Sick momma guilt

He shouldn’t feel the need to take care of me

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So I spent the night in the hospital.

Turns out its stress combined with a heart issue I already have. I got some overdue tests done on my heart and its still ticking so that’s a good thing. I’ll do a post about the price of those tests at a later date when my heart recovers.

I gotta take it easy. I need to lower my stress. I think the look on my face must have made the doctor feel bad because he gave a little nervous laugh. I told him I have a special needs kiddo and I’m having to fight to get any help for him. He sighed, shaking his head and told me he has four kids none of which are special needs but he can understand the stress. I’m on blood pressure meds for the first time in my life and I’m not even 40.

Im not a healthy person. Its not from lack of trying, maybe I have a little bit too much frozen coffee. (If you have a Human bean franchise YOU NEED TO TRY THEIR GRANITAS) I was diagnosed with Thyroid Cancer in 2014. Surgery removed it, I had radiation to get the rest of it and was given the clean bill of health, cancer free in 2015. Its the good cancer, that’s what I was told. If you ever want to talk to me, never…ever ever say that Thyroid Cancer is the good cancer.

Playing devils advocate, for stages 1-2 its unlikely to come back once you get rid of it. Stage 3-4 have a much higher chance of returning and it can be at any time. 5…10..15 years later. So its unlikely to kill you and suppose that’s why they call it the good cancer. What they don’t tell you is that without your thyroid, you’re life is never going to be the same again. The thyroid gland produces hormones that regulate the body’s metabolic rate as well as heart and digestive function, muscle control, brain development, mood and bone maintenance. So…a heck of a lot. Once you lose your thyroid you go on thyroid replacement hormones that take awhile to get right. Most doctors go off a basis that hasn’t been changed since the 70s and the guidelines were also tested for men. Don’t get me started on any of that.

I ate healthier. I took a cardo kickboxing class. I felt ok and then it just continued to go down hill. Brain fog. Exhaustion. I’m not talking a cup of coffee and getting on your feet, I mean the your legs are going to give out post epidural level of exhaustion. I have to lock my legs sometimes so they won’t give out.  I gained 40lbs. I get sick to my stomach on foods that I used to love. Every day is a battle to get up and do things.

Now add to that I have a kiddo who needs extra help. I’m having to fight to get his write ups from his Psychiatrist, fight the school from taking away things like recess for being a ‘bad kid’. We haven’t had the time to get an IEP together before the end of the school year and i’m pulled in four directions trying to get him situated for the last few months while also trying to keep on my feet.  I guess my body finally said enough.

So I spent the night was poked and prodded and said to be in relatively good health but I need to cut down the stress. How is that even an option to say to someone? Today is also the A- games. Like the X games but for Autism. Children on the spectrum can sign up and practice to compete in various skill categories. Its a huge event with bounce houses, food trucks and lots of information. I kept DJ out of a game today to go to that event and now I’m bed ridden.

DJ misses a lot because of my health. He didn’t get to go to many classes while we were dealing with cancer and now I have to figure out how to get him to school. Last year he missed some soccer because I was feeling rundown again as it comes and goes.  This morning he woke up, came to check on me, stroking my cheek and saying he would take care of me and my heart broke. He shouldn’t have to take care of me, he shouldn’t even think about that and it hurts to know that as much as I do, that someone else could do more. Someone mentioned seeking therapy and I’m considering it.

I’ve never been upset that DJ has Autism. I celebrate his uniqueness, I love the quirky personality and the way he engages with people (not his own age). I love his drive and his interests that most people overlook. I envy his energy. I only worry for the struggles he will have with other kids his age as well the Teachers who will see this as an excuse. For those who don’t know him and how deeply he feels. For those who will discount his intelligence because he cannot articulate what is going on in his head as clearly as what people expect of him.  The diagnosis just gave us a term to apply to somewhat better explain how the world will need to adapt because I don’t want this little guy to change.

One of the bad days

I wish he could tell me whats going on in his head

DJ hasn’t been eating well. He doesn’t have a good diet to begin with, we live on chicken fries, gold fish crackers, cheese sticks or cheese sandwich and turkey soft tacos (cheese and meat only). He’s suppose to try new things, at least a big bite. If its really bad he can spit it out. For a little while he was eating Tilapia even.

He threw up at school a couple weeks ago and we thought it was a stomach bug so we took him home, bed rest, toast and juice to recooperate but he certainly didn’t act sick. No fever. Then it was his cheese sandwhiches. Then it was regular crackers. His breakfast staple the choc chip waffle. We’re back down to the toddler diet of gold fish crackers and sometimes I can still get him to eat a ‘taco’ of just cheese and tortilla.

