Special needs parenting and the “tough decisions”

Being a special needs parent is NEVER easy. Whether your child has Autism, another developmental disability or something as uncommon as schizoaffective disorder, life is challenging. We face things on a daily basis that most parent’s would consider their worst nightmare. We do it out of pure love and devotion for our children. Sometimes this requires us to make decisions that many people will question and even criticize us for. Sometimes issues present themselves and have no clear cut “right” or “wrong” answer. Sometimes we are forced into a position that requires us to make choices that could have serious implications in our children’s lives but at the same time have the very real potential to IMPROVE their lives as well.

We have found ourselves in one of these situations with Gavin. I wanted to share our story in order to give more insight into our plight as well as the plight faced by many special needs families

I have been telling you about Gavin and his decompensation. For anyone newer to the blog or unfamiliar with our story, Gavin has been diagnosed with Schizoaffective disorder as well as Aspergers (just to name a few). 

We have been struggling to manage the “schizo” side of the Schizoaffective disorder. Gavin has been hallucinating for a long time. After taking anti-psychotics for a few years he had a VERY serious reaction that had him in the Cleveland Clinic for about a week. So we have, over the last year, slowly brought anti-psychotics back on board. They are however, not effective, as the audio and visual hallucinations are persistent. That sums it up for right now. You’ll have to dig through the archives if you want to read more.

I met with Dr. R yesterday afternoon to figure out what we are going to do. We discussed his current state of being. He is clearly psychotic and the current medication regiment isn’t working.  Herein lies the problem. We have come to the end of the road as far as medications go. There is one medication left but it was a last resort for a reason. We knew this time would come and have been discussing this for a while now in preparation. We ALWAYS throughly research ANY and ALL medication changes and this was no exception. As it has been made clear the Zyprexa just is working anymore and Gavin is paying a very high price as a result.  Clozapine is the only medication left on the list of options. Clozapine is the most tightly controlled medication in the United States. We will only get 7 pills at a time. In order to get the script refilled the pharmacy MUST have a certified faxed copy of his white blood cell count from that day. This process will repeat every week for at least the first 6 months. After that the we will get 14 pills at a time and that will blood work every 2 weeks for at least the next 6 months. After at least one year we will move to 30 pills at a time and bloodwork once a month. He CANNOT miss a dose. If he does we have to start over from begining.

This medication is considered safe under these conditions and close monitoring. I’d be lying if I said this wasn’t making me nervous. However, I (and by “I”, of course I mean Lizze and I) have to look at the big picture. Gavin’s quality of life is petty low. This medication is his best (and only) chance to make the voices stop. For those sitting there thinking, “how could you use such a medication on your child?”. The real questions is “how could we NOT use this medication”. Your not in my shoes. I sit helplessly by watching Gavin decompensate. As a parent, it kills me that he has to question EVERY voice he hears or EVERY person he sees because he doesn’t know if anything is real or not. Dr. R has earned our trust over the past 5 or 6 years. 80% of people with a “schizo” disorder respond well to the medication and it really helps them. The other 20% derive no benefit from it but 10% of that 20% don’t respond to any medications. Does that make sense? We will have to be VERY diligent with the Clozapine, there’s no question about that. However, if this can help to improve his life then it’s worth the increased responsibility.

We made arrangements for the weekly blood work today. Dr. R is coordinating with the pharmacy to navigate all the “red tape”. As soon as everything is arranged then we will have to get the first blood drawl done to establish a baseline. Then we will start the medication and slowly bring him down off the Zyprexa in order to avoid last years complications.

As a special needs parent you never know if your making the “right” decision. You have to trust that you are making the “best” decision possible. It’s a unfair position to be in but it goes along with the territory.

 

Please pray that this brings Gavin some much needed relief and well deserved “peace and quiet”, literally.

 

-lost and tired

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rjones22

use the meds you and your doctors see fit. i hope the best for gavin and and your other children. what a full plate you and lizzie have. try what you have to try. i would

Julie Fletcher

You do what you have to. That's for everything in life. No one can tell you how and to hell with anyone that tries to tell you how: to live, love, parent.

