In The Matter Of Days…

3/18

The amount of tears, silent tears, that I’ve cried at my desk over my child are too numerous to count.

I just made the hardest call I’ve had to make so far as J’s mom. A call to his doctor to discuss a behavior medication solution. A call to ask for help handling my child. My child that has finally gotten too big for me to handle alone without the assistance of another adult when his aggression behaviors overwhelm me. It was a call that had to finally be made after weeks and weeks of scratches and bruises and scars from a child that I love so damn much that it hurts but that I am unable to help.

I can’t continue to be his punching bag. I can’t continue to have him come after me when he doesn’t get what he wants because he can’t or doesn’t know how to manage his emotions. I can’t be afraid of my son.

3/19

J went back to school today. I’m glad that Spring Break is over, but I would really love to be over his behavior challenges…I literally had to stop writing this due to another behavior incident.

It’s really starting to get to me. I think my body is reacting very negatively to all this stress. When I’m with J, these behavior incidents almost take everything I have to get through them. I’m always on the ready, on the defense, waiting for what I say and/or what he doesn’t get to throw him into being a combative kid.

This evening escalated quickly with negative behaviors. He just wasn’t happy about anything we did or didn’t do and he was tired. This resulted in lots of hitting which led to an early bedtime. It was almost 20 minutes of hell, that left me exhausted and Lance ready to roar.

We got through it though, even with tears but also with a few smiles and laughs at the end.

Plus we received some information back from J’s doctor about trying a medication to help calm him to assist with his behavior issues. They just need to make sure it won’t interfere with his seizure medication. Hoping we can get this figured out soon as we are truly in need of a reprieve.

3/20

This morning was pure hell! Woke J up and he was instantly angry with me. He was angry for being woken up, for being unable to understand his own emotions maybe.

I finally got him into the bathroom but because I was expecting us to follow our normal routine and he wasn’t, the aggressive behavior started right up. It resulted in me bawling through his hits, scratches and yelling at me. To some degree I think it shocked him to see me like this, in turmoil and pain, because he kind-of did back off. Or maybe it was just the fact that I finally finished getting him ready so he was able to leave the bathroom.

I was thankful the rest of the morning went okay. But I did have another session of tears after J left for school. It was definitely needed; to collect myself, to let it all out, to be able to move on.

Coming home was kind-of an anxious trip, wondering how this evening would go compared to the previous night. I was shocked with how it all turned out. We had smiles and giggles again, a few attempts to hit but those were quickly de-escalated. It felt so good to have an easier night. I wish I could figure out what is or what has been troubling him so we could have more nights like this again.

We are starting his new behavior meds tomorrow. They are supposed to help calm him, keep him more relaxed and less anxious. I also got a new consulting appointment for a behavioral therapist, even though it’s not until mid-April it’s in the right direction. And I reached out to his school resource teacher for additional assistance, as any help is appreciated. I also made a wellness appointment with my doctor, gotta take care of me too.

3/21

A much better day with J. I had one small sock fiasco this morning but I was finally granted permission to change his socks.

Started his new meds.

He took a morning nap at school but being up since 4:30am might have caused that.

He was also very quiet, calm and so tired this evening to the point that his eyelids where drooping. He even sat with me, snuggled too, which hasn’t happened in weeks. There was no aggression of any kind.

He was quite a different kid tonight.

We’re watching him closely, making sure his new meds aren’t the result of all these changes but possibly due to his self imposed early wake up call. We don’t want him to turn into a zombie. I’m anxious to see how the coming days go. We would love a calm and collective J but who remains himself.

3/22

Another better day with J. A typical morning routine, one that included working to get him out of bed but didn’t include any aggression. He had another good day at school, with no nap, even though he was up at 4:30 again. We did unfortunately find out that he’s had some aggression issues at school this week, but they are only seeing it when he gets tired or upset at something. I am again thankful for his school support staff and their understanding.

We had another good evening at home with no aggressive behaviors but he sure was tired again. However, that worked out for my benefit as he curled up with me and fell asleep. I don’t care how tall my child gets, I will always be willing to curl up and snuggle with J. Even though he can barely fit in my arms and lap for the time being, any chance I get to do that is a plus.

Again, I’m not sure if the new meds or the early wake up is the reason for his tiredness but I’m going to assume it’s a little of both. It will take some time for his system to get used to the new meds. But I am happy with the change in behaviors thus far.

