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Hodge Podge

It has been 8 hours since I gave Diego his morning dose of Tenex, in those 8 hours he has been a dazed and drowsy 5 year-old.  He has just laid around and watched cartoons, with no energy to do much else. 

This is very hard to watch.

I understand that this will more than likely get much better, hopefully sooner than later, but it is rough…right…now. 

I already have this horrible feeling in my stomach every time I crush the pill, mix it with applesauce, and give it to him, despite the fact that it is working. 

It was a manageable feeling when he was not really experiencing any side effects, but  today with a bit of side effects, the horrible feeling is anything but manageable.

The Tenex is doing a good job overall and I will keep this at the forefront of my mind while watching D in his zombielike state.

When I went to get D from school on Friday his poor teacher was horrified as she recounted the story of Diego’s self-injury that occurred that day.  He was in the writing group  and kept getting frustrated because his letters weren’t “perfect” and proceeded to hit himself  four different times.  His teacher did her best to redirect him each time,but when D is on his quest for perfection it’s nearly impossible to get him to think of anything else but.  She eventually had him move on to another activity with moderate resistance.  This is the first time he has demonstrated self-injury to this degree at school and it really concerned her. Unfortunately this isn’t new to me.I discussed different ways to handle it, if it happened again, and I spent a lot of time comforting her.

As I write this it is unreal that this is part of our reality, that self injury doesn’t jar me the way it once did.

I am so thankful for this blog.

Writing is my only way to process all of this.

Yesterday I met with the neuropsych that I initially took D to see a year ago when I had my ASD suspicions.  The one that told me that based on her 90 minute assessment, that she didn’t think that D was on the spectrum, but bring him back in a year and that she would re-assess. 

Despite the fact that Diego has now been diagnosed with ASD, I made the appointment to see her and then made the appointment for D’s assessment which isnt until October.  So when we met yesterday, I came with all of my reports not expecting much from her. 

My general opinion of neuropsychiatrists isn’t very high due to some crappy experiences, but after reading over everything that I brought, that woman looked at me and said he is definitely Asperger’s/HFA.  She told me that with all of the interventions Diego has had, if it wasn’t ASD he would have gotten better, he hasn’t.

Duh

She went on to explain her hesitance in making this diagnosis a year ago, as she feels ASD is typically being overdiagnosed.

I could tell she was scrambling. 

I let her for a bit.

I finaly explained to her that I understood her hesitance, but that she may want to LISTEN to the mother of  the next child a bit more. 

If I have learned anything it is that I KNOW my baby and I would assume that most mothers of sound mind and body (this is subjective..lol) are on the same boat. 

So with that said, she stated that she will repeat the ADOS in October and that is that. 

I couldn’t care less about this upcoming assessment as it will have no effect on what we already know.  The only thing that may come out of it is that the school district and the regional center may pull their collective heads out of their collective  asses and give D the services he needs.

Which brings me to Kindergarten, I just want to scream every time I think about it. But ‘think’ I must because Kindergarten starts in 2 weeks, and the reality isn’t going anywhere….at all.  

In three weeks D will be starting a social skills group with a focus on school readiness and I am hopeful that this will give him better coping skills for school.

blah

On a lighter note, last night I gave D some craft supplies and he came up with the ‘Blue Whale’ masterpiece below!

Yup, I just wanna bite him!! 🙂

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About sonidoinquieto

I hate writing bios *bio pending*

12 responses »

  1. Hi! I saw your blog on hopeful parents. my daughter has rett syndrome and is also taking Tenex for ADHD. We just increased the dosage 1/2 mg in the AM and 1/2 in the PM. At first we had a few of those days where she just sat on the couch and fell asleep! Which was not our girl! We have had a few days where she has napped (when she stopped napping back in Feb) but now we are seeing less, if not zero, drowsiness. We still see her ADHD rearing it head but there are these mini moments when she sits and wants to play, picks up a book or a toy. We havent seen that in a year. So, keep it up! You never know. I hated to give her meds too-but I feel like I have to try everything to help her and this is just one of those things!
    Erica

    Reply
  2. Hang in there with both the meds and the neuropsychiatrist (you already know my opinion on most of them). Dealing with both can be odious, but you’ve really processed everything, you’re doing great. Hang in there. It was a long haul for our son with medication, but eventually it really helped him and our family.

    Reply
  3. Thank you guys, you are the greatest!

    Reply
  4. I know how you feel about the medication — if he is too drowsy, maybe you could cut back on the dose.

    Trust your gut.

    Same thing was happening last year with E-Niner. I was giving him the dose that the psychiatrist prescribed, but in hindsight it was too much. The side effects (drowsiness) was more than it should have been. We cut his dose, and found that he was less drowsy.

    It’s hard to find the right dose — balancing the side effects (because there are ALWAYS side effects) with the benefits. But trust your gut.

    Love the whale!

    Reply
  5. good job mama. as my friend carrie says, take an a.

    Reply
  6. therocchronicles

    Love, love, love the whale! And kudos to you for speaking up and telling the doc that she should listen to the mothers! I’ll never forget being told “I can tell by looking at him that he doesn’t have Autism” by a (former) pediatrician!

    Reply
  7. I found your blog while surfing a few of my other fave autism blogs. 🙂 This post made me gasp outloud and want to just high 5 you through the screen. Good for you for teaching that MD a very valuable lesson in such a calm, gracious way. If there’s one thing I hear echoed over and over again from other autism parents, it’s that our initial concerns are too often dismissed by the medical and psychiatric community. It gets old. Hopefully this doc will do a little introspection and reframe how she approaches the next parent who is worried his/her child is autistic.

    Reply
  8. You’re a fabulous mom Shivon. And yes – you DO know your child best. I’m glad you stuck to your guns and stood your ground.

    D’s whale is AWESOME!
    🙂

    Reply
  9. Shivon greater things will come from this than you could possibly wrap your mind around. Stay up sis!
    And I don’t know a 5 yr. old who has ever made a better whale then that one.

    Reply
  10. One thing that will always endear my pediatrician to me is that when we were first noticing Jack’s language delay, he asked, “Do you have a feeling about him?” I think that makes him a good doctor.

    Hang in there. School is so hard. You aren’t alone.

    And that blue whale is gorgeous.

    Reply
  11. Good for you for speaking your mind at the doctor’s appt. A mother’s intuition is a powerful thing, and while it doesn’t help you immediately you might have just helped the mother and kid who had their appointment after you.
    I thank goodness for your blog as well. Since our kids are only a year apart, it’s been helping me to read what you’re going through. Thank you.
    Alysia

    Reply

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