Tag Archives: Friends

Being an Autism Mom and Caregiver

By now everyone knows I’m an Autism mom. I don’t think everyone connects the full time caregiver with it.

My days start at 5:30 am. I open my eyes and wonder what I will find as I step out of bed. My awake hours are 5:30am-12:30am. So during the 4-5 hrs I may have slept I often find that my son had woken during the night. On some nights he wakes me up, some he doesn’t. Some nights he falls right back to sleep, but that’s often not the case. I can find my kitchen destroyed, full gallons of milk left on the counter, or his bed covered in whatever container of snack foods he has grabbed and taken into his room. His bedding needs pretty much a daily washing along with the full cleaning of his bedroom.

At 6:00 am it’s time to start waking him up. This is usually a 30 min process. I never know how it’s going to work out. Most mornings it’s like poking an angry bear. I schedule in a 30 min waking period for him. Then from 6:30-7:00am it’s a process of getting him in a functional mood. At 7:00 am it’s time for breakfast which is usually a nightmare due to his sensory issues. One morning crunchy cereal can be perfect and the next he can’t handle the way it feels in his mouth. So at least 4 mornings a week I’m scrambling to find something healthy that fits his sensory needs.

Now at 7:30am it’s time to start the process of dressing for school. Once again due to sensory issues there are no tags on any clothing, no buttons or zippers on his pants, and the pants have to be loose enough that they don’t restrict the positions he feels the need to sit or lay in. Some materials are to scratchy. For instance finding a winter coat for him this year was a horrible experience. Some mornings I may even have to change his socks up to 3 times just to find what feels right to him. Mind you through all of this I am also getting a second child ready at the same time. This process can take up to 40mins.

Now I have to have his mood in a good place before the bus arrives. Some mornings this is the biggest challenge of all.

So by 8:30 am most mornings I’m so heartbroken by the challenges and lots of cruel things that have been said by him during his outbursts and his tearful remorse because he didn’t mean the things he said that I may need a good cry or an hour to lay there in complete silence thinking about how maybe tomorrow will go differently. I’m basically doing an hour of therapy in my head so I can get my day started.

I now have about 5 hrs before he returns home. This may sound like a lot of time, but as I mentioned above my ‘to do’ list has already been started and at any moment the school may call and summon me there.

Now is when I can pull out whatever he requested for dinner. Most days he asks for a specific dinner and by the time he gets home his sensory needs have changed and he may not be able to tolerate either the smell, taste, or feeling of it. Then I’m scrambling to come up with something quickly to replace his meal.

I start off with his bedroom because stripping a bed, washing all the bedding, and putting it back on daily is frankly a pain in the ass. I multi task so once I start there I have a million other things going on at the same time. My breaks are when I can actually check my email, bank, pay bills, plan budgets, file paperwork.  (the amount of Autism paperwork is incredible)

By now  I have about 3 hrs left before his return. I may need to run out for groceries or meds and in that case I have o have someone in my home in case the school calls. Most days I do not even wnt to leave the house as its such a hassle.

Now its 3:45 and his bus arrives bringing him home. He is usually starving as I didn’t even mention above that I have to supply a vast array of food to meet his sensory needs at school.  So now we start the dinner ritual. I’m lucky if I get to sit down and eat with the kids. I usually don’t.

After dinner its time to start homework. I have to split the kids up to do this so they can stay focused and I can endure the mental toture that goes along with it.

Now its bathtime and I haven’t even showered myself yet because I might  as well just take a bath myself before I get to go to bed.

We can now try to do something together or their father steps in at this point to give me a much needed break. If I take that break then I am losing quality time with the kids and I mentally beat myself up for that.

My wardrobe is casual, comfortable, and usually bleach stained somewhere.  So basically if I’m wearing sweats and a T-shirt without a stain then I’m probably leaving the house for something.

Now its about 7pm and we start our bedtime process which usually takes about 3hrs before both children are actually asleep. Once they are finally sleeping I myself can take a bath, put on clean pajamas, and fill out any school forms, check the calendar for the following day, etc.

Now it’s anywhere from 9-11pm so I can actually wach something off the DVR. This is a must have in my house or I would never get to watch tv. I’m usually about 5 episodes behind on anything I really enjoy watching.

Now it’s 12:30am and I am so exhausted, my body hurts, I remember that I either skipped lunch or dinner and that’s why my stomach is rumbling but I’m just to tired to even get back up.

