Gage and Quinn had dental appointments today. It was rescheduled for today when I didn’t want to go out on a snow day north of Atlanta on one of worst parts of the highway that circles our fine city. No.

So anyway, the appointment. Gage and Quinn have been seeing this dentist each since they were three. Dr. Teddy, as we affectionately call him, is the only special needs dentist we know. He just knows how to talk to kids with differences and he thinks about pre-pulling teeth antibiotics for post transplant kids, he also has privileges at the local Children’s hospital to perform dental procedures on kids who are under anesthesia for other procedures.

He’s pretty old but still kicking it and we’ll see him until he quits. And that will be a sad day for many a special needs parents and their kids. Take into consideration that he’s not passed on his skill to another dentist and we’re in sad shape in the city.

Gage is tired of poking and prodding. He just is. Unfortunately because of the nature of Gage’s shut down response to life over the last two years he’s not been into addressing it in any huge way. Snippets of  processing the information and sharing it but not much. Not enough for us to use therapeutically.

So last night when I reminded Gage about the dentist appointment this conversation took place…

Gage: “I don’t want to go.”

Me: “I know hon, but we have to take care of our teeth…I want you to keep your teeth!”

Gage: “I hate it though, he makes me choke!”

Me: “What makes you choke? Because we can talk to Dr. Teddy and I bet he will try to make it better for you.”

Gage: “The water squirt thingy makes me choke because it goes straight in my throat like this (makes gurgle) and I don’t like that sucker thing either, I don’t like the way it feels.”

Me: “So how about this? How about I write those things down and give to him as a reminder AND we talk to him before you you even sit in the chair and see if we can come up with a solution with him? What about that?”

Gage: “Okay.”

So I made Quinnlin go first (she’s got no problem with Dr. Teddy) because Gage asked and to give him a little more time to talk to me if he wanted. I pointed out the notes I wrote on Gage, said he’d had a recent hospitalization (pointed to my head and twirled my finger). When it was Gage’s turn I put Quinnlin in the waiting room and brought him…

Me: “Dr. Teddy, before Gage sits down he wanted to make sure I talked to you about a couple of things. Okay? He’s really stressed out about this appointment and he told me it is because he chokes when you spray water in his mouth and he asked if you can warn him and give him time to close his throat. And also, he’d rather spit then have you use the sucker thingy.”

Gage: “Yeah. (Gage then demonstrates how he closes his throat) I don’t like it! I makes me choke and I don’t like it at all!”

Dr. T: “Oh, I’m sorry about that and I am so glad you told your mom and that you are telling me, because of course!  I would be HAPPY to tell you about the water spray and vacuum and in fact, why don’t we see how LITTLE water we can use and how LITTLE we can use the vacuum! Would that be okay?”

Gage: “Okay.”

Then I have another conversation to Gage to reiterate that he has to use his words when he’s uncomfortable or needs a break and Dr. Teddy will listen to him. You know what? It wasn’t a horrible appointment. Gage did great. Said he didn’t choke once but didn’t want to admit it was okay. Said something about still not liking going to the dentist.

Gage and Quinn then went to pick out surprises from the vending machine (by tokens) and Dr. Teddy thanked me for how I handled the situation and said something about what a good mom I was to Gage and Quinn. He said how he was always so impressed with how I am helping the kids by really teaching them  how to work with doctors and that through everything we’ve been through he was always so impressed with my mothering.

And then I started crying.

I thanked him for saying something, he handed me a tissue and I left with the kids. Told Gage all afternoon how proud I was of how he TALKED and USED HIS WORDS (for crying out loud) to let me help him with his appointment. I said, “I think it worked out quite well, don’t you?

In perfect Gage form he said, “Yeah, but I wouldn’t say it like that!”

I’m hoping today he found a little bit of his voice.

If you saw Gage playing on a playground with Laura you’d believe he was “normal.” He runs and jumps and talks and he smiles (now anyway).

It’s from the inside or the inner circle where you know something is off, not normal (by society’s standards). At age 11 he can’t really manage anything on his own, not relationships, home work requirements, reports, simple worksheets, nothing. He has to have one-on-one help for everything in his life both school work and personal. He isn’t able to take responsibility for anything really as we have to tell him to do everything.

