It’s been a minute

 Well, hello all! It has been a minute or two since I last hopped in and wrote something. Blogspot became blogger, and my associated email address was not originally a google one, so it took a bit… I still write, and wrote my thoughts down, just not in an electronic format. I am pretty open and transparent with most things, so I also avoided posting things online for a bit. I went back to work some time ago and had to double check that things were kosher before I contributed to a blog again. 

So, today, my beautiful, wonderful Cam is 12. He is now taller than me, skinny like a string bean, speaks non stop about his preferred interests, and has hit middle school. I read the blogs I posted previously and honestly, we were all in such a dark and lonely space. If I could go back and tell my younger self anything, I would provide assurances, that yes, life will get better. Getting out of the house and working again was probably one of the most significant positives in the past few years.  Somehow, our family unit has come out  of that dark place stronger, more united and more stable than ever before. 

Cam began ABA therapy during his kindergarten year, and although there is a lot of controversy surrounding the therapy in a lot of groups, it has been a lifesaver for us. I did my research, vetted a company that aligned with what we felt ABA could do, and went from there. It took genius level planning and strategy to even get our son that therapy, and hands down, has been amazing for our family. It was like weaving an intricate series of things together to make it attainable for us. I mean, cash rate was going to run us about 1500 a WEEK, and that wasn’t gonna realistically happen. 

Most insurance providers won’t cover ABA, although, I seriously think it boils down to some bigwigs looking at bottom line health costs vs. what is morally right. No one collective group.at the time had raised a big enough stink about it.  I mean, if we were dealing with pediatric Cancer, it would have been expensive but somewhat covered. It would have been political suicide otherwise. 

Fortunately, I did my research and found some actual laws in my state that mandate things for autism insurance coverage. I then found out that coverage for something was in my reach, as long as I got a job working for a state entity. I hunted down grant money, we spoke at public events. We met with Senators and Congressmen, sometimes by appointment, other times by pure dumb luck. ( One Senator had no clue what was in store for him when he hopped in his Lyft and guess who his driver was? THAT was serious luck, right there.) Guess what has happened in my state? Medicaid began covering things like ABA just recently, and although it doesn’t help me individually, I would like to think that my voice along with countless others contributed to finally seeing a change in the tides in regards to HOW someone with Autism is worth the investment. Us parents and caregivers  can see it, but explaining it in terms of “just the right thing to do” doesn’t seem to cut it these days. So, find something that they can get behind that also makes them look good… those with Autism are worth the investment because if given proper tools, they can contribute to society in the following ways…..”  Google it, you will notice a slew of articles about companies seeking out higher functioning adults like Apple, Google, Microsoft. I figure whatever way works to get things covered….at the end of the day, everyone is better for it. 

I am glad these changes are happening, and that perceptions are shifting. Now that Cam is older and more self sufficient, I get to enjoy being “Mom”, instead of feeling like a fireman dousing the flames to a wildfire. Things are going to be different, but we have adapted fine. Focusing on goals, one day, sometimes one hour at a time helps, and we even talk to Cam about those goals and seek his input. We are looking at ways to allow him to self advocate. Who better to learn from than someone that is faced with the day to day challenges head on? 

Things that he wants are so varied. He is still very child like in his interests, but, hello? He’s 12. He likes riding bicycles and tells me about popping Ollies on his skateboard. He wants friends desperately. We do what we can, but it seems most of his friends are really Casey’s friends. Casey is still his very best friend. He is in a special Ed classroom with a few hours a day out with general Ed kids, but it isn’t the middle school experience of a typical kiddo. I am ok with it for the most part. Middle school is rough for everyone, and I don’t know a single soul that will say otherwise! 

Planning to do things has become immensely easier, and along the way, we have found people that are true friends of the family. There for a while, we were like a dumpster fire. People steered clear. We surround ourselves with a network of people, some from the special needs community, but most from outside that world. It is emotionally and physically taxing to always be in “battle mode” and it is nice to talk about things that interest us beyond parenthood. 