3/23

Another good day with J. We took him out to lunch and for a shopping trip with only one minor hiccup. Came home for a movie and then J took a nap.

On the way to my folks is when the issues started. Pretty sure he thought we were going to leave him once we got there like we did two weeks ago for our date night. He started acting out in the car and once we arrived wouldn’t get out which lead to him hitting again. It didn’t help that he had an accident on the way over so he was already anticipating that clean up and change of clothes.

After about 30 minutes of finally getting him out of the car, into the house and changed, we both were ready for a beer.

There was one more minor challenge after that with his iPad but that was over quickly.

The rest of the evening was good. I’m happy that though he still went to hide in Papa & Ma’s bedroom (his chosen space), he came out from time to time to check on us and see what we were doing.

It’s all about one day at a time.

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Today

01/23/19

#1. I’ve changed my child 3 times due to pooping incidents. He’s not yet toilet trained and also unable to keep his hands out of his pants when he goes number 2. Today there is an ever present back ground scent of shit. Thank gosh for Clorox sprays and candles.

#2. My child doesn’t want me around him at all. I’m lucky to get a kiss before a firm verbal ‘bye’ is given. There’s no reading together or playing, but because of #1 I have to be just within eye sight cause even if I leave him for a second too long there’s the high probability I’ll have a fourth incident. I told him to stop pooping today, he reminds me of when Chris Traeger on Parks & Recreation looks in the mirror to tell himself the same thing when he has the flu.

#3. Physical aggression is so tiring which is probably why I’m not too broken up about #2 today. If I do end up out staying my welcome and then asking for something that receives a “no” answer, it is the most terrible, awful, horrible, disgusting word to be uttered. If I’m not quick enough to have a distraction ready (which today I’m not because of not being allowed around him and his things), then the aggression pours from him like a water main break; strong, forceful and everywhere on my person. It includes bites, scratches and slaps, usually to the face.

The unfunny thing is that once Lance gets home, J will completely do a 180 from his experience vs. my experience. There will be giggles and laughter, reading and playing. The kid just loves his dad, I do too. Maybe our next snow day will be better.

Behaviors, Expectations & Pineapple???

It’s the most wonderful time of the year…Maybe not so much when you’re an autism parent and even more so when you’re an individual on the spectrum.

I’ve noticed the hardships with J a little earlier than normal this year. It started prior to Halloween; aggressive behavior, standoffishness (my new word), needing his iPad like a crutch for self regulation & in social situations, and aloofness. It’s not to say we haven’t had any good or joyous moments, but the others have become more prevalent lately.

Though it’s hard, the best thing we can do is give him his space when able, let him work through his behaviors & emotions without hovering, monitor/control his iPad usage, and just let him be (which includes J voluntarily going to his room for quiet time to look at his books and stem – flap, bounce, and visualize as needed).

Our not so little boy is growing up and some of this behaviors are to be expected as he comes into his own. However, it’s hard when he can’t verbalize any of these emotions to us; to me as I’m the one he seems to be most upset with all the time. I do take it as best as I can and most of the time I’m able to cover the hole in my heart from his behavior directed primarily at me. Yet there can be difficult times and days where I find it hard to smile through the pain and have to focus only on intentional discipline (because a time out when Lance isn’t around is a no go as there’s no way I can get J to his room alone) with a side of distraction and a heavy dose of positive reinforcement.

I’m nervous how things may go in the weeks to come. Will these behaviors stay steady or get worse? Will his attitude jump off a cliff or will regression happen as all the activities, emotions and changes that come with the holiday seasons get into full swing?

Our consistent reminder is to keep J’s schedule (that we can control) as normal as possible which includes meals, iPad time and sleep. We’ve noticed over the past year how much this helps. We also have to remember, though this may be hard on family & friends and hard for Lance & I, that we can’t always participate like everyone else. Mainly, we can’t stay as long as you would like us to (or as long we we want to) because we need to do what is right & best for J and our little family, which is realizing when it’s time to leave. I can understand how expectations are neglected by these actions, trust me I get it, but it’s all for the best for our family’s well-being.

