Update

Feeling pretty down today... so physically and emotionally drained. Just... tired. Tired of all of it. Tired of trying to deal with all of these difficult behaviors. Tired of doing all of this diet and supplement stuff. Tired of worrying and wondering if I'm doing the right thing. Tired of having endless conversations about the same thing over and over again. Tired of feeling like I am constantly trying to talk my daughter off of a ledge. Tired of hearing little "jokes" and funny comments and just comments in general about my daughter (no one means any harm... but it can hurt sometimes. Kind of like when my mom used to say, "I can say that about my kids, but no one else had better EVER say anything like that!"). Tired of the looks I get sometimes and the way I KNOW we are being judged sometimes about our parenting and our daughter's behavior. Tired of hearing people speak in frustrated tones to my daughter. Tired of spending all of this money that we really can't afford to spend on all of this stuff. Tired of having to talk to the school and teachers so much about all of this. Tired of feeling resentful that WE are the ones going through this. It is all just... exhausting, in every way.  And I really don't get any breaks. Everyone tries to help... my husband does the best he can, our parents do the best they can... but when it comes down to it, I am the primary caregiver of my children... I am the one who is with them 12 hours a day.  This is my choice, and honestly, it's a darn good thing I have made this choice, because I'm not sure if anyone else could do it. Hell, some days even I can barely do it. Often I'm just hanging on by a thread. Not to mention that Olivia won't go with just anyone, at any time... she often has a VERY hard time separating from me. Her diet and supplements are complicated, which adds more to the mix of difficulty. I feel like I need a week to myself, by myself. OK, maybe a couple of days... just to relax, read, and sleep. I can't even remember the last time I had that. And I'm wearing down...

BUT... nothing I can really do about it. Sometimes I laugh when people say, "God doesn't give you more than you can handle," or "God chooses special people to parent special children," blah blah blah... nothing special about me, nor would there be about you if it were you going through this. You do it because you HAVE to. This is your CHILD. Your whole world. The love of your life. This baby that you prayed for and waited for. You HAVE to get out of bed every morning and do the best you can. So I do.

So now that THAT is out of the way, I have to say that I am really SO proud of my girl. She is being such a trooper with taking all of these supplements. Here is what she is taking as of today:

Morning: 2 fish oil chewable liquid capsules, 1 opened capsule of Sacchromyces Boulardii in a teaspoon of applesauce, and 1 tsp of Hyoscyamus homeopathic remedy. Afternoon: 1 tsp. of trace minerals mixed with some juice, green foods antioxidant chewables, and today we just added 1 capsule of Lithium Orotate (this is the mineral lithium, NOT the medication). I tried opening the capsule and giving it with applesauce, but that did NOT go well, so my big girl actually swallowed a whole capsule in a spoonful of applesauce! What a little trooper! Evening: Calcium chewables, multi-vitamin chewables, 2 more fish oil capsules, 1 more capsule of Sacchromyces Boulardii, (we are working up to 3 a day) 1 tsp. Hyoscyamus, and about 3.5 mg. of melatonin before bed.

GFCF diet is going well, but limiting sugars and carbohydrates is NOT going to be easy. I have a hard enough time with the GFCF diet... I don't know how I'm supposed to tell my sweet girl that she can't have some of her favorite fruits or treats. Seriously. It's just not freakin fair. I kinda sorta want the doctor to prescribe her an anti-fungal to knock out the yeast, and then try to keep it at bay with the higher doses of Sacchromyces Boulardii and ease into this kind of diet a little slower. But we shall see.

So even though I'm struggling, and preschool drop-off today was especially difficult and emotional... Olivia has been doing really well at school. And this is what is so hard for me to understand: she can have several good days... and then something happens and she has a difficult day or two. Sometimes there are triggers, sometimes there are not. But it's confusing because you would think today would have been a bad day, as she had a VERY hard time at drop-off... (major meltdown, couldn't really calm her, distract her, or redirect her... I ended up having to leave her, and watched one of her teachers carry her down the hall kicking and screaming... heart-wrenching and embarrassing, to say the least) but once that was over, she had a good day at school. And sometimes she has bad days when she goes to school in a completely normal, good mood. So I just don't get it. So much I don't understand. While there are explanations for some things... impulsivity, sensory processing issues, anxiety... there are several things that just don't have a rhyme or reason to them. One big puzzle that we are hopefully figuring out, piece by piece.

Biomed and homeopathy

Here we go...

*Continue GFCF diet

*Limit refined carbs and sugars

*Continue 4 fish oil capsules per day, and also try to get 1 tsp. of olive oil in per day or eat olives

*Continue 3 mg. melatonin at bedtime for now

*Stop mixed probiotics and begin Saccharomyces boulardii- start with 1 capsule per day and work up to 3

*Begin Hyoscyamus homeopathic remedy- dissolve 2 pills in 1/2 cup water, give 1 tsp. in morning and 1 tsp. at bedtime

*After a few days on homeopathic remedy, begin trace minerals- 1 tsp. during the day

*After three days of trace minerals, begin lithium mineral supplement- 5 mg. per day

*Will also need to start an antioxidant soon and B-complex in the future

*Retesting urine for possible infection, and also doing an ASO Titer to check for Strep antibodies (I asked her to please rule out P.A.N.D.A.S.)

