again & again with minimal help. Sometimes one can not do it ALL alone. I am so angry that he is being pig-headed & won't swallow his pride. I feel like he is with-holding from my baby. This is something that she needs & will allow her to do the things a child should!

Being a parent is about sacrifice. Being a SNK parent is often total sacrifice. He needs to quit making this about him- it is about MM & her needs. He needs to suck it up and realize this is not a hand-out, but people helping out MM.