Tag Archives: Mom

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!

 

 

Look How Beautiful It Is

“Look how beautiful it is outside” you say to your kids as you walk past the window and catch a glance of winter beauty.
Then it hits you and you remember you need to run to the store.
You think ‘its not gonna be that bad’ but as you take a longer look you start to realize that its 4 degrees with a frigid – whatever wind chill out there.
Next it hits you that there is at least an hours worth of shoveling and cleaning off then warming up the car.
Now you remember that you noticed the side door of your van is frozen shut three days ago and know it still is.
You will need to bundle your kids up in so many layers they will barely be able to move. Then those kids will have to monkey jump to the backseat leaving snow all over your seat. So by the time you even get to the store that snow will have melted leaving your ass wet for the walk around the store.
Now instead of just grabbing a few things you will stock up enough food to feed a small army as you surely wont want to do this again anytime soon. Don’t forget how fun it is to quickly pile all the groceries on the belt as your cashier starts to ring you up and your kids start to screw off and bicker between themselves. Next we get to find out how much you overspent. Giving you a giant feeling of regret and a short mini heart attack. Now it gets even more fun as you try to push that cart through a badly plowed slushy parking lot to your van to unload.
When you get back home the kids will have decided that they will need to play in the snow during the process of unloading the van. Then they will be absolutely seconds away from frostbite frozen which will quickly turn into a soaking wet ice cold mess as you get them in the house. They will most likely demand hot luxurious bubble baths and hot chocolate immediately.
Once you get that done you walk back to the million bags of groceries that now need separated and put away. Surely you are quite thrilled about digging around and playing a manual game of grocery Tetris in the freezer right?
Now you are near exhaustion, starving and the kids are yelling “when is dinner?” as you plop down to take your first sip of hot coffee and the feeling in your feet and fingers start to return. Its then that you realize that your ass is still soaking wet from the beautiful snow you sat on to and from the trip to the store.
But look how beautiful it is outside…….

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Family Meetings

Does your family have family meetings? We started doing it a few years ago and the kids really enjoy them. Our favorite meetings are usually held on my bed and anyone is allowed to call one at any given time. Everyone is allowed to speak freely during the meeting and we encourage that the children say exactly how they are feeling. It’s very important not to judge or discipline someone for something they may say during the meeting because it really is a great chance to hear and understand just how each family member is feeling on a regular basis. Use what is said to improve the dynamics of your family and how it works. Remind each other during the meetings that you are all on the same team and the goal is to reach a happy and healthy living environment. Parents prepare yourselves as you may be surprised by some of the things your child has to say. They have become so natural in our home that we look forward to someone shouting “Family Meeting” and we all quickly gather to see what’s going on. WE recently had one just a few nights ago as moving into our new home and all the holiday chaos that was going on I wanted to remind my kids that these meetings and there input are still an important part of our family. I was able to stress the fact that school would be starting back very soon and that I was expecting a better performance behaviorally from both of them. My son expressed that he is not so keen to hear me use a profanity on occasion and I myself will have to work on that. My daughter had us laughing as she took her turn. Her response to my question “What do you think I can do to be a better mom?” was “Well you are doing a really good job and I think that if you could let us celebrate Hanukkah that would make you a much better mom.” I proceeded to inform her about Hanukkah and let her know that we weren’t Jewish and it wouldn’t be right to celebrate a holiday that’s not actually ours. My guess was she was totally down for the daily gifts that would have been received. She is 6 and responded with “well my cousin is Jewish” I then had to explain that it still didn’t make us Jewish.
So think of a few questions and call a family meeting. These meetings should never only be focused on the things that others are doing wrong and I often start them with a few compliments of what improvements that each family member has made to set the tone as relaxed and then we ease into anything that may be bothering us about each other. Now obviously there are a few things that you may want to talk about privately with your spouse/significant other privately away from the children in order to keep your relationship on track. Remember to start off with a few things you enjoy about each other and ease into the things that might be bothering you or causing stress and ill will in your relationships.
At the end of the day we all need to be reminded that we are on the same team and relationships need constant work. If you forget to water your plants on a regular basis they die. Don’t kill your relationships with lack of communication.

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…..

Happiness

My life is filled with all the things that should bring me happiness.

I have kind and loving children, a great guy, fabulous friends, and I do my best to make all the right choices in life. So I am struggling with the fact that inside I’m just not truly happy.

Its not my kids, my man, or even my responsibilities as a mother or wife that aren’t making me happy.

I have said for many years that there is a 50’s housewife stuck inside me just begging for me to let her loose.
Occasionally I do and these are some of the happiest times of my life.

How ironic is it that the things that make me happy are being a mom, a wife, cooking, cleaning, canning, baking and yes even laundry.

So why am I feeling so unhappy lately?

You would think that I should just unleash this 50’s housewife and carry on with life and just be happy.
Well that would be my solution and I would be overflowing with happiness.

I’m a good person, a great mom, an awesome wife, and one of the best types of friends anyone could ask for.
I just lately have this darn unhappiness preventing me from enjoying a wonderful life that I have busted my butt to build for myself.

Well I have pinpointed the unhappiness and its things that are beyond my control keeping me from enjoying life. As much as I probably don’t want to admit this I am a control freak. I have a two big situations right now that I have no control over and sure I can pray over them and even put them in God’s hands but realistically God needs me to do the legwork.

So I have two choices. I can sit around and throw myself a huge pity party or I can get out work my behind off and try to get a handle on these two things so I can enjoy my life. I can promise you the first option won’t be my choice. These next few months are not gonna be easy but I will get through them. My track record so far for getting through shit is pretty good.

I’m in therapy sessions twice a week for my kids but there is a 20 min interval that the therapy is for me. At this point in my life I have completed so much therapy that I can pretty much predict what they will tell me.
No wonder I’m so good at giving advice. Along with that 50’s housewife there is probably a therapist stuck inside me to.

So I’m gonna suck it up, cancel the pity party, put on my pretty girl disguise, my fake smile, and get out there and overcome these two things that are sucking the happiness out of me and I’m going to rule my world.

My biggest goal in life is happiness. Isn’t it everyone’s?

Notes From Mom

I have been getting a lot of calls from school that my son just misses mom while he is in school. I have spent a lot of time reassuring him that I actually miss him to but school is important and he just simply has to be there. As I was working last night on prepping some great projects to bring a little joy to my children’s day I came up with a wonderful idea. Notes from mom. When he is at school and having one of those moments wouldn’t it be great to have a note from mom? So I grabbed a Ball Glass Jar, a few Sharpies, some colored pens, paper, scissors, tape, a ribbon, and printed a few inspirational cards and jokes off the internet and got to work.

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You could jazz up the jar anyway you choose

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I added 5 ‘Golden Tickets’ into the mix. The Golden Ticket gives him the opportunity to choose any activity he desires afterschool as long as he finished the day with a good attitude. He was very excited about the Golden Tickets

After I finished the jar I wrote a nice note to the teacher and explained how it works to her. The jar is to be kept by the teacher and when he is having trouble getting through the day and misses mom and home he can get 1 note from the jar. If he picks a Golden Ticket the teacher will then reserve it until the day is done. If he completed the day in a way that is expected of him then she returns the ticket to him so he can redeem it at home for that one activity of his choice. She can send me a note when we are running low and I will happily refill the jar.

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I’m really hoping that this is going to help him through his days. I am also in the process of making a jar of afterschool questions and another that has fun little topics and questions that we can do at dinner time.