One last thing… the pandemic. For us, it wasn’t as bad as for other people. It was almost like a “welcome to our world” moment for some of our old work associates and neighbors. After a few months, a lot of people finally understood what we were saying about the need to connect with others. We were used to being a bit isolated, so it was all status quo. We masked up, washed religiously, and went out ONLY when we had to. My work was strictly from home, but there were times when food/grocery-delivery didn’t work, or prescriptions needed to be picked up. It wasn’t often, and if you were to ask any of our friends if they would have suspected us to be living the non masked life, they would have laughed in your face. Then, my husband got ill. We don’t know if it was when he went to pick up his prescriptions, or to put gas in the car one day, but he caught Covid right when our city was spiking and running out of hospital beds. He, of course, showed symptoms first, then the rest of us came down with it. Friends, co workers, neighbors, acquaintances all contributed in a way we had never seen. I didn’t have to cook for nearly the entire quarantine, which was good, because my husband was hospitalized for a week, clinging on to life. I’m not joking, either. It looked really rough for the first 4 days. He still has lung damage to this day. My kids, they were fine after a day or two with only mild fevers. I was so tired, I could hardly stay awake more than a few hours a day. I monitored myself with a pulsoxymeter and FaceTimed frequently just so another adult could monitor me and make sure that I wasn’t going to end up passed out and unable to take care of the two children at home with me. I had some slight flashbacks to the times of my stay at home mom life and thanked the heavens above that they could make Mac n cheese, pb&j sandwiches, pop popcorn, heat and eat food deliveries and wash a dish or ten.  

So, that’s an update on us. I’m sure more will follow at some point, but figured I gave you enough to chew on for a bit. 

Until then… 

Autism can have an impact on siblings, too.

For our younger typically developing son, two worlds are about to collide soon.

Autism in the headlines

Autism is a mysterious thing. There is so much to learn for society, parents, and those living with Autism. I am just a mom raising two boys. One child is typically developing and one is anything but typical. The developmental gap between the two widens every day. With one child, I know there will be challenges like the first time he goes on a date, decides his mom and dad aren't "cool" anymore, and the birds and bees talk. With the other child, we are blazing a trail. Will I ever face those same challenges? At this point, it is a resounding "I don't know".

I don't know how you do it.

"I don't know how you do it". Just one of the questions we frequently get when we talk about raising our oldest son, Cameron. He was diagnosed a few weeks after he turned 2 with an Autism spectrum disorder. It wasn't easy to even get to the diagnosis, as we were both in huge amounts of denial, yet our son needed help. My husband and I researched and learned a lot of things in a short amount of time following diagnosis. He performed WELL below the "normal" range in a lot of important categories. He even performed in the less than 1 percentile in some areas. As lifetime overachieving parents,

Legacies a grandmother leaves

I have been fortunate. I have my mother still alive and well and across town. This isn't the case for everyone. Mother's Day means a lot to people. While I love my mother dearly, and recognize some of the sacrifice any mother goes through, I wonder how she is handling things. You see, HER mother has since passed on. It has been 7 years. I cannot imagine how difficult it has been for her, my aunts, and my great aunts in dealing with this loss in their lives. All I can do is show how her legacy and teachings Continues to live within me. Hopefully, my mom, aunts and great aunts will feel enlightened and uplifted in some way.

Who is my son?

April is here again, and it is autism awareness month. I just placed the t shirt order for our local walk. we use it as a fundraiser for an Autism center that helps kids like mine. I thought now would be a good time to write some things down. This is raw, and honest, and probably not politically correct, but what I say is directly from the heart. This is MY personal journey, and unless you can fully say you walk in my shoes, you have no right to judge. I do want to share this, so that if there is some mom out there in a similar situation, then she knows she is NOT alone.

Surviving Summer

Last summer, as you may recall was a very trying and difficult time. I thought. I was at the end of my rope. My sanity was hanging on by a thread. I was in panic mode this year, starting in mid march when I knew we only had a little while left before school was once again out. I thought, well surely I have enough to show them that my son needs ESY.

Lost

The biggest scare of my life came this week. I am not being over dramatic with that statement. We had a brief meeting at Cameron's school for this upcoming year. It was not a big deal at all. We did that little meeting, then the kids and I loaded into the car, and rather than drive back home, I decided to take the kids to a different elementary school to let them play on the playground equipment and burn off some energy. The playground has swings, something my son's school does not, plus a fenced in play area.

