Complex emotions of the diagnosis

For us, the initial reaction is relief.

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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? 😉

Troll in the dungeons!

I cannot fathom the mind of an internet troll

 

Ok having mentioned that I have ADHD and get distracted, often. I fully expect to once in a while forget to post. I’ll try to even get a few ready to post so in the event I don’t get to post I’ll have some that can just be thrown up as entertainment. So apologies in advance.

I thought it may be a good idea to motivate me to start this blog. I am Bipolar and prone to depression and having spoken to a councilor before I know that stress can sometimes be alleviated by talking to someone or writing if you cannot or will not speak to someone. I also don’t have a village. We live in Las Vegas and our family is all out of state.

The other reason is I follow several pages on Facebook for ASD support. I mainly listen to the stories and recognize a good deal that is mirrored in my own son. I follow to make me feel a little less like a failure on a bad day and laugh at the good natured antics on the funny quirky stuff that is shared.

So in that vein, I posted a question asking for help finding a therapist in my area who work with ASD children to get a diagnosis. Someone recently happened upon that post and felt compelled to message me via messenger to rip me a new one. Why someone would beat down on a stranger I have no idea, I cannot fathom the mind of your typical internet troll. I tried to think on her kindly that maybe someone had taken advantage of her or her family, maybe she met one of those parents that fake illness in their children for attention. Whatever the case may be the woman commented that I had no right to post or comment on the page since my son is not diagnosed.

I reported it to the page admin and then responded to the woman. Saying that even if DJ is not diagnosed as being on the spectrum that I am at least learning a lot from the page as well the stories. Not to mention offering support of another parent from the vantage of a person who also has a child with different way of interacting with the world. Then blocked her so she could not harass me again.

I hope that whatever caused her to lash out at a stranger is resolved because that sort of thinking only hurts you in the long run as well. So, good luck lady and I wish you the support of the community that you apparently desire to push away.

Current reading list

My library checkout list, whats missing?

 

mgyS0Xg

I’m new on the ASD info curve. We’re still waiting for final word even though his therapist has said he is on the spectrum. Whether its enough to give him qualified as ‘on the spectrum enough’ to get help will be up to the Psychologist to determine at the end of the month. So, I’m reading everything I can at my local library (I tend to do better with a book in hand rather than reading online) to educate myself. Here is my current checkout list:

  • School success for kids with HIgh-Functioning Autism by Stephan M Silverman ph.d.
  • The Autistic brain , Thinking across The spectrum by Temple Grandin
  • The un-prescription for Autism by Janet Lintala
  • The reason I jump by Naoki Higashida

 

What are the must reads for Parents or Teachers of HFASD? Any suggestions or warnings? Thanks for the suggestions ❤

The face you make

I may have grinch smiled just a little bit at the change in her tone..

giphy

I don’t like to get people in trouble and we’re all human and we make mistakes. However arguing with me about a mistake that you don’t want to admit to when it directly affects my son brings out my momma bear.

We finally found a place that would do a full evaluation.  The tests would be broken up over two days. You don’t understand the joy that I felt once we had this thing scheduled. I think there was happy dancing, coffee in hand of course. It had been FOUR MONTHS of searching, calling around and asking for help from the school. Then the day before they told me that an emergency had popped up and the doctor had to reschedule. My insurance coverage ended the following monday. I was heart broken, I’m pretty sure I was about to cry when they said they’d call back if they could work me in.

The sky opened up and a rainbow landed on my house when she told me she was able to reschedule to get us in on mondayat 1pm. I was over the moon. We went for part one of the testing on Friday, on my way out I paused at the front desk and said “Thank you so much he had fun. We will see you Monday afternoon at One?” Smiling back she said, “Yep, have a good weekend.”

Narrator: The weekend would be good but it would not in fact be a good week.

I picked up DJ at school taking him out early for the appt at noon so he doesn’t miss too much school and as I parked the car the lady called me and told me that I had missed my appointment. I think I almost threw up.

Calling back I told her no, our appt was at 1 and we were on our way. The woman on the phone corrected me and said we’d have to get in a few weeks. I got a bit angry reminding her that my insurance coverage ended TODAY. Raising her voice she counterd that she had already made lots of exceptions and went out of her way to reschedule someone else. I thanked her for that I understand how that may have inconvinenced someone else but  I reminded her that I had confirmed the appointment time on my way out and what her words were. She flippantly said that she wasn’t paying attention.

I was so angry that I was in tears. All of this down the tubes. She told me to call back when I knew what my new insurance was and they would see about getting us in then hung up on me. So there is my backstory. I wasn’t certain I could call her back but there is just one more test. I called last week and got someone else this time who explained they had to figure out how to bill just the one test and would get back to me. No one called back. I have gone to the website of this place on FB and noticed negative reviews about scheduling. So this is a thing. I just…need a test. I don’t even want to go to therapy here with them I just need someone to help me figure out how to help my son. To enable the school, to help my son. If I have to camp out on their damn doorstep I will.

Thankfully that is not necessary. I put on my big girl pants and called again and they will be calling me back. She was apologetic about the scheduling, without out right saying she screwed up its as good as I’m going to get. Its fine as long as they get my son in before the end of the school year. But I may have grinch smiled just a little bit at the change in her tone…. I’m going to enjoy my frozen coffee now.

The long road to diagnosis

Some people are resistant to labels

So if you’ve read the introduction to this page you’ll know that we are still waiting on a diagnosis. We’ve been trying to get into a psychiatrist or neurologist to do whatever tests required to figure out just what makes DJ a little bit different.

Some people are resistant to labels. People already assume things about him and call him things no doubt. The bad kid or the one who cries a lot. They probably call him loud. Having a diagnosis will give us a link to those who have come before us. From support from therapists and psychologists to the therapy that the school offers.

The 504 Plan is a plan developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives accommodations that will ensure their academic success and access to the learning environment.  An IEP is an individualized education program, it ensures the same thing but the school also gets additional funding to help out. I’m all for the later in a school district that constantly needs help.

In either a 504 or an IEP we outline what needs DJ has and makes sure that according to law he gets them. From having his desk slightly away from the rest of the class so no one touches him on his bad days, to the noise canceling headphones when the class is overwhelmingly loud and to the allowance of his going to the nurse’s office to go to the bathroom. We can only get this help, this protection for him if he has a label. So you see why I’m less resistant to that.

I have never lived in a state that had so many issues in finding someone to run the evaluations. With changes in our health insurance it certainly hasn’t helped. We now have insurance through my husband’s work but the mental health network set us up with an appointment to evaluate what sort of testing we need to refer us out but the referral was to a psychologist who doesn’t take insurance at all. It’s exhausting for me calling and fighting.

To add to the stress before our insurance changed we had begun the evaluation elsewhere, the only test left is the test for ASD. The woman who scheduled the appt informed us the wrong time. While walking out from our appointment I CONFIRMED WITH HER that it was the following Monday at 1pm and she said “Yep, we will see you then” Only for her to call me at noon and say I missed my appointment. My coverage ended the following day. The woman was also angry since she had rescheduled an appt to work us in. Now we’re butting heads and they won’t return my phone calls.  Just…one….more…damn…test!!

So we are on the Ackerman Center for Autism waiting list. Granted if anyone is going to have a thorough understanding of ASD and have the best evaluation they would be it. Unfortunately everyone in the state and the surrounding states knows that too and we won’t be seen until late this summer. So what now? I keep calling around seeing who will take our insurance and will do a test for ASD and keep calling to the previous place to see if they will run that last test for us.

I think I need another coffee or three to deal with this….