Let The Griveing Process Begin (again)

As most of you know, Gabriel is a very complex child full of many acronyms and challenges. That said, our biggest hurdle in the last two years has definitely been his mood swings. Because of those issues, and his other destructive and dangerous behaviors we are going to see Dr. King.

Dr. King has been touted as "the" leading expert here in the Seattle area on child psychiatry. He is the expert psychiatrist for children with autism. He is the last word on diagnosis as far as the state is concerned (legal, educational, etc) and we are beyond honored to be able to see him tomorrow.

That also comes with some sense of getting a definitive answer or diagnosis. It is hard for doctors to want to label a child with Bipolar at such a young age, but in this case, I think they will. Actually, I will be surprised to hear anything else given that Gabriel's birth mother is reported to be Bipolar.

I am a little overwhelmed at the sheer thought of getting the diagnosis because it truly is a life sentence. A life of medication, hospitalization and continued psychiatric care.

I think it is fair to say that having a child with SPD, and High Functioning Autism is enough to keep me back and forth to doctors for the rest of my life, but this Bipolar thing is another beast all together.

The Bipolar Monster is something that will require the utmost dedication by our family to just keep Gabriel safe--alive--and out of jail.

My sweet boy, with the toothless smile, who really wants to be a great kid and has the most golden of hearts, will continue to fight this battle in his brain for the rest of his life.

I am just being honest when I say that this impending appointment has me grieving this (potential) newest diagnosis in what feels like a never ending string of letters.

As a mom of a child with special needs I often question my ability to do this. Sometimes I feel the stress is too great, sometimes I feel I am not qualified or educated enough, sometimes I feel like the worst parent on the planet for not being more patient, more saintly or flat out happier for what I have. Not every day is roses. Not every day feels like a blessing.

I find strength through other parents out there--those who I read about on their blogs, and those who I have the pleasure of meeting in person. But, no matter how much I fill myself up, and find support for me, I am still not positive I can do this for the rest of my life.

Don't hear me wrong -- I WILL do this. Yes, we special needs moms never quit, and this isn't the time I will either, but really, how much can one person (kid) take?

Grieving is a process. It has steps, which must be followed. And although I am no grief expert, I have charted this territory before, time and time again, with each new thing that I am faced with in response to my son's treatment or prognosis and this will be no different.

The 5 Stages of Grief

Denial
Anger
Bargaining
Depression
Acceptance

Each step means something different for the person experiencing the loss. Each acronym may represent grieving the loss of a dream or perhaps the loss of what you *thought* your future or your child's future would hold. But each of us has to experience this grief in our own time, careful not to get stuck on one step for too long (that is when you need to seek counseling for yourself), but sure to go through each step.

I think my tears come from being on the cusp of Acceptance. I have been grieving this diagnosis since we first heard it when Gabriel was 4. I believed that since he could successfully be on anti-anxiety meds that he wasn't Bipolar--a suggestion that the meds might push him to mania if he was Bipolar (which apparently is common, but I am NO expert) which didn't happen--meant he wasn't Bipolar in my myopic view. So I shelved the diagnosis.

But, then that word kept surfacing during all my late night Googling sessions -- you know what I am talking about -- where us moms start to enter symptoms into a Google search box with the theory that Google is the best MD in the world. I learned a little more, a little more, a little more and all of those light bulb moments brought me to Dr. Stobbe (which is now Seattle Children's Autism) just over a year ago and again the word Bipolar was used. Carefully.

I was told he didn't have the traditional two cycles a year--that he was only NOT stable in Spring. But, they still opted to give him Trileptal which is a mood stabilizer used for Bipolar. And it has worked wonders.

Then this last year Gabriel had his first manic cycle in fall -- anger and aggression that started around October and peeked the first week of December (read that post here). I thought we would have to hospitalize him, but we got an emergency appointment with Dr. Stobbe and the term Bipolar came up again while we increased his meds.

I am no stranger to the idea that my son could be Bipolar. But the Acceptance of him being Bipolar is another thing all together.

Gabriel is excitedly anticipating meeting Dr. King tomorrow. With a name like "King" Gabriel is really hoping this man can perform miracles and I'd be lying to say I didn't have the same hope.

Gabriel recently told me he couldn't wait to see Dr. King, and when I asked him why, he said,

"I want to ask him how to stop the fits from coming."

"You could go to your room and calm down." Nick says, obviously smarter than Dr. King.

Gabriel got angry, "NO NICK! That's not what I mean!"

"You mean that you want to not have the fit at ALL, right? You don't need to know what to do when you are having a fit, but rather want to stop them from happening." I said.

"Yes. I don't want to have the fit EVER." Says Gabriel.

He is in mental pain--mental agony from this. It takes over his brain and he can't shut it out. It worries me. To. No. End.

So I will leave you today, wishing you all well in your grieving process, no matter which step you are on. Take a minute today to think about all you have accomplished with your child, and allow yourself to move towards Acceptance while I do the same.

H

19 comments:

Your Therapy Source Inc said...

Good luck tomorrow! Very well written post.

GB's Mom said...