The reason I am even writing this post is because I get really tired of trying to explain why I can’t join something, do something, or its not even worth buying something because I am last on my priority list. No matter what anyone tells me “I should do” I know what it is that I have to do. I live for the weekends and breaks from school. Although it doesn’t change our schedule we can skip a few of the things required of us during the week. So the next time you decide to judge an Autism mom/full time caregiver maybe you should rehink that because that mom probably had one hell of a day!

 

 

Time For More Change

I’m the girl who makes New Year’s Resolutions and actually keeps them. I started this only 7yrs ago. Trust me I wasn’t always ‘that girl’
This year I have made several resolutions. I am going to be focusing my energies in different places this upcoming year. I have wasted an awful lot of time and energy in places it just didn’t belong.
My first resolution is to stop feeling so obligated to people who just don’t appreciate it. Along with that I am not going to allow myself to be upset that they get upset over it.
Next I have great family members that I have neglected for way to many years. Its time to get them back where they belong in my life. I finally feel like I’m someone they could be proud to call family.
We all know that I am probably one of the most honest people around. This year that honesty will reach a new level. I am tired of being uncomfortable in some of my life situations by not addressing issues that are ‘white elephants’ in the room.
I’m going to be a lot more frugal this year and am looking forward to teaching others to do the same. So all of you that tell me that you want to learn how to coupon here is your chance. Follow my blog. It will give you an email update to new posts and although I post it to Facebook and Twitter you just might be overlooking it or not have time at that moment to read it.
I’m quite organized but really want to take that to a new level and some of my fellow blogger friends I am watching and admiring your skills and will be taking lessons from you.
My tiny family will be my main focus as always and I will no longer feel beat up by those that think Autism is an excuse in my life. Its not an excuse its a lifestyle that I live in the best interest of my young children.
I’m very much looking forward to this year as I know it holds many Blessings for me and mine but I know these Blessings are things I have to work for. I don’t get to sit around and have them tossed down upon me.
Happy New Year I’m really hoping to share this year with so many of you and I wish nothing but the best for everyone. Now lets get it started!
My word and hashtag of 2015 is #Winning its about time I win this game of life and catch up to so many of you!

A Very Autism Christmas

Now that the holiday has passed I’m going to declare that its fine to rant about the not so finer points.
From the 22nd to the 26th I felt like I was walking around on broken glass trying my best not to offend or make anyone angry. I have hosted family events for years and I admit I’m so jealous of those of you that have these Christmas events with beautifully decorated tables and houses filled with people who truly are having fun and are kind and respectful to each other.
I walk around so stressed out worried that I got everyone a great gift that they will enjoy as much as I enjoyed choosing it for them. I also freak out because my Autistic child is the hardest person ever to buy for. Even some family members ask if they can just give me the money to order something for him.
I also wear myself out buying, prepping, cooking, and serving a meal that everyone will enjoy. All while maintaining a certain amount of normalcy for my household as having an Autistic child a keeping regular routine is very important. Its not ‘an excuse’ its our lifestyle.
So after all the work, effort, and hoopla of the holiday why am I sitting here wondering why people act like its so hard to just be kind and courteous of each other? Nobody really seems to remember and acknowledge the true reason for the season anymore. Its all just a big show and a bunch of obligations which I already have enough of.
Its not one person individually its just people in general and its not all people but it seems the bad ones sure outnumber the good ones anymore. I’ve seen so many despicable things go on as I see lots of ‘behind the scenes’ things that the average person doesn’t notice. I attribute it to always having to be on my toes from the Autism.
I am not the person that cries poor me as someone always has it worse than I do. I’m the one who gets up makes that pot of coffee and approaches my day with the attitude that I might not want to do something and I might not even be feeling well enough to do it but its gotta get done so lets just get it over with.
That being said I don’t feel the need to explain my current situations with everyone all the time. You may not know everything that’s going on in my life and if you do I sure don’t want your pity but let me go ahead and tell you a little about the person that just put forth so much effort to have a wonderful holiday with you and buy you a thoughtful gift or cook you a delicious meal.
Autism doesn’t take a winter break and either does my Diabetes. We didn’t get a break from therapists, routines, medication times or shots. We haven’t even established a complete routine in our home yet as we just moved less than 30 days before this holiday. I’m not even unpacked yet and haven’t even changed every bill, bank, credit card, etc over to the new address yet. I recently reconnected with family members that I treasure and lost along the way of my addiction and had one pass away just a few days before Christmas. Since Oct I have had a lot going on with my own health and now after months of medications, fights with hospitals my insurance company, and lots of stressful tests I a tumor that’s concerning to the doctors involved and we will see what happens as we start to travel this path. I have my Grandmother who sits day after day in the nursing home depending on others to care for her and each time I walk in the door of that room another piece of my heart breaks. I have the Grandfather of my babies unable to walk out of his front door to the car without the assistance of two adults. I have a daughter newly diagnosed who is having a very tough time adjusting in school while they are calling her ‘extremely gifted, genius, and very mentally ill’ all at the same time.
These aren’t excuses they are my life. I am an adult and I will deal with all of it and I will be kind and considerate of others at the same time. I think I have just learned that my kindness and consideration will have to be from a distance with some in my life.
In the next year I’m looking forward to making more memories with people who have the same goals and attitude that I do.
I’m looking forward to making my New Years Resolutions this year as since my first sober New Year I started making resolutions that I actually keep.