Gage is managed like you would not believe. He is walked through everything in his life. I want him to be independent. I pray for his independence. I work everyday towards his future independence.

But I wonder if that is fight I won’t win because it’s not possible.

I wonder if Gage lacks something that he needs in order to be completely independent. For sure he is an independent thinker on some of the things that interest him. But those are not really responsibilities like school, home work or life skills.

It might not be a proper question to ask right now at this time in his life. He’s newly medicated for symptoms that were holding him back, he’s in therapy that might work a little bit better now, and he’s working better at school. So who knows?

Maybe all boys his age (his is adjusted because of delays so he is a year behind) need what Gage does but I doubt it. We can’t just hand him a worksheet from school and tell him to do it. We have to sit with him, encourage him, plan around a mini-meltdown (two today sent him crying to his room), then we have to hold our tongue when he ignores, is disrespectful (ignoring this even is part of the behavior plan for now) or does something irritating (which is often, ohlemmetellyou).

But he has a light somehow,  remarkably so, because for what he has been through you would think it would be dark forever. Sometimes you can even see the light. Can that light grow into independence?

Only time (and love, medication, therapy, a group of teachers, patience) will tell.

My name is Quinnlin. I am good at multiplication.

It is hard for me to look for things far away. If things are moving I may miss them because it takes me a while to find them.

Sometimes outside I play with my friends and if they get too far away I can’t find them. When I’m outside I need to know where things are like steps or signs or things I might bump into or trip over.

I use a marker to keep my place when I read. It helps me if words or math problems on my paper are more spread out so I can find them easier.

I have an eye condition called ocular motor apraxia. This means that sometimes I want my eyes to move, but they won’t. This makes is harder for me to find words on the board, or a problem on a math paper, or a word on a page in my reading book. It helps me sometimes to get closer to the board. You can help me by telling me where things are: at the top of the page, in the middle of the board, under the picture.

Sometimes I turn my eyes or my head to make it easier to see something. When I take a test, I mark my answers on the test. I don’t bubble my answers on another sheet.

I have an IEP*. That is a plan that will tell you a lot about me. Please read my IEP, especially the first page and the page called Student Supports.

Thank you,

Quinnlin

*Individualized Education Plan

This letter was written by Quinnlin and her vision therapist (who consults on Quinn’s vision needs with her teachers). I have never seen this done before. This is the vision teacher’s recommendation and I think good for all kids to have for their new teachers in a new school year. We may or may not modify it before the next school year starts.

Often times when I am joking about the ridiculousness of my life Dawn tells me (sarcastically, cause she’s good like that) I should just do a gratitude list, she says that activity will help me look at the world differently, peacefully even. Well, Dawn, this one’s for you.

I’m glad that a kid didn’t throw up their anti-rejection meds today.

I’m glad I didn’t have to hold both my kids down for lab draws today.

I’m stoked that neither one of my kids said they wanted to kill themselves or die.

The school hasn’t called me in over two weeks because one of my children were doing something unbelievably bad.

I didn’t say kidney failure the whole weekend relating to any kidneys in our house.

Children’s Hospital is billing Medicare for $50,000 in medical expenses not paid by our insurance for Quinn.

Gage’s twice-a-week tutor (who came out of retirement) is picking up Gage from school today and has agreed to go to his IEP annual meeting with us on Friday.

Gage only has 3 appointments for mental health, one for medical health, and two for tutoring this week. Quinn only has two!

So much has happened today…

2 conference calls with clients

3 calls regarding client work

2 calls with doctor who treated Gage

2 calls with nurse at hospital about discharge, regarding paperwork needed to get him back in school

2 calls with school about his return and separately, updating his IEP – meeting scheduled today for that.

1 call to ped to get Quinn in this afternoon.

1 call to my BFF for Q duty.

1 call to my mom to relieve BFF while I pick up Gage.

2 calls to Julian out of town

But Gage is home and doc has released him to return to school.