Being a parent of an autistic child, my own expectations have had to be thrown out many times. Though I still have small ones, they are not so big in scope anymore as J’s behaviors and attitude very much depend on how things will go. I know some will say “that’s how it is for all parents”, but it’s just not when you have an autistic child. It’s very much like comparing kiwi to pineapples. Kiwi is soft, fuzzy and sweet whereas pineapple is hard (to get past the surface), pokey (have to be careful when handling), and can have a bite to it before turning sweet. I’ve just realized through this analogy that J is very much like a pineapple.

So as the weeks progress and the holidays (with all their expectations) come nearer, I will take it one day at a time. I will remember that a bad moment doesn’t make it a bad day and a bad day doesn’t make it a bad life. I’ll remember it’s okay to give J his own space and have my own as well. I’ll remember to store those precious moments of laughter, giggles, smiles, cuddles, hand holding and hugs away for those times that can become too much and that those good times are just being hidden away but will come again.

Now wish me luck as I go try to hug my pineapple.

Back to School Sorrows – Part 2

I was so good about not getting emotional before J left for school, didn’t want to upset him prior to leaving, but once he was on his way the tears came.

I’m always so nervous for my boy. Will his new bus aides treat him okay and try to understand his quirks? That includes his new paras at school, will they work well with him and vice versa? Will he continue to excel and progress with his IEP (individual education program)? Will his classmates and peers be kind to him and nice, will someone try to be his friend?

I can’t begin to tell you how many times I’ve asked the universe to let him be able to tell me how his days are. The ups and downs, what brings him joy and sadness. I so wish I could know what his days are like besides a third party telling me this and that.

Things will be alright though. Everyday I learn more, learn how to understand and relate to my son, learn through research and articles on how to be a better and stronger advocate for my son, learn how to seek support and guidance from others to keep progressing with my son. I can only hope that with all this knowledge and continued learning that J will never go without (no matter how many times I think I’ve failed him), that my intentions are always for the best, for his best.

This doesn’t mean there won’t be challenges, hardships or sorrow. Challenges with transitions and new or different schedules. Hardships with maintaining appropriate behaviors. Sorrows that we don’t get to experience the typical events that go along with raising a child; like in our most recent event, the joys of back to school shopping. What a chore the turned out to be. J had a meltdown while shopping because he wanted to go to the garden center instead of doing the shopping first. He didn’t want to wait or want to understand the first/then schedule. A trip that could have been fun and enjoyable turned into Lance walking, half carrying J to the car while I finished the shopping. The excitement for back to school shopping, open house night or showing off his classroom, where he sits, his teacher or friends isn’t something we have ever experienced.

At the very least I won’t ever go without seeing his excitement of seeing the gym during ESY or getting on the magical yellow school bus in the mornings. 🚌

Back To School Joys – Part 1

J started 2nd grade this week!!!

I was pretty nervous for him to go back to school, given his aggressive behaviors he’s had in the last few weeks and the feeling that he may have regressed over the summer as well, my fault.

This summer I took a different approach with J, especially since it all started a little rough with lots of aggression and turmoil aka I was J’s punching bag. So I backed off, I relaxed and hung out with J instead of having an educational and therapy driven agenda with him. I engaged when he wanted to, requested to or when I could get away with it. We had a great summer, including a wonderful family road trip. I was a completely different mom this summer, a mom I was happy being and I was happy to let Jax be a regular kid, enjoying his summer vacation.

Then reality hit and I realized there was only 2 weeks till school started back up and I started to freak a little bit. Were his writing skills, cognitive skills, listening skills still up to par with last school year? It wasn’t like we hadn’t worked on anything this summer or not gone to therapy sessions or hadn’t gone on social outings or hadn’t taught positive behavior, but I wondered if my new approach to making this summer more sustainable may have backfired for the overall global needs of J. I mean I have a 7 year old non-verbal, not yet potty trained, sometimes aggressive, but with the cutest freckles and giggles, autistic child going into 2nd grade!!!

But all these worries were for not. J has had a GREAT start back. He participated in ESY (extended school year) sessions which help for him to transition back into school with a couple hours prior to a full day back. Since his first day back, J has met and exceeded our expectations and that of his school support staff too. I couldn’t be prouder or more excited about his school year ahead. As his resource teacher said, ‘this will be our best school year yet’. I certainly hope so, fingers crossed, toes crossed, arms and legs too; all for an extra measure of luck.

