Tuesday, April 6, 2010

Update on Bearhug (part 1)

So, last month we had Bearhug's appointment with a psychiatrist. We drove almost an hour away to see one who specializes in seeing children on the spectrum. I've kind of debated with myself how much to share here, but how many hours have I spent scouring the internet hoping to find a similar story to ours, in search of some answers? I don't have any answers to offer yet, but here goes...

We felt a little awkward going to the appointment, since we scheduled it back in November in the midst of some very difficult times for Bearhug. Since then, he'd been doing better, minus one big blowout in mid-January. But since it took so long to get in, we wanted to keep the appointment, figuring that if he started to have a rough time again it would hopefully be easier to get in for a follow-up without having to wait another three months.

I'm soo glad that we did.

The appointment went well. She talked to Bearhug for a while before inviting him to play with the toys in her office while she spoke with us. She started out with basic questions, and I had to laugh when he answered a question about his siblings with this:

"'Cuddlebug' says he was born ten minutes earlier, but I'm stronger!" lol (Cuddlebug was actually born two minutes earlier, not ten, but who's counting?).

After a few minutes of chit-chat, he asked her, "are we going to talk about why I'm here?" We had talked to him beforehand about what kind of doctor she is and why we were taking him to see her. I think he is as much hoping for some answers and help with these problems as we are.

I was really impressed with his ability to articulate the experiences from his perspective. He described how he feels so angry that he just "goes nuts" and "runs to get away" or "attacks people."

At one point she asked him if he's ever thought about killing himself. He said yes, and my heart broke for him. He is only 8 years old. She asked if he's ever tried to do anything about those thoughts, and he said yes again. I admit I was stunned to hear that, I wanted to cry but I needed to stay calm so that he would continue to answer her questions honestly and not feel that he'd said anything wrong. She asked what he had done, and he told her he hit himself in the head and banged his head against the wall. I've seen him do that, but had no idea that he had that intent behind it (at least some of the time apparently).

She recommended scheduling to meet with a psychologist closer to home on a more regular basis for talking / play therapy.

She ordered some blood work to see if there are any biological issues (blood sugar, vitamin deficiencies, whatever) that might need to be addressed (and I think also to get a baseline of his blood levels in the event that we may need to look at trying medication). She also suggested taking him to a neurologist to rule out seizures or other neurological issues.

We saw the neurologist about a week later. He suggested that these are "rage attacks" but ordered an EEG in case there is also some seizure activity. Bearhug has mentioned that he can feel these "episodes" coming on just before they happen, so they asked what that feels like. He said he feels a pain in his arm, that moves to his shoulder, and then it starts. We are trying to work with him on letting someone (us or a teacher if he's at school) know if he feels like that so we can try to help him calm down or at least get somewhere where it's safe to blow off steam if needed before things get out of control. Not that we've been particularly successful with that yet, but we ARE working on it...

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K- floortime lite mama on April 6, 2010 at 7:36 AM said...

Many many many hugs
Thank you so much for sharing your journey D
Your love and compassion for your kids just really comes through
The response to - the suicide question is making me cry as well .
Though at the same time I remember as a child- me and my sister threatening our parents with suicide as well -
Children often say things like " I will kill myself/run away and then they will be sorry "
So maybe its not as serious as it feels on first glance
One interesting thing here that I see is that CB who is a twin ( and in the same classroom - right?) - so similar genes and similar enviroment does not have this response
Another thing I was thinking was that anger and fear are two incarnations of the same emotion
The latter is very prevalent in R and I sometimes wonder how things will be when he is more aware, cares about peers etc

Territory Mom on April 6, 2010 at 12:32 PM said...

You'll find an answer I know you will.

Anonymous said...

Stories of your boys and your loving parenting does help others, I believe. Barbara

Beverly on April 8, 2010 at 12:43 AM said...

glad the visit went well. It is so nice he can explain and tell you how he feels. this is something I pray for for my Noah.

Rachel on April 9, 2010 at 2:42 PM said...

Oh Danette -

My heart just broke reading this.

It is hard being a kid who is different. It is even harder knowing it.

I am so glad he was able to talk about it and to describe what he feels. So happy that this may lead to something that really helps.

So glad you are a parent to cares.

Elizabeth Channel on April 9, 2010 at 11:38 PM said...

Oh, my heart goes out to you, but please know you are not alone in hearing similar answers to those painful questions. Please keep us updated on the EEG and know that we are praying for you.

Penelope on April 11, 2010 at 7:45 PM said...

My heart broke reading this. It sounds like such a hard thing to go through, but it sounds like Bearhug is a trooper. I am amazed at what insight he has, to be able to face the situation and to give such honest answers.

Thanks for sharing your story. My prayers go out to you and your family!

Krystal on April 13, 2010 at 10:58 AM said...

I know I have not been around a lot lately, particularly because we are dealing with issues similar to Bearhug's with Little Kong. I know the fears and anxieties you are going through as a mom and I can only imagine what he is going through as I am seeing similar with Little Kong.

Please know that I am here for you and feel free to shoot me an email any time and we can even exchange numbers to have someone to vent with.


Adoption of Jane on April 15, 2010 at 11:35 AM said...

What a breakthrough. I am so happy for your family that he reacted so well to therapist and you are getting some answers. This has helped me a lot. My son is 3 and I never thought of being proactive on the "mental" side of things. I will start searching for something like this in my area. You've helped me and I appreciate that, so glad you decided to share your story. By the way your boys are so darn cute!! Handsome as ever!!

Anonymous said...

Oh my. I've been thinking of you all. I am glad that the appointment went well and that you are able to get some help for him. How GREAT that he could explain a little how he feels. Thank you for sharing with us. Sometimes I don't know how much to share either- though are challenges are different. ((HUGS))


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I'm a mom of three boys on the autism spectrum, 11-yr-old identical twins and a 7-yr-old. My husband is a SAHD.


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