Tag Archives: Therapy

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!



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.


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?

Broken Homes

I grew up in a household that didn’t take the sense of ‘family’ very seriously. I have very few childhood family memories. I never met my father that I knew of but have heard stories that in times during my life he saw me without me ever knowing. My bio mom as I call her was married 4 or 5 times (I lost count) and had other live in boyfriends in between these marriages. I have one sister that we share the same parents and then I have numerous siblings that we share a common bio mom. I have zero memories from before the age of 5-6. I am told that when I was in kindergarten my 1/2 sister died of cancer. I don’t remember it. I don’t remember her being sick. I don’t remember anything in my life before that. I am told that my Grandmother (bio mom’s mom) kept me as a baby but I don’t remember it at all. I think my earliest childhood memory is of a yard that we had and of a hallway that led up to a friends house that had a funny smell. I also remember waking up in the middle of the night screaming because I was being hit in the back. I was told it was a ghost in the house we lived in but I am very skeptical about that. I have no memory at all of the first two husbands bio mom chose one of which was my father.
I have fond memories of husband #3 He was a hard working man that drank a lot. Drugs and alcohol were such a common thing in my life I just assumed it was natural and everyone’s lives were like that. Husband #3 gave us what I recall to be stability. We had a nice house in a good neighborhood, I had friends, I was able to stay in the same school and I had an Uncle who I adore in my life. I was allowed to have pets and it was my first ever feeling of ‘a family’ I remember Saturday mornings going to the tavern with husband #3 and drinking Shirley Temples and being given quarters to play the bowling machine and jukebox. Alcohol and bars/taverns were a perfectly normal thing in my life. During summer BBq’s it was our job to run and grab cold beers from the refrigerator for the adults.
Then the memories of my dads side of the family come. Life was nothing like this during my visits there. We took vacations, went camping, went to amusement parks, and its the only time in my childhood I ever remember someone taking me to an actual store to buy clothes. I remember canning in the kitchen with everyone pitching in and helping Grandma, and a different sense family. It was confusing to me as a child and I always felt a bit uncomfortable. Now I can look back and realize that it was uncomfortable because my actual home life was something I knew I should hide from them. I remember going to my Uncle and Aunts house to visit and hang out with my cousins and thinking ‘why isn’t my life like this at home?’ I admired them and they are the kind of parents I knew I someday wanted to be. I knew that was the life I wanted. Then I would have to go back home. We didn’t take vacations or go camping or any of those things I did with my ‘other’ family. We went to bars, and picnics in the summer that the bars had in forest preserves. At those events there were tons of other kids who had a life like mine. Tons of alcohol, lots of food, smoking marijuana as if it were just a cigarette, lots of men with facial hair, leather jackets, tattoos, and motorcycles. I always thought the moms were beautiful and the one thing that stands out in my mind was the eyeliner they all wore. There was always lots of things for us kids to do there and all the adults were always encouraging us to go eat, go fish, walk in the woods, go get a ride on a motorcycle, play the jukebox, go dance, just go have fun, be a kid. The only problem was I was  quite unsure of what a kid was supposed to do.
Eventually husband #3 became an ex and that’s when all sense of stability and security left my life. I cant even count how many times I moved to a new house and a new neighborhood as a kid. Now as I started to get older we were left home. I remember spending the night with my best friend and watching her parents get ready to go to all these events we used to be allowed to go to and as soon as they left we would then get into her moms makeup, smoke cigarettes we stole as they got ready, we even got out the tattoo stuff a few times and gave each other tattoos.
All the while I still had visits with my other family and lots of time spent with bio mom’s mom. This is when I hid my home life. I wanted to be like them but it wasn’t a reality for me. Bio mom’s mom (my grandmother) took me on a vacation to Texas once and once again I was exposed to these family members who had regular lives and I had to hide mine. Looking back I think how could none of them know what my life was like?  I’m sure they did but it wasn’t anything they could change so they all did there best to just give me good happy times during my visits.
Then came a live in boyfriend and after a summer of way to many people shoved into a tiny 2 bedroom apartment we moved to Chicago. Although bio mom never married this live in I gained what I considered an older brother. I completely related to him and he was allowed to do all those things I had watched adults do all my life. Since I was raised to view these things as ‘normal’ it was my turn to try them. I was 11 the first time I smoked pot and drank alcohol. Now this wasn’t just a kid trying it out I had so much access to it I could do it anytime I wanted. I was in grammar school the first time bio mom used drugs with me. I think I was in the 6th grade and smoking bongs with my bio mom. She worked in bars and hung out in bars and I was allowed to pretty freely use drugs and alcohol whenever but I was expected to go to school and stay home and babysit for my siblings. That only meant that I had parties at my own home as in Chicago there were kids everywhere that had the same life I did. Sure there were some that didn’t but they sure weren’t allowed or interested in hanging out with kids like me.
The live in boyfriend then ended as it seems every relationship bio mom had was a complete failure and life got real tough then. Visits with my other family dwindled as my responsibilities and the pressure of hiding my home life got tougher and tougher. Now I had siblings to babysit, meals to cook them, cleaning to do, homework. We actually dried our jeans in the oven as we became very resourceful. All that with using drugs and alcohol as an escape was a lot of pressure for a kid. I then found that during visits with my other family I had no access to drugs and alcohol and at that point I was already an addict although I didn’t recognize it because it was just normal to me.
When I was 13 I hung out with an older crowd as drugs, alcohol, and that lifestyle was so much more accessible if I hung out with them. I experimented with so many more drugs then. Bio mom got more random boyfriends and home life was really not such a great place for me to be so I took off. I took off a lot. Sometimes bio mom would call the police sometimes not. They never did much but bring me back to the place I now thought of as hell and the visits with my other family just made me want the life I was never going to have even more.
