Friday, April 17, 2009

Dear Noah.......frustration and lack of motivation.......

are apparently contagious. You have not wanted to do any school work this week. In fact.....lately it has been very difficult to get you to come in and do any school without dramatic rolling of the eyes....heaving sighs.......stamping of feet. It is exhausting.....

I have had a very difficult time keeping UPlifted about anything. I have had a difficult time this week staying focused on get those 8 hours out of the way first before even attempting to do any school work with you. If I am successful...there has still been a big price to pay. You still buck me the entire get frustrated....then I do.....

I am cranky this week.....I feel a bit mad at the world....I am short with you at times which I don't want to be...we have accomplished very LITTLE school work. There is also the pressures of state mandated testing next week on 3 separate days which I will need to drive you to in order for you to take them. More stress..chaos to our routine.

Getting you dressed and teeth brushed every day has been challenging as well......and a bath.....well.....another story. I am thankful to get you in the actual tub once or twice a week. The rest of the time it is nothing or a quick wash off at the bathroom sink.

Soon I find myself just not wanting to do anything. I feel like giving up. Between working full time and doing homeschool with you....through the regular work week I have little time left to do much of anything on any given day anyway.....and on the days I do have time.....I am usually so tired I just want to do nothing at all. I could use help. I don't have help. It is all just me and you. It is a lot. You need time here at home for therapy work too....and I have had little time to devote to that. I take you to therapy 2-3 times per week...but it is not enough. You need more than that. It helps but we need to do some here at home as well. I must make time for it. No excuses. Same for school. I have to sit down this weekend and make a better schedule for us...for we can actually get some things accomplished without such a struggle.

I start my day by waking up at 3:50 a.m. to begin work at 4:00, that way I can be done working by 12:30 p.m. so we can do school in the afternoons. However this week I have struggled getting started in the morning and struggled further just remaining seated in my chair and then have had almost NO time left by the time I do finally get my work finished to do anything else...I barely have time to dress myself or take a shower or brush my own teeth.

I am not complaining although it sounds like I am. I am so thankful I have a job that I can do from home and it is flexible and I am blessed. I am thankful we can do homeschool whenever we want as well here from home. Another blessing.

Sometimes I just wish things would flow a little smoother and a little easier. I get tired of things always having to be such a chore to get even the simplest of things accomplished. Everything becomes overwhelming and daunting. I get no sick time off. I have no substitute to pull weight if I get sick or just don't feel like it one day. I also have no great insurance plan anymore that would cover for me if I ever would be sick...without me probably being forced to file bankruptcy to pay the bills. I have a high I will always be paying up front for my infrequent visits to any doctor. Which means I will go even less. Which means I am pressured to take even better care of myself....but at the same time I neglect it because I am too wrapped up with everything else. It becomes a catch 22.

I need a serious mental health week. I need time to finish this office/school room and get the rest of the house in order.....along with other things. I need time to make you a schedule to follow every day so I do not have to constantly remind you of what you need to do....things you should be doing on your own now without a reminder.

I need motivation. You are my motivation. And yet I am the one who has to tell myself to BUCK UP BABY and do whatever I need to do in order for us to continue to this rented the school......make it another day ..another month.....another year.

And your has to improve. You are way too limited in what you eat. You must try new things to broaden your food choices. I cannot afford to take you out to a place to eat every day and that is not healthy anyway. Seems lately I cannot make anything just right for is "too brown" or "not brown enough"..."too dry" or "it smells funny". So another thing gets crossed OFF your list instead of something being added to your list of choices. Your list has grown smaller this week alone. What you used to eat you eat no longer..for now anyway....but the problem is nothing was added to replace that item.

Today I must pry you out of your pajamas and get you into the tub. I must wash your hair. You lost one of your loose teeth yesterday when I finally got you into the bathroom to brush your teeth. You stayed up way too late again last night.

Sometimes the conveniences and options that go along with working from home and homeschooling can also cause us to realize we don't HAVE to do anything if we don't get dressed...etc. BUT....except for a pajama day occasionally..we both need to get back into the routine of getting up....getting dressed and ready for the day.

I could go on and on...but now I am even further behind on my work load.