1 PB&J (gober) sandwich and half a jar from a spoon.

1 happy-to-be-home boy

1 happy sister

1 happy dog

28 blog posts in my head about all of this

1 blog post about parents who are about excluding rather than including, unlike Gage’s BFF Laura’s mom, who not only allows her daughter to have a friendship with my son, but often encourages it.

More later.

I had two good visits with Gage; one yesterday and one today. This is what we know:

- He was interactive with me. Both days we did nothing that we wouldn’t do with him living on the outside; we read a book, did a small puzzle, played a card game, played with a magnet board and read a couple of cards and notes together.

- He is on “One-to-One” orders right now and has been since he arrived on Wednesday. He said he can’t leave the unit or go to the gym or outside because of the order. The order includes 24 hours a day. So someone watches him sleep, too. He found it hard to sleep while someone was staring at him. The weekend person said she is going to give the doctor a good report for the weekend. He’s been compliant, participating and calm.

- Gage looked shaky yesterday but today I didn’t notice any of it. He also SAT with me FOR A WHOLE HOUR, which might not mean much to you folks with kids not living in a mental hospital, but for me? Pretty shocking. I know we were playing , but usually he’d rather take apart a chair than interact for an hour doing anything.

- I am so relieved that he is safe. Those first two days were rough for him, but on the outside? Unbearable. Parents shouldn’t have to hold their child and keep them in a “safe room” and watch them for 24+ hours. I mean we would have but I’m glad I don’t have the memory of it, even if I know it occurred. I’m so thankful there was a place for him. I understand it is the only place in Atlanta.

- I am not sure what Gage remembers from the episode. So far I know he remembers the safe room. Not sure he has a concrete memory of the spiraling out of control, and I hope he doesn’t.

- I get to see him tomorrow for an hour as well so I asked him if he wanted me to bring anything special. He mentioned a specific coloring book of his. He also enjoyed the notes and pictures I brought. His BFF, Laura sent a note and picture and as I left he and his STALKER were going to hang it up in his room.

- Things are very calm in the house without him here. I hope when he comes back some of that calmness remains. We’ve been in the war so long, I forgot what calmness felt like. I so badly want this to be a new beginning for him; a stepping stone to a better life for himself. And one that involves a better life for the other three in the family.

We will know more tomorrow when his doc is back on duty. We might get an idea of when he will be coming home. In the meantime I need to have an IEP meeting with the school so we can talk about reentry. The social worker told me Friday that the average stay is 5-7 days for stabilization. Wednesday will be one week.

If we are going to focus on anything it would be that Gage is out of crisis.

Friday I was able to see Gage. The hospital called me to come in to see a social worker along with Gage late in the day. I met with the social worker first because I needed to address some items that were bugging us about the first day and a half stay for Gage.

1. When we called Thursday night to check on Gage and confirm they gave him his transplant meds no one could really tell us what time they were given. We spoke to 5 people trying to get an answer. There is a difference between the time a med is ORDERED vs. the time a med is GIVEN. And no one could answer that question. Not comforting. Yesterday, I met one of the few people that dispense meds at 9 and 9 and she knew the meds, doses and importance.

2. A month ago I started notebooks that each morning I write a message in to each of the kids. I started it for Gage so I can give him a message about the things I love about him. So each night I write a note and each morning he says, “I saw your note.” And that’s it. One night I forgot to write it and he really did miss it. The second I walked downstairs he said, “Mommy, you didn’t write in my book!” So I know the notes each morning meant a lot to him. So when Gage was checked in we had a quick meeting with the head nurse and he gave us all the details about contact, visiting, phone and fax. I asked him specifically if I could fax Gage notes each morning and he said yes. But I sent two and he didn’t get them when I checked today. Annoying. I know it seems like a little thing, but I want Gage to know that the notes are important to me and it’s important he know that each morning I am still thinking about him even though he is out of sight. I want him to know I am thinking about him.

3. It was annoying that the social worker hadn’t read the file or met Gage. She hadn’t even talked live to anyone before hand to get any back history. I don’t know about you but I’m guessing if you are going to talk to a patient and their parent about how he came to be there and how it is that he can get home, then you had better read the file. But that’s just me.