My Uncle had married during all of this chaos and I sought refuge at his house as often as I could. He was a good man, a hard worker and his wife (my Aunt) taught me all the things a mother should teach her child even though I was just her niece by marriage. I loved being there they understood me and I found a place that I didn’t have to hide my crazy home life from. Once again in my life I was learning what a family was. One with parents. Parents who put their children first. I knew I didn’t ever want the lifestyle I grew up with for my future children. I wanted nothing more in life than a real genuine family.
I became pregnant on the bio moms watch by a man who was her age. She knew of the relationship but looking back she just gave me to him it took one less responsibility away from her. He was a drug dealer who gave me access to drugs, guns, and the lifestyle I had grown up in. He also went to jail the day my daughter turned two months old. Now I was a teenager with a baby and nothing. My Aunt and Uncle tried their best to help me during this time but life was so much harder than I ever dreamed it could be and I knew nothing more than to be the kind of mother my bio mom was. At this time in my life I lost my relationship with my Aunt and Uncle over a stupid mistake that I wont speak of but life got horrendous then.
Life spun out of control so quickly I was completely alone and had a baby that was dependent on me. Bless her heart that sweet innocent angel ended up with a drug addicted mother who had no idea what she was doing.
So I did what I was knew how to do. After living with many fellow random addicts on and off I finally got an apartment of my own, got on public assistance, and sold drugs. I met a guy and fell in love. He was willing to step in and take on the role of father to my daughter and to this day I think of him as her father. He worked, I sold drugs, and tried my best to be a mom and a housewife but lets face it being an addict it didn’t turn out very well. All the years I was addicted to drugs I didn’t want to be but I didn’t know how not to be. He wasn’t wiling to quit drinking and using drugs with me and I realized I could do bad by myself and I could actually be better at it alone. I left him and turned into my bio mom. I worked in bars and hung out in them as well. I thought nothing of taking my child to parties where other addicts were there along with their own children and we sent them off to play while we drank and used drugs. Eventually all of this failed and I ended up with my bio mom and my sister raising my daughter.
Right now I’m going to just skip a very painful place in my life that would take hours and so much pain I just don’t care to revisit. Close friends and family know that story and again it wasn’t one that ended well.
There were a few times throughout my life when I tried to do what was right in life. I had great jobs but with no support system it was always easiest to go back to what I knew. Also its a bit tough holding down a pretty impressive job that I was able to get and be an addict at the same time. It was so much easier to be the bartender to gangbangers and motorcycle gangs as the pay was good and the drugs were pretty much free.
As I went through this very painful place in my life my best friend stuck by my side. He to was going through a similar situation and we just genuinely connected and understood each others feelings. After a period of time we started to date. I was still an addict and he himself was a casual user. Circumstances in his own life kept him from his own children and we used together for a few years before the whole being serious about putting in the work to get straight happened. It wasn’t an easy thing to do but we worked hard together to get there. There was never one relapse as we were completely dedicated to being straight and to building a family together. There have been so many struggles along the way and together we got through every one of them.
Today I am drug free for almost 7yrs. I have two children who’s father is my best friend. He is as dedicated to being the best father he can be as I am to being the best mother I can be. He is a hard worker, a good provider and I finally have that family that I myself never had but always wanted. Our children are happy, caring, loving little people who do not know what it feels like to have an unstable home or an absent parent.
About now you are probably wondering why I wrote this post (along with a lot of other things) The reason for this post is that I see on a daily basis women who choose the lifestyle I was raised in. I see women who keep good fathers away from their children while they themselves bring in the live ins or the other husbands and place them in the father role. I want you to know from someone who was denied her father exactly what this does to your child. Even though your child may never tell you how they feel I will. They feel horrible they are torn apart on the inside and you are causing so much mental damage if they are lucky enough to turn their adult lives around it takes years of therapy to get over these feelings. If your child asks for their parent whom is willing to be in their life and you dismiss it you will someday be sorry. You are teaching your child a lifestyle that is extremely hard to change around. Fathers if you are not in your child’s life get your act together and get in it. Although things didn’t work out between the two of you each of you owe it to your children to accept the life of their other parent as long as its a good healthy lifestyle. Moms if your ex has a new partner that is good to your children embrace it and allow your children the love of that woman. Fathers if your ex has a new partner thank that man for doing your job when you are not there as the time spent with each parent is equally important. Get over yourselves and do what is best for these kids. Allow your children all the access you can give them to their family. If your child has Aunts, Uncles, Cousins from dads side or moms side they are all important in the lives of these children. You are creating future broken homes, addicts, abusers etc all because you are being a selfish idiot. Its not about you its about these kids. You might not think this is causing any damage and a pop up visit at the convenience of either of you is ok well let me tell you its not. I am still in therapy and have had so many wasted years and family members that I loved and looked up to become strangers to my life that its pathetic to me.
I have recently been able to reconnect with a lot of my family members and although we are now strangers to each other I am determined to get to know them all again. Not a day passes by now that I don’t think how proud my Aunt would be of the me today. Every time I successfully can something I stop for a second and know that my Grandmother would be so happy to see what I have done. I wish that just for one second that my children could climb up on the lap of both of my Grandfathers and feel the love I did as a child. I missed growing up with cousins but I will now make extra effort to get to know them. No one can give me or my dad back the time we missed with each other as sadly he has passed away while I was busy being a drug addicted lost soul. He will never have the chance to know that his first born child has grown into a strong wonderful woman. The saddest part of the entire thing is I actually feel nothing at all for my bio mom. She was never much of a mother to me as she was to busy holding grudges and trying to rebuild her own life mess at the sacrifice of her children. I can forgive it but I will never forget it. I want better for my own children and all you mothers and fathers out there who have broken homes need to get it together now because to late comes to soon.