I love you Noah......regardless. I hope you feel the same for me because I certainly feel like I should be doing so much more for you than I am able at this time. There is just not enough time or money in most cases....and I need my job to pay our bills.....and I am thankful for that......again don't get me wrong. I want and need to work full-time.......but that really cuts into the quality of the time we do have left in our day. I am not asking for that job to be cut in any way to improve the quality of our days together....I just need to figure out other ways I can improve it.



Betsy said...

Well, I just read this post, along with the one that comes after it.
Big hugs to you! I know I have three boys with autism to deal with, but I do have a husband to help, and I have a school system that I am happy with. I can't imagine doing it alone! You inspire me. Sure, you get frustrated and burnt out like I do...but your love for Noah is amazing. He is so fortunate to have you! I hope you feel some encouragement and inspiration to keep going! (me, too!)

Anonymous said...

I don't know how you do it. I was tired just READING your post. Melinda-you have GOT to figure something out. I know Noah is very difficult-I have a child with Autism as well, who at one time was such a mess I did not think I would ever see the sun. I can tell you this, without a doubt-you have to go through a little pain to have any gain. Remember that. YOU set the rules-YOU stick with them. He may tantrum for weeks-but do not ever back down. Once he gets used to what will come every day he will get better. The food thing drives me crazy. If I had let my son eat whatever he wanted, he would be eating maybe 2 things today. He still is a bit picky-but we tend to get too frightened by our kids reactions to enforce rules. Stop taking him out to eat so much. Keep it as a treat-a motivator to get him through his school work. Make a "rule book" that has to be followed. If he does not like what you make the way you make it-let him go hungry for a meal or two. He will NOT die. He might be hellishly pissed off, but you cannot use Autism as an excuse. I battled, and fought, and put my foot down and now all of that hard work has payed off. You are alone-and I feel for you. I had no help either really-no family where I live, no friends I trusted. As an outsider who reads and loves your posts, I see that Noah runs the house a bit. You are tired and worn out and it is understandable that you would not want to make waves. But because you love him so much, know that you have to be a bit of a "bitch" to get him to be a better person. Have you ever looked into some respite care? If not, you should think about it.

You are not going to make it at this rate-and that won't do Noah any good if his mom is not well and happy!

Melinda said...

thanks for the encouraging words Betsy

Anon...I do not take Noah out to eat all the time now. It now is more of a treat or only when necessary. He understands it is too expensive and not healthy. I am working on getting him to try new foods and make some additional choices. However...I am not using Noah's autism as an excuse although it, along with his sensory integration disorder, does explain why he is so limited in his choices of what he can smell, eat, taste, feel, etc. The way you handled your child may have worked for your child and I am thankful you found a way to work. I do not agree with making Noah go hungry for any period of time to try to coerce him into trying something new....something he may never ever eat his entire lifetime. I am fine with that. He can eat what he can handle. I will never be a parent to force him to eat anything he gags and vomits on or cannot handle. That only associates terror and angst with the feeding issues which makes them worse. At least it has for Noah.

Little by little he is trying a few new things....small tastes....notices things smell good. I take advantage of those moment and opportunities to get him to try something new and he usually will. Sometimes he can handle a small bite...and I mean tiny. BUT he does it. These are all steps to the larger goal...where he can hopefully incorporate a few more choices here at home he can I am the one that feels horrible feeding him the same old stuff all the time. He does not mind fact he likes it that way.


I also do not feel Noah is difficult....he can be trying at times when it comes to doing his school. Once we do it though he is is just hard sometimes to get that ball rolling. Noah is actually easier to take care of and handle now than he can entertain himself for long periods of time now where before he required constant supervision throughout the day and at night.

I did qualify for respite care....but did not like the 2 choices this county gave for providers of the respite care. The situations were less than ideal and I am not receiving any help from the county even though we did qualify for it. I believe now with me working full time I would probably no longer qualify for help. And that is fine.

I just needed to vent. Everything is fine and we are back on track today.

Thanks for your visit and input though.

Melinda said...

oh...I also DO set the rules and we do follow them in our home. Ask Noah.....haha....

I know it appears to some he runs the show but trust me...he does not by any means.

Anonymous said...

well it is good that you have a handle on it-sometimes in your writing you come across as though you are ready to throw the towel in. going it alone is so crazy hard and you have to do what you can to get by, but
just make sure that you take care of you first-you are the best that he has.

Jodi said...

Melinda,tears come to my eyes as I read this...I feel your pain and struggle to a have no idea how this hits every bone and breath in my body....