Yesterday he wanted to just lay in bed and watch TV or play on his tablet. DJ who is constantly bouncing off the walls (ASD with ADHD), bouncing on his bouncing ball while reading or playing games, sensory seeking has been avoiding everything. Today when we went to school he got a blister and wouldn’t go to class. I walked him to the nurse to get a cold pack and a bandaid and he said in the softest whimper over and over “I don’t want to go to class” My heart broke and of course he came home.

We are suppose to start ABA therapy but they keep rescheduling. Its days like these that I really feel it, that I am helpless to figure out whats going on. He wanted to hide in his room again but the tablet needs to be charged, so I convinced him to play on my xbox just to keep him out here with me. He curled up and leaned on me awhile before he needed some space. Our dog lays at his feet, knowing that there is something going on. When asked whats wrong he just said he needed a home day and if its just that, today we can do that. I wish he could tell me whats going on in his head, if there was something that was bugging him at school. If there is something that we’re doing that upsets him but he gets frustrated when he tries to talk about what he’s feeling and then we have a blow up. Its just one of the bad days and we’ll get through it.

He’s harder on himself

I wish I could let the teachers and staff of DJ’s school know that whatever they do, however he reacts that I promise, he’s far harder on himself than they ever could be.

When they threaten to take away recess or field trips. When they say they’re going to take away specials or he won’t be allowed to do the fun stuff if he won’t calm down they don’t see what happens later that night.

When those bad days happen DJ comes home at first he doesn’t want to talk about it. I know it was a bad day, I see the red points on the app that the school uses called Class Dojo. I see the remarks about being unkind or not listening. I know that its going to come out later. I ask and then I wait.

If it doesn’t tumble out as soon as we get home it will later at night. When he’s already had his dinner and he’s playing video games while he jumps up and down. Stimming so hard that I feel dizzy just watching him. He gets mad at the game and then it all comes out.

He’s stupid. He’s a dummy head. Nobody likes him. He’s so STUPID and he HATES IT and he’s going to lose recess forever and nobody wants him. That the police should take him away and then he falls in a heap and sobs.

I sit down with him and I ask if I can hold him. I rock my six year old and I tell him that I’m so sorry that he feels that way. Then I tell him all the things I like about him. The things that he has recently mastered and things that he’s always been good at. I manage to make him laugh and snuggle with me.

What I really want to do is to storm into the school and demand why they think they can say such things. Why they think its alright to threaten a child who already has school anxiety that if he can’t behave, sit down, shut up and listen like a good little boy like everyone else. When the teacher says that she has it down and that they have a system but then turns around and takes things from him how does she think that she understands him?

One of my favorite quotes that I’ve seen since starting this journey is If you’ve met one person with autism, you’ve met one person with autism,Dr. Stephen Shore. Each and every child is different. Its not a linear line and children fall in different areas on different parts. While starting with a broad idea of what has worked for others it needs to be altered for each individual.

So no matter what each therapist and teacher thinks they are doing, for every person who says that he needs to stop doing everything in a routine becuase life just isn’t like that, I want to slam a stack of books down on autism and show them a video of him hating himself at home and then tell me what a good job they’re doing.

 

Note: I understand that it is a difficult task to be a teacher of an autistic kid. I am not intending to attack all teachers but when they continually take things away that he looks forward to and create an overall fear of school and anxiety but expect a pat on the back because they are ‘going above the call’ for putting my son in the corner, I’m not goign to give them that pat on the back.

Soccer season and mornings before school

Nobody is going to cheer my kid on on the sideline for not breaking down

Like many parents who have the luxury of sticking around on the playground to keep an eye on their kid my husband and I alternate going to school with DJ. When one little dispute can change the whole tone of the day you really want to make sure that he’s happy and doesn’t get in a spat. Social interactions are rough for a kiddo who wants to be everyones friend but some kids just don’t know how to take the hyper bouncing first grader who talks about any topic but the one everyone else is discussing.

Soccer started Monday and that means DJ’s schedule is a mess. It’ll take some time for him to get back into the rhythm of it but for the current moment in time, everything is soccer. He must have a ball to kick around the field every morning to show off his mad soccer skills. He’s come really far from Kindgergarten but the other kids still run circles around DJ. There is a lil gal who in the begining of the school year used to single him out and caused him a bit of distress now they’re inseperable.  Today the pair nabbed a bouncey kickbal and ran for the field. For about ten glorious minutes it was just the two of htem taking turns making goals and blocking.

