***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.

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.

MEN!!!

My DH makes me so mad! We went to see the physiatrist yesterday. He KNOWS we had to go because I took the day off work to take her. First, he didn't even ask how the appt went. Second, when I began to tell him he started his usual BS of poo-pooing everything & sarcastically questioning things. I asked his stupid questions that he always asks and he asked if I asked about the DAFOs (long story there but the crappy school PT keeps saying she needs a smaller brace or none at all, just a shoe insert, since she never sees her toe walk DUH! She takes the braces OFF to do PT, after she has been stretched with them on! She also only does 30 min which ain't squat!) I told him no, she immediately was on her toes when they were taken off & she stayed on them to walk. Also, how will a shoe insert help pull her big toes out. Also, the school PT said she can't point her foot up in them and the doc said yes she can look, that is why they are hinged now. I told him about her saying to wear the thumb splints at night so she can have them on for at least 10 hrs. His reply- "what good is that going to do?" ~~~fumes & smoke from my ears~~~~~


I then got so mad that I told him I am not going to speak with him and if he thinks he knows better than the specialist go to the appointment for once! JERK!


He half-a$$ed apologized, saying, "I am sorry, I was just asking questions" I told him you were not "Just asking questions" , you were being very sarcastic & second guessing her judgement as well as mine. I still barely spoke to him after that.

I cried myself to sleep last night. Sometimes I really hate him, especially for his complete denial of Meghan's issues.




As far as the appt goes, it was a decent one. Mostly good news as she is making slow & steady progress. We are going back to private PT to help her. Her knees are really turning in do to low tone in her hips. She wants to try to strengthen them & see if we can't prevent it, but she will probably be "knee- knocked" and have the a-frame stance from knees down. She is also scissoring when she tries to run. The school isn't doing enough, giving her PT 1x/month! Why bother? She also made a good point about her going to her zoned school for her preschool SPED rather than being at the one she is at now. The therapists are kind of apathetic there since almost ALL of the kids there have needs. At her new school, it will be way less. As for her Autism treatment, she said it will be better there too. Why? She said to think about it- if it affects 1 in 150 and there are only about 500 kids in her school, then she theoretically is only 1 of 4 with it in her school. Good point!