Wednesday, November 14, 2007
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.
Wednesday, October 17, 2007
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)
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...
Wednesday, October 3, 2007
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:
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.
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....
Wednesday, September 5, 2007
(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?
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...
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.
Thursday, August 23, 2007
MM appts went well this week.
She saw the immunlogist on Monday- no RA, no lupus. She just has a poor immune system, possibly related to her prematurity. We are to continue to keep her away from sickies, etc (who would have thought after 4 yrs we would still have to live like hermits in the winter). He said a simple illness could be a major one for her- which is true. He is amazed that an illness hadn't hospitalized her yet- we have come close many times, but I have just managed her at home. They will recheck her blood in a year though. Sometimes the bump in ANA is a precursor to lupus & it just might not have showed up yet.
She saw the opthamologist on Thursday. Again, good news. The bifocals seem to be working for the moment. We will continue with those & see how she does. We will go back in April & recheck her. He said there isn't a rush to surgery if the interventions are working. He said they used to rush into it & kids ended up needing another surgery to correct it. I am okay with waiting it out, so long as we don't miss our window to fix it. He said the window to fix is a lot longer than it used to be. So, good news x2!
We have a milestone moment....
MM's crib was convereted into a toddler bed! She asked for a big girl bed & wanted princess bedding. She still has a rail we added to it, but she did great! She slept in it last night for the first time, no problems! She did not want to get out of bed this morning! I can't believe that she is finally out of a crib! It only took 4 years, 4 months, 2 weeks & 1 day- but who's counting! LOL! My baby is growing up.. **sniff, sniff** Happy tears though!
Here are some pics of her trying out the new bed! Nana bought the bedding & made a frilly dust ruffle for it. She is also going to make us some very girly curtains.
Who wouldn't want to sleep in this bed!
Doesn't she look happy & content?
And that, my friends, is one post without whining, complaining or grousing!
Wednesday, August 8, 2007
MM starts her new school tomorrow. Her teacher is coming here in about an hour to meet her. The few conversations I have had & the one my mom has had with her have been quite interesting. Interesting not in a good way. She seems to be quite ditzy. I hope this is just an impression and she does a great job for Meghan. I can only hope. XXXfingersXXX
With MM starting school, I am feeling relief (and guilt for feeling relief). It has been a very trying summer. It has been an eye opener as to her disabilities. She has made some gross motor gains this summer, minimal fine motor ones though. We struggle daily with getting her out of her routines & regimines and engaging with us. With the lack of therapy for summer, her speech has become mostly scripted. It is heartbreaking and scary for I am terrified of "losing her". Losing her to her own little world- we have to fight EVERY day to keep her in ours.
We go on the 20th to the immunologist to get the results of all the blood work she had done. Her ANA is moderately to high elevated. I wasn't really worried at the beginning, but I am concerned. They again mentioned lupus and are very concerned about JRA (juvenile rheumatoid arthritis). I am praying it is nothing for we don't need or want any more labels. We also go on the 23rd to the eye doc. This is supposedly the appointment to decide on eye surgery. I say supposedly cause they have said this before. We will see. A busy month for doc appts. I still have to make her 4 year well visit (I know, I know late!!!), but we had to wait to see the immunologist first.
Lastly, I am worried about my hubby. He seems to be having a hard time lately. He is finally moving in the grieving process of MM's disabilities. He lived so long stuck in denial. He is now in the anger/sadness part. He is also feeling alot of anxiety. It is so hard with men cause they don't talk the way we do. He told me this morning that he could barely sleep last night worrying about things- money, bills, his job, MM's problems, MM starting a new school plus a whole lotta of other family drama. Can anyone say pass the Xanax??? I am worried cause even though he has been in denial, he was more of the rock around here. He dealt with MM better at times and I could always count on him for his undying patience. I guess his patience is not undying for he also is getting tired of dealing with this. As I stated earlier, it has been a very trying summer.
I too am worried about money & bills. We had to bare the expense of private therapy this summer since the school system is so lacking. I had to quit going to the psychologist myself so we could pay for her therapy. I hope that getting back to school will help her. New school, new therapists hopefully equals not having to pay out the nose. It has really made things tight around here. I guess we are stressed cause we have never had to feel that pinch except during my illness. We are not rich by any means, but we are used to being comfortable. We have had to tap into our savings for some of this and I don't like not having a big cushion to fall back on. I have also had to take a lot of days without pay (don't get me started on that cause I have TONS of time, my job is just a bunch of weenies at times) due to appointments & such which just puts the squeeze on even farther.