Best wishes tomorrow. The right doctor makes all the difference. My soon to be 7 year old was diagnosed with early onset bipolar,3 years ago. The bipolar meds keep her stable has long as the stress level doesn't get to high. She is also FASD, so school ratches up that stress level. It was almost a relief for me to get the diagnosis- then I could move forward looking at what works. I will pray for you and your family.

Natalie said...

Poor kid! I pray that you'll get some helpful information at this appointment so that Gabe can stop the fits from coming at all.
Natalie

Hartley said...

A big thank you to everyone for the good thoughts. I am sure we will be fine, and like GB's Mom said, having information gives me a direction to run in.

Just gonna double knot my shoes for this one--

Hartley

Heather B said...

My heart goes out to you. We are struggling right now with having my son evaluated for Aspergers. I seem to be avoiding it because I fear that I will hear what I "know" is not true.

Gabriel was brought to you for a reason. It is said that we will never be given more than we can handle. It is NOT said that we won't be challenged to the very edge of our being. You are an amazing mom to be pursuing something that frightens you so much.

Hang in there. {{hugs}}

Heather

Hartley said...

Heather,

I hear you! I wrote this post after our Autism Diagnosis set in and I realized I was grieving it:

http://www.hartleysboys.com/2009/03/next-thing-to-grieve.html

I think you will be able to relate.

Hope your boys are in Wii heaven soon!

Hartley

marythemom said...

Of all my children's many diagnoses, bipolar is the "best" because it is one of few that can be treated with medication. Meds don't cure it, but they can remove almost all symptoms.

Mary in TX

Megan said...

Wow! I truly understand the grief process over the "diagnosis." It is an awful thing to realize that your precious child will have a life long battle with a monster in their brain that at times will try to kill them. That sounds so negative, I know, but I feel that I have spent the last seven years trying to keep Caroline alive, yes functioning too, but often just alive. Bipolar disorder is so much more than mood swings, as I am sure you have read (The Bipolar Child?) It is a whole-brain disorder, involving everything from sleep, to temperature regulation, to hearing voices, to being unable to pick up on social cues, to OCD obsessions, and it can even afftect their IQ, as we have experienced. Early onset bipolar disorder is so different from the adult types. The mixed state is quite prevalent in the early years. Hang in there. You seem to be an amazing woman. Thanks for commenting on my blog! I look forward to getting to know you.

Anonymous said...

I'll be thinking of you tomorrow. I hope the doctor is wonderful and helpful, and doesn't add too much to your alphabet soup.

Cathy

Megan said...

I just want to add that there is great hope for these kids. If they learn while they are young how important it is to take their meds, to go to therapy, and that Mom and Dad always have their best interests in mind, they can succeed in life, by God's grace. There have been times of great suffering, but many times of peace and joy as well. You just have to cling to hope during the tough times, even allowing others to hope for you when you can't see anything but darkness.

Sasha said...

Hugs to you today. Let us know how it goes.

Hartley said...

Thank you to everyone!

Megan, I love the line about letting others hope for you when things are too dark to hope for yourself. I will remember that.

I do truly believe that we can do this--that Gabriel will learn to take his meds (we have been instilling that in him for a year now, and hopefully he will accept it as fact ongoing) and that he will lead a happy and healthy life. I know he can do it--and I know he WANTS to do it!

I will report back. :)

Hartley

Sheilah said...

Read this! It has helped me so much. Best of luck to you in your journey.
http://www.pediatricservices.com/prof/prof-15.htm

therextras said...

Just wanted to stop in and share this blog - a mother with a daughter who has the diagnosis.

http://cindajohnson.blogspot.com/

Barbara

Hartley said...

Sheilah,

Thank you for the information, I'll check it out!

Barbara,

I found that blog too. Thank you for thinking of us--I am sure I will be reading ALOT on Bipolar disorder soon!

Hartley

Mia said...

Nearly in tears reading your post. Such grief returns within me whenever I read another's process. It is heart breaking, really, what we and our children go through. I can recall so many times, not so long ago where I thought, "I just want it all to stop"...but alas, it doesn't. We just dig down, find another fleck of strength within us and ride that wave for as long as possible, until the underground resources must be touched again.

I'm here with you. I understand. The understanding that we can only get from each other. Please forgive this, but I'm not sure if you've read this. http://www.generalhysteria.com/2008/12/the-acceptance-of-grief-the-long-version/

I hope to keep in touch more and wanted to let you know, I'm adding your blog to a list of blogs to read on my Examiner page. (hugs)

Jan said...

Thanks for your wonderful blog. I am a mother of a bipolar teen. my heart goes out to you.This is not easy.
http://mombipolar613.blogspot.com

Becky said...

"Don't hear me wrong -- I WILL do this. Yes, we special needs moms never quit, and this isn't the time I will either, but really, how much can one person (kid) take?"
I understand and relate to this statement... My son has been diagnosed with SPD but we are undergoing other tests and appointments for various other things and there are days I feel like quitting, but I know I never will. We love em too much!

Patty O. said...

This is heartbreaking. Sometimes I just have to wonder why God lets our kids suffer like this. I admire your tenacity. Good luck, and despite my anger with God, I will keep you in my prayers.