A life, re-arranged.

It’s been a little over a year but yet sometimes it’s hard to process…to do…to deal with.

It’s been hard to put into words because I don’t want to sound like I’m whining or wanting people to feel sorry for me.  Because I’m not whining and I don’t want you to feel sorry for me.  To be quite honest, at first I wasn’t sure why I decided to put this out in the open but as I pondered my intention it became clear that I’m sharing because this can be lonely.  As a parent, you feel like nobody understands and everybody has something to say, which most times is negative.  You feel alone.  I want other mamas/parents to know that you’re not.

I’ve learned so much over the past 14 months and even though I’m pushed to the brink of insanity on a daily basis, this has had my eyes wide open.  It has been quite the journey and learning experience and I must say that I do see light at the end of the tunnel.

Y’all must be asking “wtf is she talking about?”  So I’ll just rewind to 4 years ago
and start from when the portals started to open but I was desperately trying to close them.  And keep them closed.

Radical #2 loved his pediatrician.  I never dreaded any doctor visits.  I didn’t over-analyze how the doctor moved to another building and had a completely new staff.  Radical #2’s name is called and we walk to the nurse’s station.  As soon as she comes to take his temperature he goes into a full-blown tantrum.  He went from a sweet little boy to demon child in 0.2 seconds.  The rest of the appointment was a complete nightmare – kicking and screaming, holding demon child down as if we’re about to perform an exorcism.  Radical #1 looked terrified and did I mention I was 6 months pregnant?

After his exorcism check-up, the doctor drops the bomb on me.  The doctor, ever so kindly, says that he’s referring me to a therapist to rule out the A-word, also known as Autism.  He goes on with how concerned he is with Radical #2’s behavior today and blah, blah, blah.  As if I wasn’t flustered enough? 

I was having hot flashes as I loaded the Radicals into the car and I just let it out.  I started to cry.  I wasn’t sure if it was my pregnancy hormones making me super emotional or if I was frustrated because my damn child is 3 and isn’t this normal 3-year-old behavior?  But then again, I ain’t no doctor so what the heck do I know. 

I blew his list of therapists off and went on with life.  I did however have the “let’s rule out the A-word” constantly lingering and found myself noticing Radical #2’s behavior.  But still, I’d push it aside and tell myself that we’d get through this.  It’s just a phase.  If I just buckle down and stop letting him get his way all the time, this too shall pass.  But for fuck’s sake I couldn’t take the screaming anymore and gave in to his demon behavior.  And also, I didn’t need the crazy neighbor next door calling CPS on me again.

10 months later we move thinking that if we’re closer to friends and family and we’d get out more things will change. His behavior was the same; sometimes worse.

With Radical #1 in school & Radical #3 in daycare I figured why not give this therapy a try.  We have nothing to lose.  I did learn, however, that I was a horrible mother and how I needed to follow through with consequences and spend more time with my children.  Okay, that’s not what she said but I did everything she told me to and everything was the same so after a while I dreaded going to therapy.  I just didn’t see the point anymore.  We succeeded in his sessions so now what?  We just keep doing this just to do it?  There was no progression, no back-up plan, no ‘what if this happens’ so we stopped going. 

I enrolled him in pre-school.  He did great.  There were no reports of demon-like behavior except once but that was only once.  No biggie; we’re in the clear.

Fast forward to Kinder Camp (a day long orientation for the newbies).  He’s restless during the assembly.  There was a portion during the day when the children had to go to their new class and the parents had to stay back to listen to more speeches. 

And alas, the demon-child has returned. 

The first half of his kindergarten life was an emotional roller-coaster.  I will admit that I was flabbergasted at his behavior because he did so great in pre-school.  I would get calls saying that security had to chase him down and hold him down because he was kicking, screaming, biting, etc.  I felt like he was a completely different child.  We had a meeting that consisted of his teacher (who I think is the best teacher ever), counselors, and other staff members.  They went on about his behavior, asked about his upbringing, and how we can work as a team to help him.  They put him on a 504 Plan and recommended the SEBD (Support for Emotional & Behavioral Development) program.  In the following weeks, DHS (Dept. of Human Services) and the school did their evaluations and there were more meetings. 