I think what had made this school year even greater for J is he gets to ride the actual school bus. He loves it! Had never been so excited to leave for school and it’s all because of a big yellow bus 🚌!

For what it’s worth…

I get that this life is hard, stressful and intense. It can be sad and lonely, heart-breaking and worrisome. It’s a journey of questions and what-ifs. It’s full of paperwork, insurance, therapies, planning and meetings. Along with mistakes, trials & errors, and tears.

There’s hitting, biting, kicking, dropping, scratching, pulling and the exhaustion of a mom and dad. It’s full of ‘use your words’, trying new foods, understanding our non-verbal son, the forever struggle to potty train and working on skills at all times.

There is no rest for the weary.

The majority above comes with being a parent but add being a special needs parent and all of the above has an added boost to it. It would be so easy to always dwell on the hard times, the negative aspects, trying issues and the difficult situations we go though but that shouldn’t be the life we live. It shouldn’t be the life we choose.

I do acknowledge that this journey has smiles, giggles, hugs and snuggles. It has wonder and amazement at each new day. It has the cutest nose, kissable cheeks and long black eye-lashes. It enjoys tents and books and of course iPad time. It of course being J.

So though at times I may focus on the negative or worry more than I should, I have for the most part looked to the positive and good of what I can learn from J and autism. J has taught me patience beyond anything I had before, to be present and to use my own words. I have learned to slow down (but that might be more so because J likes the lights off in the morning and night) and to engage with not only him but those around me.

I connect with my son on a level I didn’t know about before autism. J letting me enter his world is a privilege, and to see the simplicity of life through his eyes is awakening. I love watching him, how I can see his mind flit from one thing to another. I may have laundry to do, dishes to wash or a floor to sweep but if J wants to engage with me, I will drop whatever I’m doing to be with him because you don’t know when another opportunity will present itself.

I love my child and his autism for what he and it has given us, shown us and taught us. Every day I look at my child and can feel my heart melt because of how much I love him. We will have difficult days in the future but I will continue to focus on the positive and what can be instead of what isn’t.

“Looking into my son’s eyes, all I see is a happy boy who does not think (know) he has special needs. And that’s how it should be.” ~ SpeakingAutism.ca

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This Mother’s Greatest Fear

A few weeks ago on our weekly Sippycup Cocktails podcast I lied. We did an episode of 20 questions, love map exercise, and one of the questions was ‘What is one of my greatest fears or disaster scenarios?’ Lance was right in his answer, I do have a tendency to fear all natural disasters, but ultimately I lied. I wasn’t ready, wanting, willing to dive into what my greatest fear is but here’s the truth.

I am scared to tears and panic attacks of what will become of J when we are gone. I am terrified of him being used, taken advantage of, mistreated, abused, unloved, uncared for, isolated when are aren’t here. Who will watch over him, look out from him, care for him, love him as much as Lance and I do? Who will take the time to understand him when he is going through something that he can’t express, when he has a meltdown? He is so precious to us and my heart hurts for his future when Lance and I are no longer here. How will he be able to understand what has happened, will he be able to, or for the rest of his life will he be asking for us?

I understand that he is only 6 and he has so much more growing and developing to do but this is causing me so much stress right now and I wish I understood why. We are even in the process of establishing a Will and Special Needs Trust but I’ve been a bag full of fears these recent months. We special needs parents have so much more on the line for our child than ‘normal’ parents do. Our goals, needs, and wants are for our child is to be able to take care of themselves in the most basic self-care ways and with the hopes of  so much more.

We went to the pumpkin patch yesterday. When in line to pay for our tickets there was an man with special needs and his caregiver in front of us. Though she was pretty good with him, didn’t rush him to get his money out to pay or push him along so the next person could pay, I would have appreciated if it were my son if she would have answered his questions about what they were doing there and what they were going to see. I did wonder why they weren’t with a group though and it was just the two of them. QuoteMy thoughts drifted to J then and that this may be him some day and I’m okay with that, I just want the absolute best for him when we aren’t around, like I do now. It’s the unknown that kills me, the unknown that is unbearable.

I know this isn’t something I should dwell on. Dwelling on it takes away from the here and now that I want and should be enjoying to the fullest extent possible. There is so much to enjoy with J, even among the most trying of days.

So, I’ve decided I can’t die, nor Lance. It just isn’t feasible.