well..I’m going to do my best to update as often as I can but as of this weekend my mother will be living out her last days here with us.. Hospice is being set up and i’m about to take on 24/7 care of her the best I can with the help of the hospice nurses…I’m nervous and sad at the same time.. maybe that’s normal. I just want her last days to be with family, not in a nursing home…
a week Wednesday, Jun 24 2009
autism autism, family, fun, kids, meltdown, travel 6:51 AM
well it’s been a long week, I haven’t posted as we have had family visiting so we have been pretty busy. Ahmed did really well most of the week behavior wise.. one exception though.. his brother decided to pick him up and he doesn’t like to be touched so it set him off in a horrible meltdown.. it lasted about 20 minutes and I got him to sleep. he has been wetting the bed again this week and pooped his pants 4 times.. maybe because we are out of routine with the family here.. but all in all it could have been worse. going to attempt to update as much as possible- thanks for reading.
Wishes Friday, Jun 12 2009
autism autism, boys, floaties, jumping, kids, meltdowns, pool, summer, swim, water 6:52 AM
I’m gonna make this one about wishes…
I wish my son didn’t have to have meltdowns over the smallest things like blowing bubbles.. it’s not that he can’t blow them.. it’s that he runs out of bubbles and doesn’t understand that things come to an end.. then the meltdown starts. there is NO in between with Ahmed. it’s either “broke” or “fixed” or” ALL OUT”. I can not explain to him in any manner that he can understand that there is a “later” or “we can get more” or “go another day” it is what it is.. it’s what’s right HERE and right NOW.. we are working on it though, maybe his brain will mature over the summer. he was very hyper today, not too many meltdowns..
he made something out of styrofoam pieces he tore up and placed them all in a pattern on the sofa and said “I Made Balloon” it was cute, I made sure I got a picture of that one.
Over the last couple days we have been swimming at the swim club alot and Ahmed has learned how to jump into the water from the side of the pool (with floaties on of course) and we met a young man 21 years old there who is severely autistic.. he speaks well.. socially withdrawn though.. he was with his PCA. I was happy to see him there and hopefully we can get to know him better….
yesterday Tuesday, Jun 9 2009
Uncategorized autism, boys, fighting, hitting, violence 10:48 PM
I didn’t post yesterday as Ahmed was on a roll, quite literally. he was full speed ahead, fighting, slapping, arguing,screaming, hitting everyone yesterday.. especially his brother. so I had to stay in between them both all day. today is almost like yesterday, he is being very ill tempered, violent and impatient, no reasoning with him when he is like this.. I have to take him to a consortium meeting with me today.. I fear it will be a disaster… will update later
A different topic Sunday, Jun 7 2009
Uncategorized autism, children, government, greed, hurricane, kids, stress 12:26 PM
Today I just want to express my feelings, as occasionally I feel like I may explode. Everyday I see and hear so much ugliness and hatefulness it is almost impossible to escape it. yes, I am guilty of bad mouthing others as well.. most times in my case it’s anger or frustration on my part, and I may open my mouth before thinking and for this I apologize.. maybe we are all guilty of this. I want to set a positive example for my children as we all do.
How do you stay positive when you live in a place such as I do? now, I don’t live in the slums, although I have been very close to it several times.. I’m talking about living in a town that has been 100% destroyed by a Hurricane, and have come back to it, breaking our backs and busting our own knuckles in pain daily to rebuild, putting our faith in our local and state government to do the right things for us as citizens.. all to discover that we are basically on our own. the amount of Greed here is astounding..
It amazes me what lengths a human being will go to to destroy another. yesterday I sat outside a courtroom from 9:30-4 pm called as a potential witness as it was just by chance..I sat with people who work directly for our parish government.. I listen to what they say.. astonished by some of it, not surprised by the rest. I witnessed not one but 2 people have a emotional breakdown over an ordeal that may or may not cost them their jobs.. things they have no control over. before I left the courtroom, I hear the judge mention that he is friends with both sides and it would be hard for him to render a decision on the case.. but it went forward anyways.. with no ruling in the end. what the hell is the point? all of this is over a Hospital, which we desperately need.. but it looks like we will have a super-walmart before the hospital. Im going to give thanks for the Dr’s that we do have here now, especially mine- Dr. Bertucci .. I remember back to those first weeks and months after Katrina, and we had nothing.. not even a porta potty and I am so thankful for what we do have now. The hurricane brought many opporotunities and many unfortunate incidents..How do we hold it all together? just some ramblings of mine..
but on a lighter note, the kids had fun today.. we went to the swim club again.. Ahmed freaked out a couple times, but the last one was the one that made us leave.. he has a limit, even when he is having fun.. he is sleeping peacefully now since 9 p.m. and I can go to sleep now also. goodnight everyone.
A good day.. Thursday, Jun 4 2009
Uncategorized autism, behavior, boys, hair, pain, sleep 9:46 AM
we didn’t do much, mostly hung around the house today.. the boys did get a haircut by their favorite guy David.. Ali got a mohawk cause I promised he could if he kept Honor Roll all year and he did. (his mohawk is bright red lol) Ahmed wanted some red too so of course he got it.. there was a little fighting today.. Ahmed tried his best to behave.. I try to keep his mind occupied at all t imes..it’s almost 9 p.m. I gave Ahmed his sleepy meds.. waiting for that to kick in.. last night my back was hurting again so bad I went to sleep on the sofa at 4 this morning.. tonight I am taking a flexeril.. I gotta get some sleep soon! good night all!
ugh.. my back Wednesday, Jun 3 2009
autism and autistic autism, boys, food, ice cream, kids, mental disability, restuarant 4:41 PM
well, it’s 3:35 a.m here. and I am yet again awake with severe back pain.. I’ve been up for an hour now..gonna take another hot shower and probably a sleep aid.. maybe it will knock me back out again…I’m not sure what’s wrong with me.. I’m tense, sore, I feel like a stiff board and on fire at the same time.. how do explain pain? and just plain aggravated.
an update on Ahmed.. we took him to eat with us at the mexican restuarant here in town.. he did pretty good about staying in his seat compared to most days.. he was loud of course and gagged on his food a couple times but it went pretty good so we took both the boys for ice cream afterwards… Ahmed likes Dots…
Bad days… Tuesday, Jun 2 2009
Uncategorized 6:20 PM
Somehow I knew today would be a rough one.. It started yesterday.. the whining and disagreeing, the hitting, the spitting the screaming tantrums.. the usual. This morning he woke up primed for destruction..I medicated him but it’s not working.. glad my friend called wanting my oldest son to come play with her son.. that takes some of the tension out of the house as Ahmed focuses his anger on his brother.. he is calm at the moment.. we rented a video game that has caught his attention (sigh of relief)
On top of everything, my blood sugar is high and I’m feeling like a zombie, my entire body hurts, not just my back.. i’m sore and tender all over and I started my period this morning and that just made my day- that’s just all I needed!! UGH! God give me the strength to make it through today or at least till bedtime.. i’m not asking for much… I feel like crying.. not from pain, just need an emotional breakdown.. but only 5 minutes worth. lol
today Monday, Jun 1 2009
Uncategorized 5:12 AM
A good day….. and sleeping by 9:30 with help of his sleepy meds… thank you God.
Autism Struggles 