And then it hit me like a ton of bricks.  The previously said portals have been opened and this time there was no keeping them closed.  Insert another emotional roller-coaster ride.  This time I was focusing on myself; how I really was a horrible mother.  Why did I blind myself from this?  Why couldn’t I be more consistent with consequences?  Why did I let judgements of others and myself get in the way of seeing what was really happening?  Why?  Why was I so worried what other people would think?  Why did I focus on assuming that others were thinking that he’s just a little brat?  How the hell does a child become like this? 

I fell into a slump. And then I became angry and used the past to point the blame for all this nonsense.  The past, as in we lived in the boondocks and had no social life; we lived next to a crazy person and was afraid to go outside.  If the Husband had just listened, we wouldn’t be in this mess so therefore this is all his fault.

I was assigned a case worker and a therapist.  I was still full of anger and still beating myself up.  The first day I met with the therapist she told me what he was diagnosed with…ODD (Oppositional Defiant Disorder), PTSD, and ADHD.  I did an eye-roll so huge that I thought my eyeballs were going to pop out of my sockets.  I had so many emotions that I couldn’t keep up with.  I turned to anger and snapped at her how it seems as though doctors nowadays are so quick to diagnose children with ADHD.  But deep down I was ashamed because I felt as though I did this to him.  I created this chaos because I couldn’t handle the screaming and always gave in.  And then came the tears. 

The school completed their evaluations.  Everything was the same, as I expected, except for “he shows A-word like behavior.”  So because he prances on his tip toes and smells his food, that equals to the A-word?  And although the school cannot diagnose anybody, they still said it.  I will be honest and say that I was angry and confused because I, in that moment, became judgmental and ignorant.  I based my feelings and opinions on what I heard from others what the A-word was and I’ve been avoiding this word since he was 3 years old.  The truth was that I had no idea.  I had no idea how big the spectrum is.

This was unchartered territory. 

We were referred to LD & ADHD Center of HI which consisted of a 2-day testing.  I received his 28-page test results, which by the way will make anyone go crazy, and I was still confused.  For the life of me, I couldn’t see it.  I mean, of course he’s not going to be outgoing because he doesn’t know you.  After I got over my confusion I decided that the bottom line was to take the resources offered to help him.  Teaching myself to broaden my horizon so I can help him without losing my shit.  Don’t get me wrong, I lose my shit daily but knowing how to react makes some days easier than others.  I had another school meeting where we created his IEP (Individualized Education Program).

It took a while but I’m no longer focusing on what he’s diagnosed with, but rather how I’ll help him to navigate the world and be the best version of himself.  That’s what’s important.  You know that saying “don’t judge someone until you’ve walked in their shoes?”  I really take that to heart because if you haven’t then you don’t really know. 

I get the “oh, if my kids ever acted like that, they’d get slaps!” or “he just needs a good spanking!”  After all this, I feel like there’s a fine line between ‘not able to connect the dots fast enough acting out’ and just being a little shit because you feel like it (this was me when I was his age!).  The line is so fine that it becomes grouped into one and I feel that’s where the ignorance starts.  I’m not here to start a debate.  All I’m saying is that after going through all of this, this is how I view it.  I’m no expert but my eyes are wide open. 

He’s academically smart but can’t grasp and change gears as quickly as his peers when it comes to his emotions or social situations.  He can talk your ear off but only if he feels safe around you.  He’s a great artist that uses his drawings to communicate his feelings when he has difficulty using his words.  He’s unique in his own way but seems odd to people who don’t know him.  He is who he is and I’m doing what’s best for him to help him be his best, without expectations. 

He is making progress for sure but every day is different.  One day, I see the light beaming so brightly it’s blinding; the next day that same light is a faint glow.  The same goes for me - some days I hold it together and other days I lose my shit and every other word out of my mouth starts with F.  I’m now aware that “winging it” won’t work.  It takes pre-teaching, reminding, making sure I have back-ups, making sure to stay as close to the routine as possible.  It’s exhausting but I’m taking it one day at a time.

This is my our life, re-arranged.

Jenn