Change is the one thing you can count on

There is some exciting news on the church-front. My family has been attending one of the biggest churches in my city. We started going when services were held in a skating rink. Childcare was at a daycare center next to the skating rink. I think the church started in 2007, we started going in 2009. So, in that time, the church has moved out of the rink, built its own church with a HUGE auditorium, it's own childcare rooms, and more than one location in more than just my city. It now broadcasts to other cities, has many service times and days, broadcasts recorded sermons on local tv, offers sermons for view online both live during service times and in their recorded sermons section. Trust me, the excuse "I can't attend church because I have ---- at that time" can't work with this church. You can watch the sermons in your underwear at 3 am.The church is doing something right because they are enabling people to spread the word. The motto in which this church goes by is " NO Perfect People Allowed" , and they mean it. They reach out to the unchurched. They reach out to those that have never gone, or those that have been burned by church in the past.
While all this growth was going on within the church, my family was growing and learning all about autism. I wouldn't necessarily say church was any huge part of my life as I grew up, but I knew that God was there. He was there when I faced some very adult style issues as a very young child. He was there when I nearly died on the side of the road as a teen. He was there when I faced my demons and pulled me away from my own self destruction in my very early 20's. He was my constant, and who I could rely on all of the time. He protected me from myself. Much like a parent protects their toddler, just on a MUCH bigger scale.
When Cameron came into the picture, I prayed to God to protect him, just as he had done with me. When Cameron was diagnosed, I struggled so very hard and had  a "God, WHY?" Attitude. It was shortly after diagnosis I realized how God planned on using me. Church can be hard for the unchurched. Let's say they get past their own mental barriers, only to be faced with barriers of a more physical nature. It is my duty to spread the word of Jesus to those of my "tribe". I experienced some of these physical barriers when I attended and well meaning nursery workers couldn't care for my son and had no resources to do so. I felt a bit saddened and if I wasn't so sure about that I had been called to do, I honestly think I would have stopped going to church and growing with God. For a while now, I have volunteered in the nursery and brought our children only when we felt like Cameron could handle it. That hasn't been too often as of late, and my husband will usually watch services on TV.  No, church isn't mandatory to grow with Him, but it is a big part of connecting with those with similar visions. It is a way to get involved in others lives in helping them serve, spread the message, and provide that human connection.
My mission was to make church and learning about His word accessible to everyone, because, again "NO Perfect People Allowed".
Let me say this, I voiced my concerns, met with nursery staff, answered a few questions, gave them a few names of others who had paved the way before me, and although my heart and head wanted to make this happen and I wanted to take charge of the whole thing, that IS NOT what happened. The Childcare director and other church staff put all of the rest together and ran with it. signs are going up soon, and although it isn't open yet, itWILL be very soon! I prayed constantly about this issue, but with everything else on my plate that I deal with just to survive my family's daily life, I knew I had given all I could give. Thank you, from the bottom of my heart to all those that made this happen. GREAT things will come of this. For three years, I have prayed for this.

Getting my groove back

Hello, Y'all!
It has been a while. I almost forgot about blogging altogether in the madness that has transpired. Raising two little boys is..... What is the word..... Oh, yeah, insane. The boys are so grown up. The last time I wrote, we were fresh out of diapers, potty training was still going underway, and although it still is in a lot of ways, it is more tweaks than constant "training". I am about to get on here and write about a zillion blogs, just pace yourself!

Loving unconditionally despite everything

In early December, I made a video about my son and his iPad. I wanted to convey my many thank yous to the family who selflessly gave my son a vital tool that my family simply couldn't fund by itself. I have always gravitated towards music, and I wanted to find the perfect song.  What I found were about 1/2 a dozen songs that really would have worked well. There was one song, in particular that I really wanted to use, but just didn't think the general viewing audience would have really understood why the song would have been fitting.

Time out for yourself

January is always full of all sorts of resolutions. I have a huge one of my own. This time, this blog entry is about me. It isn't about my kids, or husband, or school systems, insurance companies, or anything else. 

I have put myself on the back burner for too long. It is time I take care of myself.

One of the most common questions

In one of the support groups I am in, a question was brought up from a fellow autism mom. I had not really realized it, but I think this is one of the most common questions that people have asked me. Since many of my readers may not feel comfortable asking, but would be curious to know, I thought I would basically post it here. "How did you feel when your son got the diagnosis?"

T minus 21 days....