When I saw Gage in the hallway it wasn’t very dramatic. I immediately put my arm around him, kissed his forehead, noticed two bruises (guessing they got there during the hours of raging) and told him how happy I was to see him. He looked zoned out a bit, but he was up 31 hours straight the day before and so he’d taken an hour nap before I got there.  Or it’s the med and his body’s adjustment. When I was leaving he got upset (presumably because he wasn’t coming with me) and went to his bedroom, where he was crying under his weighted blanket.

He didn’t really participate in the social worker meeting (and I didn’t think he would, so my expectations were low) but we both did tell him that our goal was for him to come home and that in order to do that he needed to participate and learn some coping skills to help him deal with his anger. I told him that I bet he could learn a lot there if he tried and I encouraged him to do so. I told him that I loved him and that I wanted him home.

He said he hated it there. Yeah, figured that sweetie. But then I realize too, that maybe home won’t look so horrible. We have to be better than a mental hospital, right? Yeah, that’s what we think, too.

I held it completely together while I was with him but when I was leaving I was crying. Such is the life of leaving your child behind to deal with their problems in a setting you hope will help. Still though, with the leaving. Suckage.

We can call him and talk to him each night between 8-8:30. Since I saw him I wanted Julian to talk to him so he called and Gage answered yes, no, then said, “I have another call, I have to go. Bye.” Julian called me and asked him if I was calling him. No. I guess they only have 2 phones that work (whatever) but 40 kids, who all probably get calls. Julian called back and the nurse explained that she told Gage that other people needed to make calls. She did tell Julian that Gage had a great evening, was compliant and even participated in group. Stunned.

In a little while I get to go see him. I have a couple of card games to bring, this morning’s note and my love. That is all because they will not let me bring anything else. Nothing that could be a weapon or something that a kid could harm themselves with and so, nothing else.

I am so thankful that Quinn got to spend the night at a friend’s house, so she could just be normal in the midst of all of this with Gage. She watched movies, played and this morning I understand she had pancakes and bacon. My lovely friend Sue is keeping her until after I see Gage today and then we are headed to see one of Quinn’s favorite people; our goddaughter Tess.

I am largely numb today, feeling like our family life is out of control yet I’m keeping it all in check because that’s what moms do. I had the privilege of going through stacks of medical bills/statements and the total owed is nearing $70,000. I know Medicare will pick up most of it, it’s that other $10-$15k I’m worried about but also know it will work out, as we always have to believe.

I’m at work catching up and distracting myself until it is time to go see my boy. The boy with so many challenges that I see it makes me wonder how he is viewing himself and the situation. It is a sad, scary time for all of us as we contemplate the immediate future and the distant one, too.

But that is not new to us. I just always thought it would be his physical health in question. I never imagined that his mental health would be in question. This is exactly what I was talking about when I said it is never-ending. It honestly never ends. But deep down we have to believe it can only get better. Right? Right.

In list form because then I don’t really have to be coherent. I know you understand.

- When I woke up I realized Gage wasn’t in the house and I started to cry then Quinn said, “Mommy!” and I said, “Good morning Quinn!” all excited because she had a performance at school this morning and she deserves for me to be happy about her waking up to perform. Which was extremely adorable, by the way.

- Many people in our Village are offering their love, support and prayers. Along with food and help and wow, again, after having just called on all of that for Quinn’s transplant you still want to help and I’m overwhelmed with love and warmth. Your love surrounds us like a blanket.

- Already working on next steps for Gage’s IEP stuff. One thing I know, until we have a meeting about the recent incidents and without the team having more information (which I am not willing to share here yet)  it is way too early to speculate on where Gage will go to school when we returns. I believe that with proper meds, an adjusted IEP, therapy support increased and more understanding about what is truly going on with Gage, that our school can serve him. But there will obviously be changes to his IEP. But speculation? Not good.

- What do we need? Prayers, love, support, understanding.

