Crumbling: An honesty post

I have always said I would be completely honest in what I write here. I feel it’s important for people to understand the toll Autism takes on the entire family. This is an honesty post.

I’m at my breaking point. Gavin has taken such a toll on this family. The stress of everything he has going on and the behaviors that result is destroying my family. Elliott Richard is so stressed out that he is breaking out in hives. Gavin continues to tell ER things that terrify him. ER continues to have anxiety issues and nightmares as a result. Now, I’ll be honest and say I love all my kids but ER is my soft spot. I don’t know if it’s because he’s my first born or because of almost losing him when he was born. Watching him in the NICU for the weeks he was there changed me.

Every night I’m on the couch with ER so he can sleep and feel safe. Dr. Patti said we need to do whatever he needs to feel safe. However, for someone with a bad back it’s taking its toll. I’ll do anything to make him feel better so I just go without sleep.

Gavin was back at the cardiologist today as a follow up to his hospital trip the other day. It took up the whole day. Every time Gavin says anything about his chest we have to go back to the children’s hospital for a 12 lead and an ultrasound to make sure everything is ok. I had ER and EJ by myself for most of the day. EJ screamed almost the whole 6 hours they were gone. ER went to Grandma’s and had a great time. I took EJ for a wagon ride and Maggie for a walk at the same time. Did I mention I had less then 2 hours of sleep. I’m exhausted.

EJ is supposed to see the geneticist in the afternoon tomorrow and Lizze has 2 appointment’s as well. Her sleep study starts at 4pm Thurs and runs through at least 4pm Friday. I will have ALL the kids by myself the entire time. Lizze will find out if she is narcoleptic so it’s worth it.

After the cardiologist Gavin went to Dr. R for a meds check. We have been advised that next time he has another meltdown we have to take him to the children’s hospital. We need to get him on a psych hold for medical stabilization. That’s really the only thing we haven’t done yet.

We have been here before. The last time my uncle told me that sometimes you have to preserve the health of the healthy. We are getting to the point (and honestly we are there already and have been for some time) where there is nothing left to preserve.

Something has to give.

ER is having a nightmare.

To be continued…

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4 comments

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  1. 7KnsdS Dyaz diojkassy zwactchm ybromw katq qdqirgfr aizyee qbnuqbzs.

  2. Hi,
    I have 2 boys (Robin, 12, High functioning with learning disorder and Colin, 9, Asperger with a very high IQ). One thing is for sure….our life has never been boring since Robin joined us. But Colin is the bigger part. Aspergers are much better in giving arguments or discussing ;). Every day is a challenge and I agree with you, that safety is one of the most important things. And structure. My boys are still sleeping in our bed and since I stopped putting them back to their own beds and since I stopped reacting to the pressure from outside the boys are making big progress in school and life. Every day is a new challenge. And I love it. When I have a bad day I always try to see where have we been only 2 years ago. What was impossible then and what is possible now. Then I can see and feel the progress. Even when there are always so many steps backwards due to things rushing in from outside. But the boys have to learn to handle that. Big job.

    1. Thank you for sharing your story. I'm very pleased to meet you.

    • c on July 21, 2010 at 9:16 pm
    • Reply

    Hi,
    I have 3 kids w/ASD,one has "severe autism".
    He is 8 yrs old and not verbal.
    He too HATES to wear clothes!

    I know having 3 kids w/special needs,and they seemingly constant appointments we have(my older 2 also have medical problems,and I have Lupus/RA and some other stuff) gets old.

    My youngest is on meds for severe aggression.
    I have friends that have put there kids on psych hold and they said it was very helpful.
    But what can ya do?
    I guess take a nap when you can and be happy you don't gotta deal w/PMS(or maybe ya do….lol)

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