Then as time passed more kids filled out on the playground and of course more kids joined. THe first few figured out the rhythm pretty quickly. You kick the ball towards hte goal and if you make a goal you get to be goalie. Turns were taken. Then the rest of the really ‘good’ soccer kids came out. I’m talking the ones who catch the ball on their head and block with their chests, the ones that cry out ‘handball’ when someone puts their hands on the ball. Kids that ran circles around DJ and his friend who just gave up and turned cartwheels.

DJ bemoaned what they were doing. Chasing them around informing them of the rules of free for all. They didn’t listen. Theykicked it past him and made goals. They didn’t take turns. They played….soccer.

DJ of course got upset and crossed his arms. I felt the tension in my gut rising waiting for the ear splitting scream that signaled the begining of his breakdown. I’d have to run over and talk to him about the fact that there are a lot of kids and while I loved the way that he and his friend had taken turns that soccer isn’t about taking turns. Just like the games he was going to be playing he may not get the ball very often but we were going to go to practice twice a week and me and his dad were going to help him on the weekend too.

He calmed down and then he started running with the pack of kids all chasing the ball. Often left in the dust as he runs a bit awkwardly compared to the rest of the kids. He figured it out though guys. He found joy in the running with the kids. He stopped laughed and cheered when someone kicked the ball and made a goal. He didn’t touch the ball for the rest of the time and he just supported everyone else.

I wanted to cry.

Nobody is gonna cheer on my kiddo on the sideline for not breaking down. No one realizes the great thing that I just witnessed today that he was able to get over the unfairness of something (as anyone will tell you a child with Autism will definitely point that out) and just enjoy a moment. Its one of those momma momments htat I wish I could just share with someone and hug them. THere wasn’t anyone there so I’m sharing it with you all today.

Complex emotions of the diagnosis

For us, the initial reaction is relief.

We started this journey before Kindergarten. Initial testing through school showed a lack of communicaiton skills that didn’t qualify DJ for any help through the school district. Behavior issues in Kinder gave a diagnosis of ADHD.  The notion of DJ being on the spectrum didn’t even come up until his pediatrician commented on it and I started to do research.  I tend to prepare for everything. I fell into the trap of self diagnosis as there is nothing thus far that summed every complex nuance of the quirkiness that is my kiddo who I still believe is a super hero.

Today he had his final step of his evaluation and the Psychologist did state that he’s on the spectrum. She has to finish scoring the test officially but as a mother who has a 25 year old child on the spectrum herself she is diagnosing him as having ASD.

Nothing changes for Dj. He still gets to happy dance and squirm. Fidget during class. He will still give that full belly laugh that makes everyone look becuase its a bit too loud while wanting things around him to be quiet. He will still have bad days in the good. The only thing that changes is that he gets some help when he loses his temper. He gets a little more time on tests. He will get help to help him relate to other people becuase his psychologist has said that he really doesn’t recognize emotion in others but feels deeply himself.

For us, the initial reaction is relief. Its take us time to get him tested. Like ridiculous amounts of calling around and suggestions that led to irritating months of people getting back to us. Of waiting lists and nothing happening. Of teachers taking away things that should not be taken away such as recess but its part of the teachers way of dealing with things that will not be allowed to happen. My knee jerk reaction is now to study up and prepare for the IEP that will still be months away.

There is also a measure of upset. DJ is still the same, we have already altered our parenting for an ASD or head strong child. (Mom has read some books lemme tell ya) It has helped with the rage attacks a great deal. We just know that he will struggle sometimes and its that struggle we don’t wish for our son. Some people will not understand. Some will not believe.  Some will think its an excuse for lax parenting. (I have some colorful words for those people but I will try and hold them back) I guess its a sense of mourning and I’m going to allow myself some time to go through those complex emotions before I buckle in and prepare to advocate for my son to get all the help he needs to navigate this already complex world for any neurotypical person.

I may love him a little bit fiercer for it. Knowing that he has a difficult time with others makes me love harder and want to hold him longer. I may let him get away with a few more cuddles before bed. (I know he’s just stalling but he gives really good cuddle hugs!) We thankfully have family who are understanding and supportive which has made all the difference. Grandparents, friends of grandparents, friends and co-workers of ours. Its enabled us to be better parents and I’m so grateful for all the help, but much more so for supporting DJ.

Losing friends

How can you explain to someone that they are just mean spirited?

My village is pretty much online. Friends I’ve made over the years as I’ve become increasingly introverted due to my own health issues. So when the virtual friends become friends that I can see on a day to day basis that means a lot. I don’t know if I was just so excited about having an adult friend that had the same interests that I didn’t pay attention to warning signs or that maybe I was just that desperate for a friend I’d have taken anything at that point.