- Quinn hurt her foot last night and I thought it was broken, then I thought it wasn’t. Then I was going to take her to the hospital but she had a performance this morning at school and so we said, if you can go to school, great. If it’s too hard to walk, we will take you to for an xray.  She can walk on it, it just “hurts real bad.” But still.

- I have a meeting with the social worker and Gage tomorrow at 2:30. Apparently it was a rough night for him. A safe room, with one-on-one care, which he desperately needed. Today was better, even without sedation, but still bouts of anger/lashing out. However a new med is being started this afternoon, so I’m anxious to hear if that helps him in the short term.

- Julian and I are doing okay. I am joking when he’s upset, he’s joking when I’m upset and so it balances out. We did have one fight about a fax of all things. It lasted about 20 seconds when HE REALIZED I WAS RIGHT. Yeah, he’s great like that.

- I am without a doubt running on pure reserves. Reserves I guess that I’ve stored up since Quinn’s kidney transplant 3 1/2 months ago. Is that enough time to store reserves? Hell no. Which means I’m in negative reserves.

- I spoke with Dawn earlier and it was good because I can make really inappropriate jokes about my son and she can handle it. Not so with Grandma, I’m sure.

- Wow am I glad for my work. Honestly. I’m not just saying that because some clients read my blog either. It makes my life seem normal when I can do my normal things.

- We’ve cried a lot in the last 24 hours. A lot. Some from sadness, some from relief, some for each other, some for our family, but all for Gage. Wanting so deserpately to help him have some peace and happiness. Like the kind of happiness from cereal boxes which sadly always eludes him, no matter how much we try. Sure, he can be happy about a thing or an activity. But true blue happiness? Not seen that for a while. Too long if you ask me. But I’m just his mom.

- The good thing about him being in treatment is that the doc gets to see the worst. One thing his other med doc didn’t. She is very conservative and didn’t always want to act on what we told her about Gage. But this doc? He’s treated kids like Gage and that gives me great comfort.

- Must go, because really, I’m taking my girl to the hospital for an x-ray. BECAUSE MY LIFE IS CRAZY.

All typos and crappy writing must be forgiven today.

If you follow me on twitter and facebook you already know what has happened. For those that don’t, we’ve had to commit Gage to a psych hospital today that serves children.

This has been the hardest day of my life. He’d had, including today, 6 episodes of rage/anger (post below) recently and they’d been escalating. Last night and today at school and well, it was so clear that he needed more help than we’ve been giving him with a team of psychiatrist/psychologists and support and love. We needed more and he needed more.

It was a horrible day that involved us watching our child escalate into a manic-like state that shook us to the core. We are not surprised it has come to this, but we are heartbroken for our son. We watched four people restrain him and we watched him weep while swinging his arms and body to try to leave the little in-take room. The last time I saw him they had him in a safe therapy hold on the floor and the last thing I said was “I love you Gage.” The 2nd to last thing I said was, “If you will calm down we can ease up on the hold, baby.”  The absolute hardest thing I’ve ever done was to drive away from that hospital.

They sedated him after many phone calls and pager calls to the transplant team pharmacologist to make sure of what meds would be safe for his kidney. When we left (4 hours later) they said he was resting. When Julian returned tonight with a bag and his weighted blanket and transplant meds, we heard he was in a “safe room” where he was on one-on-0ne care and very agitated. This very nearly broke my heart, but then I think, I still have a little girl, the sacrificial child a lot of times because of Gage’s highly demanding special needs and my heart has to hold on the breaking for later.

If he can calm down and participate in the semi-real world again, he has a packed day of group and indiv therapy, therapy games, fun activities too. He is in his own room and throughout the night they have checks every 15 min. There are motion sensors at night so he is very, very safe. There are currently 11 kids on the wing between the ages of 4-12.

We cannot see him until Monday (and wed) for visiting time, but we can call him every night and we can call the nurses throughout the day to check on him. We’re comforted that Sally the Cat is with him and providing some comfort to him because I know he is scared. Julian will probably get a short visit with him tomorrow night (exception) because Julian is going out of town on Friday (through wed). Julian is still going out of town because that is a part of this life – moving on. And at $6250 a week for the hospital (not sure what insurance covers, if any) we need to make sure we are both working.