I realize that being a parent is never easy, but at times I wonder when does the true enjoyment begin. It is constant worry & work all the time. I know that is true of typical parents as well, but I don't know if they worry about every small thing like I do.
Guess that is it for now. Not so eloquent & thought provoking.... just what is on my mind!
Thursday, July 19, 2007
Having a special needs child is very difficult. There is lots of joy in it, however, there is also a lot of heartache. Included in that heartache is anger, resentment, sadness & blame. BLAME- one does alot of blaming. It can be something very hard to get over. I often blame myself in many ways for MM disabilities.
Maybe I should have gone to the doctor sooner...
Maybe I should I have been more adamant during labor about her decels...
Maybe I did something to deserve this.
That last one is a big one for me. Now, I realize that with lots of soul-searching & counseling that it is not the case. I don't feel that way too often any more. However, in the last few weeks there has been something that went on in my life that has caused these feelings to resurface. This is a long story, so I will try to keep it brief.
My brother has been dating a girl for about 9 months or so. Even though she lives here, I guess he initially met her on myspace. She blogs alot about her personal life, often some VERY personal things. She added me as one of her friends & I now have the ability to read her blogs. It is interesting to read things from her point of view. She sometimes posts things about my mom or me & my family. She made one post about a past conversation her & my brother had. It was one of their first conversations. I was reading it & got towards the bottom. Here is what I read, I am however removing the names. (His conversation will be in blue, hers in pink)
8:07 PM They moved here then my parents retired to florida and then my sister was in a coma from having a child and then they decided to move here to help her out
me: my family is in florida
they want me to move back down there
8:08 PM damn you and your sister are sickly
8:10 PM no actually that was the first real thing that happened to me
8:11 PM me: i'm just kidding with you
but my sister is and her daughter has cerebal palsey
me: that sucks
8:12 PM i think it serves her right in some ways cause when we were little she used to make fun of the special kids all the time and i used to tell her
dont do that it might happen to yoo
but her daughter megan is awsome
8:13 PM i love her to death she's the cutest little thing
I have loads of problems with this conversation. First, he can't even spell her name correctly. Second, I was never in coma. Third, I very rarely made fun of special kids. He is not so above me, he was acting all high & mighty. I guess he was using it to get some from this girl. NOW, to say that it serves me right. WTF??? I immediately burst into tears. It is the most horrible feeling in the world to have someone, who supposedly loves you, say that about you & your SNK. My hubby went & confronted him about it. At first, he claimed he never said it. Can't claim that lie- it was right there in black & white on her blog. He then said he was angry when he said it. WHATEVER! I don't care how mad you are, you don't attack me by saying I did something to stricken my innocent child with CP. He then emailed me an apology, but has not made any attempts to speak with me. I sure am heck not going to call him. I emailed him back & said I forgave, but obviously I can not forget.
Children are not born with disabilities to punish their parents. Children are innocent. Therefore by the grace of God he goes. What makes him think he did everything right & is deserving of having typical children? He has a whole lot of issues of his own & often depends on my mom, my sister or me to feed & cloth his children. He has no concept of how lucky he is to have two beautiful, completely whole children. I do believe though that is why I was given MM. I am not being punished. I am not sure what I did to deserve this for I am pretty lucky to have MM. She makes me thankful everyday for all the small things. We get to celebrate every little milestone that she passes for we did not know if she would. She was given to me to teach me to find joy in each & every little thing in life, to not take any thing for granted. She was given to me because I am able to provide for her and be a good advocate for her.