Change and Transitions

Nothing ever stays the same. Everything changes. Sometimes we bring the changes on ourselves and other times life just changes for us.

Lately I had been struggling with change. I have been constantly cheering myself on to not fret about it that it happens to everyone.

Now that he changes in my life have been set in place I find myself questioning the transitions that are going to follow them.

I’ve recently reconnected with loved ones I lost along my life’s journey and am transitioning having them back in my life.

I’m preparing for a move and wondering what changes it is going to bring to my life.

I’m going through that phase in life that we all go through where you find out that friends you have known for a lifetime and went out of your way to support during their hard times suddenly discard you for just being honest.

All of these changes and transitions are going a lot to handle. I refuse to allow them to change me for the worse. In the end I’m once again going to grow as a person.

I’m loyal and honest even when honesty may be brutal or emotional. I’m no good at hiding my feelings. In the past during my addiction I used to hide my feelings and to make myself feel nothing. That’s no longer an option for me and those that know me understand this about me.

So throughout the next month I am going to go through many changes and my life is going to transition. I will do my best to not panic and to do the right thing as the sober me can’t deal with the wrong choices.

None of this is going to be easy and nobody ever promised me that life would be.

I’m gonna be emotional and there are days that I will struggle but I think my life is changing because its just time for a change for the best.

Everywhere I look in my life I see the changes. All the things I have worked so hard the last 6 1/2 yrs for are happening all at once. I think I’m about to have this Zen lifestyle I have desired my entire life.

So why am I dealing with the transition?

I ask myself everyday “Do I deserve it?”

That’s the part I have to work the hardest on of all because I need to learn that I do deserve it…..

Thank You

I just want to take a few minutes to personally thank my family and friends for always being so kind, understanding, and supportive. Its no secret that I have a child with disabilities. I often talk openly about it because everyone I surround myself makes me so comfortable about speaking about it. Its nothing to be ashamed of and I never want my son to be ashamed of himself.
I belong to several ‘groups’ so I can talk to other moms that go through the same things I do. Lately I feel out of place in these groups because I do not relate to these moms at all. My son didn’t ask to be born this way. Its not a curse and he completely depends on me more so because of his daily struggles. Once in a great while I find a mom I do relate to and I friend request her to my personal facebook otherwise the likelihood of us talking again is pretty slim.
I cant relate to the moms who toss their kids into a cold shower when they are struggling and call it shock therapy. I cant relate to the moms who beat their children into submission for displaying behaviors related to their disability. Or the moms who don’t seem to understand that the ‘label’ their child carries includes the word defiant which to me is pretty self explanatory meaning your child is going to be defiant. I definitely don’t relate to the moms who want to give up and hate their lives. I read a post from a mom who had posted about a struggle on her personal page and was bashing her friends who offered advice. I thought to myself she should instead be grateful that she has friends who were actually trying to help her out by giving her suggestions and it really made me appreciate all the people in our lives even more.
Call me crazy but I could never fell good about myself for spanking or punishing my child for displaying things that are related to his disability. My little boy cant help the outbursts that he has but I can help him through them. He depends on me and its my responsibility to not let him down.
I am so blessed to have so many wonderful people in my life that understand if I have to cut a phone call short or if I cant even squeeze one in. I love that although I often cant make it to an event I still have friends that thought enough to invite me anyway and really understand why I cant go. I appreciate each and every one of you and I don’t think I even tell you all enough so thank you thank you from the bottom of my heart for everything you do whether its an invite to an event, a kind word, or even a suggestion. Thank you all for being such wonderful, kind, understanding, and supportive people in my life. Whether you know it or not individually you all get me through my days and I love you all!