To get her started we let her stay in our house with the express limitation of no more than three months. Having lived with others either friends or family in the past I knew that putting this out there before she ever arrived was mandatory. As well mentioning that she need to keep up with her own cleaning. We charged her no rent so she could get out and on her own. Within a few months and as I broached the subject of her finding a place (my husband had lost his job and we were having to look at moving to an apartment instead of renting a house), I quickly realized that she and I had different ideas of what being prepared to live by ones self meant. Her bills would not allow her to live on her own and she incurred considerable credit debt moving out here.

I felt somewhat guilty for it since she had moved from another state to this one. I like to think that it was never inferred that I would take care of her forever. I’m a fairly independant woman and before cancer I had worked and supported myself and my family. She suggested paying rent while here so we wouldn’t have to move which would be cheaper than her getting her own place. My husband suggested we move anyway and make sure that she understand that we had never agreed to this. I caved and so we stayed.

She and I were both going through considerable health issues. When she moved out here I was trying out Cardo Kickboxing to lose some of the weight that being Hypothyroid and dealing with Radiation had stacked on. It motovated me to get out of bed to get to class early, I made great connections with others who also inspired me to focus on my health. After she visited and took a practice class she joined too. What started out as an energetic morning for me soon turned to dread. Each time she asked when I was going she would get up and then refuse to acknowledge me. Rolling her eyes when I’d give her a cheerful good morning.

I can take a lot of irritating behavior. If she didn’t respect me as a person who was living in my house, fine she can be that way. It was slowly wearing on our friendship but so be it. When it spread to the treatment of my son however I found myself growing increasingly upset with her.

DJ is a chatterbox. Like most kids who think a bit differently with repetative behaviors he will say hi to someone. Over and over until they acknowledge him. She would look at him and then turn and look away, purposefully ignoring him. To the point where I had to start to tell him not to talk to her at all. WHILE SHE IS IN MY HOUSE MY SON HAD TO CHANGE FOR HER.  DJ had asked me if Auntie didn’t like him. If she was mad at him. How can you explain to someone that they are just mean spirited?

DJ’s behavior started to get increasingly bad in school and we were having problems with his attention. Auntie suggested we show more of a spine. That if she had acted that way her mother would have beat her. SO now she is suggesting I beat the behavior out of my son. Among with other treatments to show him who was boss becuase I was letting my son walk all over me. When telling her that even if my son was neurotypical I still would not beat him she just rolled her eyes at me.

I don’t at all believe I’m an angel but I will not let someone treat my son that way. The only best friend that I can count on is my husband as demonstrated time and time again. I have local people who I enjoy talking to but they either have schedules too busy to match my own or don’t have children. Lets face it I’m in bed in PJs by 9pm not ready to go grab a bite on the other side of town.

I don’t know that I will be able to reach out to someone again after this. I don’t know that I have the energy really to take a chance on someone. I’ve no doubt that some how in their mind that I’m the bully here as they are always the perpetual victim. I take responsiblity for not having brought this up sooner that maybe it could have been salvaged. I guess I’ll never know.

Hyperfocus

Should I ask him to help me?

We stopped asking for toys for DJ for christmas as we have three sets of grandparents in three different states who all like to buy him things. We have a playroom full of stuff that DJ uses for a week before returning back to whatever held his focus before.

He likes video games. I know, its one of those things that make people make that face. Are you making it now? I moderate his time and I do limit things that he does. He has some kid rpg games that make him read becuase picking up a book makes him tic like crazy and get stressed. I’m not saying we dont read books, we just know to keep it to the evening when he’s winding down.

He also has a soccer net but the weather is chilly and this mom is not sitting her butt in the cold until it warms up another ten degrees. We have taken him bowling which he’s getting really good at.

Yet its the video games that he always comes back to. The stimulation is vivid and sometimes loud. It changes and keeps his attention.  On days off he may have longer days of play but on school days he has only 2 hours of either TV or Video games. Part of those video game times must be playing a game that requires him to read and use critical thinking skills. I admit he’s already better than my husband and I at some of the games.

The thing about the games is that DJ came out of his shell talking about them. When you ask him about his day he shuts down and doesn’t want to talk about it. But let him get going talking about stats on America Ninja Warrior or the gear he has on his current character.  He balances stats to make the character have the best overal play in ways that I just scratch my chin at. The best part about it is that he figured it out for himself. Through trial and error he’s figured out the subtle nuances to the game system to balance for his style of gaming.

I guess the question I have to ask myself is…..should I ask him to help me? 😉