It was disheartening to find out what my own brother really thinks of me. His words, even if from a while ago, stung so bad. Those words have helped to send me back into a funk. I am trying to dig my way out by thinking of all the positives I stated above. He is just continuing to share the prejudice in the world that goes along with disabilities. Here he was claiming to be "Mr. Don't Make Fun of People" and yet he is just perpetuating one of the stereotypical thoughts people have. I found out how closed minded he really is. How sad it must be to be so closed minded, but I guess "it serves him right". He just has ordinary, typical kids. I have a special one <3
Wednesday, July 18, 2007
I have been off the last 8 days with a few more to go before I return to work. It has been nice, but I have also had a bad case of the blahs. Hubby was supposed to take off & he never turned in his time. So, I have been off trying to organize the house. Not going so well. I really need some space desperately around here. It makes me feel like such a failure to clean my booty off & look around to see clutter. I guess that is what happens when you have a child. We have all of her toys plus all of her equipment as well. MM has been a little on the trying side during this time off as well. She has gotten into a stubborn streak with her moods. She is really acting like a two year old, which is great for the advancement in development, but bad for they don't call it the terrible two's for no reason. It is often hard to assess if it is her autism or just her naughty behavior. I feel bad for I am not as patient as I should be somedays. I do enjoy being home cause I get a sample of being a SAHM and how nice it would be- a girl can dream, right?
We have our appointment with the Immunologist coming up. I am not too worried, just mildly concerned. I think we will find she has allergies like I do. I don't think I can take any more bad news. I say that, but I will just deal with it. It doesn't change who she is, just changes how we care for her. Her private PT & OT seem to be going okay. The center, however, is not the most organized. It is a small place that grew by leaps & bounds and outgrew the area it is in quickly. It bothers me that I have to keep reminding them how easily distracted she is and that she can not work in a room full of other little ones getting therapy. Otherwise, they have lots of great equipment. She is doing treadmill training. I read about it a while ago (this is a newer article http://findarticles.com/p/articles/mi_hb4384/is_200702/ai_n18901084) and was looking for a center that had it. I am pleased with her success at it.
She is asking for some "OJ", so I better run... Got one more thing on my mind, but I will post that totally separate. July is over half gone!
Monday, July 2, 2007
First, she tells me- "Mommy need popcorn, please" (this is not a script). You MUST get popcorn everytime you go to Target. MM then gets to the counter & says "Popcorn, please". She then says louder "I said POPCORN, please". (I then must order the #1 popcorn combo cause she must have a lemonade to go with her popcorn). She then gets the popcorn handed to her & says "Thank you, kind sir"- doesn't matter if it is a male or a female.
Now, to anyone else, they would see this as a young child being polite & getting some popcorn. Only we know that it is a script. That is what is funny to me. She is doing something that appears "typical" and yet it is not. Now, if only there was a script she could memorize for every situation in life, then I would never have a reason to worry.
Saturday, June 16, 2007
Saturday, June 9, 2007
The process of making peace with his disability, was no clear-cut step-by-step denial-anger-bargaining-sadness-acceptance a-la Elizabeth Kubler Ross, but rather intense negative emotions separated by periods of equally intense joy and peace and love and contentment.
I have gone back to read this over & over. It seems to ring true for me. Even in counseling, I can't seem to get through the whole grieving process. Why? I think the reason is I am just now, even after 4 years, starting to really go through the process. The first few years were very intense, emotionally draining, hectic & scarry. I never really had time to think about what was going on. I was running from appointment to appointment trying to get her everything she needed. We still run alot, but she goes to school all morning. I now have time to breath & think.
Breathing = Good Thinking = Bad
My heart is starting to accept that she has some life long disabilities. Will she EVER be typical? No. Can I accept that? No. I still have so many negative emotions about the whole situation we have been dealt. I know all the things about the trip to Holland & God giving special children to special moms. Only problem is, a lot of the time, I don't feel so "special". I feel angry. I feel sad. I feel robbed. I feel cheated. I often feel "why me?".
Then there are the days when I feel like my heart is going to explode with pride. I don't think I could ever love a human being more than I love her. She makes my eyes well with happy tears when she jumps across the couch. She fills my heart with joy when she actually looks at me & says "Love you, Mama". On days when she now asks "Up- Mama carry you", I feel contentment. I know so many other Moms will never get the joy in celebrating each & every little thing in life. Other Moms will not ever get to see their little ones struggle from the day they were born and keep struggling every day to do all the "typical" things. In seeing this, it gives you the strength, courage & determination to go on & keep fighting to make her be the BEST she can BE. It is in this that I am starting to find my peace.
Thank you, Nelba, for your beautiful words. In your grief, I am finding more strength than you will ever know.
Friday, May 25, 2007
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!