Ann

I know the Risperidone was a hard decision to make for us…and honestly I think it makes it worse, makes us doubt ourselves and our doctors more than we should because of the shame that people try to dump on parents for giving a child medication, especially anything psych-related. And now sometimes I feel guilty for stalling so much, when it improved his quality of life and his ability to learn. It's helping to level the playing field, even if only a little bit. Good luck. (Oh and don't you wish you had a dollar for everyone who had a better idea than medication?)

Tam

Wow, I guess it's very good he's been doing better with needles lately, I hope you're able to manage the blood draws that often. If the med helps with the hallucinations, though, I'm sure it will make everything else a little better. I know my autistic symptoms rise exponentially with my stress levels…

Lost and Tired

Thank you for sharing that because that really helps people understand better. Your comments are always so insightful 🙂

Nikky

First off, I can say (and you and Lizze both know where I stand) SCREW ANYONE who says your making a "bad" decision. No one, save for you, Lizzie or any of the many Drs (minus the quack who screwed Lizzie up further ala meds) who have and are working tirelessly to help you find a "norm" for Gavin are qualified (if the term even applies) to decide what is the right or wrong choice for your family.

I think the questions that Onyx Panthyr brought up are good questions and I will be interested to see how he does as well.

You do what YOU as a family need to do, for your well being let alone Gavin's. I wish I were closer so that I could help in some way other then just saying "I'm here for you" – while I know it means alot to you both, it sounds so hallow 🙁 At any rate… I'm only a text or phone call away (seeing as I always call at bad times 😉 ) As a family, and seperately you all are never far from my thoughts!

Lost and Tired

Well Thanks Nikky. Have your people call my people and we'll schedule a phone call around what ever the crisis of the day is :0

In all seriousness I really appreciate that 🙂

Nikky

😀 I'll get right on that… although I don't think Scarlett knows how to dial properly yet 😉 (she just knows how to lock phones to emergency calls only :-/

Onyx Panthyr

I'm not sure of the appropriate way to word this so please don't take offense; I'm just trying to understand better and learn. I know there is no "normal."

If the new medication makes the voices and hallucinations stop, will that mean that Gavin will return to a more "normal/regular" state in that you'll be able to make progress with his development? From reading your blog, my perception is that Gavin's psychosis seems to interfere with a lot of the progress you try to make with him (and with Elliot and Emmett also). Do you think the Clozapine will help you address Gavin's manipulation issues as well? You've said Gavin has trouble telling you what he needs or is feeling; do you think with his head clearer, he'll be able to do so better?

I guess what I'm wondering is if many of Gavin's other issues stem from the voices and hallucinations that separate him from what we perceive as reality. And if the issues don't stem from the voices and hallucinations directly, how much of his overall condition is exasperated because of them. I just can't imagine going through life not knowing if things I hear or see or actually real… 🙁

I hope that made sense?

I pray the new medication will help make things easier for all of you.

Don't listen to any criticisms you might get for deciding on this drug. You've tried everything else and done your research; if you think this will help, do it. You're doing the best you can which is way more than many people care to do. Throughout all of this, you have managed to keep your family fed, sheltered, and most importantly, together.

Lost and Tired

No offense taken. That's actually a really good question. The answer is that I just don't know. MANY of Gavin's issues are Autism related. The manipulation may be something as innocent as not knowing another way to get what he wants. It could also be coming from a darker place as well.

I guess you could think about it like this. What if you couldn't tell if the person seeing or talking to is real? What if you were seeing and hearing things that terrified you but aren't real. To you they are VERY real but only to you. Now imagine you have a developmental disability that prevents you from processing the world "typically" already.
So I guess if we can remove "stressers" then maybe his anxiety will lessen and his overall demeanor should improve, right?

Does that make sense? That's how I choosing to look at. Anything is progress and any improvement in his life will be seem as a positive thing.

Thanks for asking the question because that was really a good question. Thank you for your continued support.. 🙂

Onyx Panthyr

Thanks for the answer. 🙂 Hoping for the best that can be done.

Niksmom

I am so very sorry for the challenges your son, and your family, face with his schizoaffective disorder. I wish you well and I hoe the medication, as scary as it sounds, proves to be the thing which will help Gavin. There is nothing more painful than watching your child struggle and not knowing if or how to fix it. Sending prayers and good thoughts your way.

Lost and Tired

Thank you very much for not judging and instead being kind and supportive. 🙂

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