How’s Quinn you ask? Well, she is unfazed as of today, but when I told her that he was having a lot of trouble with his emotions; something in his brain and were trying to help him she said, “Yeah, he gets mad a lot” and then she said, “When he comes back do you think he will like me again?” Which is also heartbreaking in itself.

Obviously, we are terrified, scared and sad for Gage. But we are also relieved. Relieved that this might help him. We’ve already spoken to the doctor and after review of the files and talking with us they are working on his meds. We’re in constant talk with his other doctors so everyone knows everything.

The in-take psychologist started off on a not-so-great start with me because she saw Gage and Julian in the other room (Julian had him in a hold to control him) and she kind of judgmentally said, “I need to teach you all how to therapy hold.” I calmly said that is fine, but she needed to leave her tone and attitude outside of the room we were in and she needed to realize that we were in crisis, having never seen our son in this state and that she needed to be a little more gentle with her instructions with parents, thankyouverymuch.

We had a long in-take interview with her after Gage was in what I assume was some kind of padded room (seriously, see the madness in that!) waiting to see what sedative drugs are safe for him to take. I have to say, as parents, in between bouts of tears between both of us, we did okay. We were able to give her a history, talk about triggers (or lack thereof) and rationally discuss his many issues, diagnoses, possible diagnoses, cycles of sadness and rages. She commented that we were very informed parents.

We know this is the right treatment for right now because we have to believe or we would crumble into a heaping bowl of crazy ourselves.

What about Julian? My husband of nearly 16 years, for which my life would be bleak without? Him? He’s an amazing father and husband and I’m lucky to face this mess of our life with his heart, tears, humor and love.

We are asking for all prayers and good thoughts to God and Jesus and Buddha and the Easter Bunny, the Light and the Universe, or any Higher Power you like for extra love, peace and protection for Gage.

As a parent to sick kids I think an important, even vital part of our relationship as caregiver/patient is for them to see me advocate for them .

There aren’t many times when I’ve lost my temper, but if I do it’s usually for a good reason (at least it is to me and my kids). I can think back to the time that Gage was in so much pain he couldn’t stand, sit, or move his neck (catheter #2) and the surgeons nor his dialysis doctor were addressing my concerns about his pain, the time Quinnlin had 3 ultrasounds for the same test for her transplant evaluation and the last one resulted in her missing a day of school and me a day of work. There are also the many times that our time isn’t counted as valued. An example is when the clinic won’t/can’t order infusion meds until the IV is actually IN the arm – when it makes sense to order the med when we check in instead of the hour or sometimes later than an hour, as such was the case last Thrusday.

I’m fine with the kids seeing me upset when it’s appropriate, in fact, I think it’s a learning tool for them for when they are their own advocates. It’s just the truth, but health care people just don’t see what we see and they can’t know how it feels from our perspective – whatever it is.

If I’m to teach them the regular things about caring for themselves by being an advocate – even an upset one – is part of the package. I want them to grow up to take care of their kidneys, handle their meds, listen to their bodies (hence the E.R. visits when the kids ask to go) and to be inquisitive about what is happening with treatments and tests. The only way I know how to do that is by example.

So today, when I call the patient advocate, I don’t really have to. But I have to. It’s my responsibility to my kids and for other kids. They deserve the best care AND the best customer service that the health care community can offer. Would I rather not? Of course, I have other things to do, just like every other parent on a Monday, but I want to be able to tell Quinn that I am trying to make the impact of her treatment less of an impact on her already impacted life. When we go in next month I want it to be different for her and I want her to know that I did that and she can, too.

The problem with this is that you always feel like you are complaining, which can be quite the reputation to have when you work with people every week. I strive to show respect for the people and frustration for the process. There’s a distinct different. The people who are ordering the meds or putting the IVs in aren’t the ones that make the policies, they are just the facilitators. It’s the hospital policies that are usually in question, or the “way we’ve always done” mentality.

All I want to do is just to change some of the way they’ve always done it and when Gage and Quinn are older I hope they will do the same.