Tuesday, May 22, 2007
I am starting to crack under all this pressure. Whenever I think about all that I do, a sketch from "In Living Color" comes to mind. The one where it was the Jamaican family and they were always talking about "I got fifteen jobs, mon" is the one I think about. I have too many jobs to count- Mom, wife, respiratory therapist, housekeeper, social/case worker, OT, PT, SL/T, ABA therapist, bill payer, errand runner... I could go on. It is way too much and I feel like I need to be at home when I am at work the majority of the time. I am often envious of other moms with SNKs who get to stay home. I so wish to be a Stay At Home Mom (SAHM)!!!
But on some days, (ssssssssshhhhhhhhhhhhhhhhhhhhhh, don't tell anyone) I am actually GLAD to go to work and get away from things.
And then the guilt sets in....
Wednesday, May 16, 2007
I have a very good friend who just had a baby. I went to visit him & his wife just a few hours after the birth. I was one of a constant stream of family & friends. The baby was great & perfect in every way. They were all sitting there, the happy little family. I even got to hold the little peanut. I was amazed by all of this. Now, this sounds so "normal". Why was I amazed, you ask?
I did not get to experience any of this. I never held my little one when she was just hours old. I never got to experience the joy of a newborn without wires & tubing hanging off of her. I could only see & hold for brief moments. I did not experience the joy of watching my husband hold her & show her off to everyone. I did not have the constant stream of visitors for I was sick myself and I think people are afraid when preemie is born. Unless you work with them or have one, you don't really know what to expect. I also had a falling out with some of my family before I got pregnant and had very little contact with them. SO, only a few came. I did not change her first diaper, feed her first or even get to clean her umbilical cord. I also had to leave the hospital without my little one.
When I left there, I was a mixed bag of emotions. Don't get me wrong, I am OVERJOYED for them- I would never wish the experiences I had on anyone. However, my heart ached. I so dreamed of that picture and it never did nor probably will never come true for us. I don't usually notice the void I have in my heart for things like this until something like this happens. I have come to accept all the things we do as normal. It is our norm, but it is not the world's norm. And when I realize that, every now & then, that ugly green monster comes around &I have to chase him off.
Thursday, May 3, 2007
She was so tiny- a mere 4 lbs 3 oz. We know now that she had IUGR (intrauterine growth retardation), although no one said anything at the time. I asked questions and got vague answers. I was too sick to be able to pursue anything. I kept asking what was wrong with her left foot- it was pointed down and turned in. I was told she would be fine. She had so much trouble feeding. I would ask questions, get a quick answer and then the nurse would go over & whisper to another nurse and give us "the look". I KNOW that look. It is the look we give patients & family members when we know something is wrong, but the doc hasn't told the patient yet. It wasn't until 10 months later that I got my definitive answer as to what was wrong. Our sweet, beautiful little girl had CP (cerebral palsy). Luckily, it is mild. We got all of the things we needed in therapy and early intervention and she was doing well until just after two when things still weren't quite right. More whispering, more looks, more of "have you done this, have you explored that" from therapists. Another trip to another specialty doc and another abbreviation label- ASD (autism spectrum disorder). BLAH! MORE therapy, more work, another thing to make the future uncertain, another stressor.
The loss of a dream, the day to day grind of always needing therapy, everything turns into therapy of some sort, too much equipments, always worrying, always scrutinizing everything, so many abbreviations, so many evaluations, too many meetings....
Wednesday, May 2, 2007
Why the title?
How many times have you heard that line? "He rode the shortbus to school" "I rode the short bus to school" "Did you ride the short bus?" I know I have even used some of those lines myself. We all know what the short bus means- those kids are "special". Most people also don't think of "special" in a good way when it comes to those kids. I keep typing those kids... one of THOSE KIDS is mine. That has become my new moniker- "It's all fun & games till the short bus pulls up in front of YOUR house".
I have become versed in the language of SNK (special needs kids), learned the abbreviations, spent numerous hours in doctor appointments, lost count of the hours spent getting therapy and am learning how to effectively fight the school system; all this while continuing to work nearly full time. The good news is my child is making great strides & will probably be high functioning. The bad news is we have to work everyday to get her there & keep her here with us in our world.
As time goes, I will share more of my journey and the crazy life we live. This is just the start of many posts to come. (I hope..............................)