School is about to be back in session! I cannot express how happy this makes me without someone wanting to punch me in the face for making the blog a little too long. Cameron had a bit of a rough start to summer, and so did I. I had serious anxiety over everything. FYI, WebMD and Google are NOT your friends all of the time. Sometimes they make you stay up at night feeling like live bait in a shark cage off the coast of South Africa during the filming of shark week. Or, at least, that is the best way I could describe the beginning of summer..... I saw a doc, got on some meds and feel less agitated.
I wasn't picking up on a lot of Cameron's subtle clues, and that was causing some serious meltdowns, and the fecal smearing. With a few tweaks to the schedule, and a more watchful eye for certain clues, life has been manageable. It helped to have some structure in his routine, and to not stay at home too much. He is too active to stay cooped up inside all day. He craves different environments. I can't really blame him. I am the same way. From the last week of June up until last week, we did a Kids day out program that seemed to help greatly. Both boys loved going, and I enjoyed working with some great kids, and great ladies. It was good for me to get out of the house too.
The biggest change I have seen this summer was when he began requesting for things in sentences. This happened for the first time with a teacher at Kids day out, and again, a few times at home since. He also shocked me a few weeks back. He has sung the abc song for a while now, but mumbles through a lot of the letters, so I assumed he was just singing a song and not correlating the letters in the song to the actual letters of the alphabet. He has a toy train with alphabet letters on blocks that you can stick in the train and it tells you the letter and sound. One night, we were sitting in the living room and he began approaching me with letters from his train in his bedroom. He would show me the letter, then TELL me the letter. He did fantastic! He would run back this room and grab a random letter and repeat. The toughest letter for him to say is X. We are working on it, and it is getting better. At first it sounded like "it", but now he is sounding it out, so it sounds like "eeeeehhhhhhkkkkkk SSS" with an almost silent s sound at the end. He will get it though!
This gives me so much hope. He can now master these letters, and i look forward to him spelling his full name, and typing or writing simple words. It may be a while off, but you have to understand something..... We had hope, but we also read and saw dozens and dozens of stories of children on the autism spectrum who reminded us so much of our son who couldn't accomplish this much, either EVER, or not until adolescence.
So, with a summer like this, I can only imagine the possibilities this school year.

The morning routine

I Wake up to screams. He wants his special milk. While he sips, dress him for special education preschool. He still wears a diaper, and I struggle to change him as he lays there like a limp rag doll drinking from a sippy cup designed for a baby. I pay special attention to his clothing, avoiding things like shirt tags and sock hems. I get a special greeting, as he flaps his arms and nods his head, then sinks into my chest for cuddle time. Next comes hair and teeth, as I pay special attention to his aversions to these tasks. Spend some time feeding and dressing little brother, but not as much, since he is more independent. Trade spots with my husband so that I can dress. The day is planned with special care and consideration. Off to school and therapies, then back home to do chores and spend some special time with little brother. Time for school pick up at his special designated time and location. Snack time with special foods approved with his special quirks in mind. Encourage playtime with brothers so they can develop a special bond. Work on special tasks to help develop everyday life skills.  A special dinner, spoon fed to to him, a calming bath after a 2 hour meltdown, and finally, bed. It is midnight, and I can only think of how special the day ended up being. He is almost 4 years old, and he said his first word today. As routine as this day was, it was also special. I cannot help but feel weary, drained, elated and hopeful. Tomorrow will be special too.  

I  wrote this several months back, and I thought I would share it with you. I can remember thinking as a young teenage girl... " I will NEVER lead a boring and mundane existence!" And you know what? I my life isn't anywhere near boring or mundane. :)

Don't mind me, I am just going Crazy.

I am losing my mind, literally.

Autism Dads

Father's Day is tomorrow. I wanted to point out a few things that separate Autism dads from the pack, and in my eyes, makes these men the Worlds Greatest. How did I get so lucky to marry such a great guy?
Here's just some of the things that my husband does:

You get down in the floor and play with your kid the only way you know how to.
It is okay if he doesn't look you in the eye.
Instead of t-ball on the weekends, it's walking side by side during hippotherapy.
So what if he is scooting around in your 200 dollar new dress shoes? He's imitating!
You jump for joy when he talks to you or greets you at the door.
"UP" means a workout where your child is the deadweight, and you do this till you can't anymore.
You buy and set up the biggest trampoline that can fit in the yard so you can jump with him too.
You don't hide his diagnosis
You walk with him and FOR him.
Bathroom time is now community time, and you don't care if he stares you down while you go.
Sometimes he feeds you food, although sometimes I wonder where he found that cracker at...
You reach out to help other families like ours by spreading knowledge we have learned along the way
The stares in public don't seem to embarrass you any longer.
It amazes you every time our son uses a spoon to eat, and he is 4.
You work long, late hours to allow me to stay at home to work on therapy.
Weekend Activities are planned around our sons and their interests/ability
You have spent hundreds of hours reading online and in books about autism.
You are man enough to admit your biggest fears
You are a rock when I need you the most
You are involved in every aspect of your sons life.
 He is not an embarrassment, mistake, or punishment. He is a gift, and you treat him so.

It's been a while

Blogging has helped me immensely. I haven't been on to write a new blog in nearly 6 months, but I need to be better at committing time to this. Blogging helps me vent, and let go of things. It is great for my own mental health as well.

On that note, I have been in a huge funk lately. Everything has been building up, and I have talked with the hubby that maybe it is time to seek a professional's guidance. I have been chronically and seriously depressed. I am at the point now where even if I won a mega millions jackpot, I might smile for a few, but then complain about all of the problems the money could bring. Rather than gripe about my problems in here, I am going to spend the rest of this blog speaking of the amazing accomplishments and things that have happened lately.... And save the misery for the doctor.
So in 6 months time, Cameron has explored and eaten a few more foods, he has said a TON more... Some of what he repeats is a little embarrassing, but what toddler/preschooler hasn't said something a bit embarrassing?

Casey has had a verbal explosion, and his favorite words lately are "NO", " PLEASE", and "THANK YOU". Guess who is copying? Yup. A big win in my book. echolalia or not, he is understanding that he can speak and express his feelings. He will say " Casey stop it" anytime he is mad or doesnt want something. I guess he has heard me say that phrase a lot... afterall, Casey is a typical 2 year old getting into EVERYTHING in sight. I just thought i had my house babyproofed u til he came along!

Another great moment.... Potty training. Both boys are soooo close. Cameron worked all year on potty training at school. The last few weeks of school, he was going with almost no accidents during the school day. He would come home, and I wasn't rigid enough with the potty schedule, so he didn't do so well here BUT now, if I tell him "go potty", he goes to his bathroom, lifts the seat, takes his pants off, and scoots onto the seat and pees about 80 percent of the time. Casey sees Cameron getting serious praise for the potty skills, and has said " pee pee potty", so I stick the toilet ring on, and take off his pants and diaper, plop him on, and about 50 percent of the time, he actually pees. I am hoping to have one, if not both boys daytime trained by the start of school.
This summer, I will be Cameron's teacher for a parents day out program. I feel like he will get more out of inclusion in a regular program with guidance from someone who really knows how to handle him. Since most of the teachers that run the summer program are younger and college aged, the director and I felt it would be best for me to be in his room, rather than teach somewhere else and run the risk of Cameron melting down and flipping out on his teachers. At least of it is me, I know how to handle it.
Cameron had an outstanding teacher, aides and therapists in this past year. He grew so much, that they named him most improved student in his classroom.  He also grew so much in this past year. I let his hair grow out, and boy o boy, the curls!!
I also attended the autism conference for the region. I saw a few other parents out there, but it was mainly administrators, general Ed teachers, special education teachers, and therapists. I heard Temple  Grandin's mother speak, ( here is a wiki link incase you have no clue who she  http://en.wikipedia.org/wiki/Temple_Grandin ) I learned a few techniques that I could try with Cameron in a few other seminars.
I thought I would leave you with a picture. Look how much he has physically changed. Next blog,  might include some video so you can see for yourself how far he has come developmentally. It has been a moving and powerful year.

Holidays are over... Sorta

For most people, the holidays came to an end yesterday. The new year is here, and life is getting back into the swing of things. For our household, "normal" will not return for a few more days.

Good people still exist

In this world, we see things that can harden so many people's hearts. We also see so much that shows us that those who give without regret do exist. For instance the hot topic of the week was about a New York policeman going into a shoe store and purchasing a pair of boots for a homeless barefooted man. The officer proceeded to place these boots on this man's feet.