So... this is where we begin! Wish us luck. Pray for us as parents, that we can be strong, kind, understanding, and most of all... patient. Pray for our sweet girl that she can feel good about herself, be happy, and stay calm.

DAN doctor follow-up

OK, so I have been processing the enormous amount of information I received on Thursday regarding all of Olivia's test results. It seems the biggest thing screaming at the doctor is a yeast problem. She said her stool analysis came back pretty good, but the Organic Acids test is showing a pretty big fungal imbalance, most likely in the gut (though I have heard it can be elsewhere, like the brain... ugh). She is also having trouble metabolizing fatty acids, as well as digesting and absorbing protein. She has high ammonia markers, likely due to her not breaking down proteins well. She had a mild reaction to milk, and needs to stay away from it. We will stay GFCF for now, as the doctor said that if she has not had gluten in her diet, the test may not show a reaction to it, so we're  not going to mess with it at the moment. There is evidence of chemical and heavy metal exposure, particularly to xylene, aluminum, and silver, (it was explained to me that we are all exposed to so many of these things, but the difference is that Olivia's body is not sulfating or detoxing the way that it should be) and she tested low in trace minerals and very low in lithium.

It's amazing to me what all of these tests can show us. The treatment plan involves killing the yeast, and taking several supplements and homeopathic remedies. We should make additional dietary changes as well, mainly limiting intake of refined sugar and carbohydrates (feeds the yeast). It is my understanding that alot of what was reported above can happen as a "domino effect" from yeast overgrowth. So... a lot of work to do on the health-front.

Personally, I have really been struggling emotionally. Seeing your child hurt or struggling... I don't know if there's anything that could hurt a mother more. She's had a couple of rough days at school, one in particular. But what everyone (including myself and her teachers) needs to remember, is that she has ALOT of good days, some VERY good. There was a situation last week that was handled badly, in my opinion, and to say it broke my heart into pieces... well, that's an understatement. While I can understand the teacher's frustration, (believe me, I live with my daughter and know how hard it can be, and I've also been on the other side of this as a teacher) I believe her words and actions were the result of just that- a frustrated teacher who did not think things through, nor check with her supervisor on what she was threatening (to no longer allow my daughter into her afternoon enrichment class on Thursdays). I am very forgiving of how this situation was handled, as this school has been very good to our family, I just pray that nothing like this happens again. The whole team will be sitting down together after Thanksgiving (us, her teachers, the director, her BSC- behavioral specialist- and the county director of the agency providing services) to come up with a behavior plan that takes into account the problem behaviors at school AND my daughter's diagnoses. I just think a big part of the problem is that the teachers just have no idea how to deal with some of these situations (through no fault of their own). There needs to be some training on some of these increasingly common disorders, because believe me, my daughter is not the only one struggling at this school, and she certainly will not be the last to come through their doors, unfortunately. It is these kids- the very high-functioning ones who don't qualify or belong in a special-needs preschool- that so often get lost because the teachers are not trained to deal with any kind of special need. Now, she may in fact need a TSS at school, and that's fine... as they really just aren't equipped to deal with some of this stuff, like they hopefully will be when she attends public school kindergarten next year (I think I just had a panic attack). I was just REALLY hoping she could do this. And I would like to believe that she CAN, with some modifications. I just don't know if the school can provide the modifications without a TSS. The problem is it's not a quick process. We're ahead of the game because we already have an agency and BSC involved, but we still need another eval to prove medical necessity, then there's a county meeting to determine whether they will approve services in school, or not. I also just heard through the grapevine that it is very likely that they are doing away with services for ADHD and the like, and she needs to have an autism spectrum diagnosis in order to qualify come this spring. So... I don't know what's going to happen there. It is very frustrating because when you put her three diagnoses together, (ADHD, Anxiety Disorder, and Sensory Processing Disorder) it often can appear that she is on the spectrum. And if I'm being 100% honest here, I am not convinced yet that she does not have Asperger's. We shall see how things transpire over the next several years, I suppose. Either way, that is not the diagnosis that she has, even though SO MANY of the behaviors are the same. We still need help. But it may be taken away. And that's bullshit. But... it is what it is.

Yesterday my babe had her preschool Thanksgiving performance. My usually happy, upbeat little girl who absolutely LOVES to perform had a pretty bad day. She had practiced and practiced her lines and songs and she was SO ready... but her day got completely thrown-off by some relatively normal occurrences... it's just that these kinds of occurrences are anything but normal for Olivia. She had been fixating on the fact that Mommy forgot to send something last week with her to share for Letter H week. I don't know how I missed this announcement or lost track of it in my head, (could have something to do with making her special homemade hot chocolate that morning since someone was bringing in hot chocolate, or gathering her special ham and cheese since someone else was bringing ham and cheese, or maybe just my emotional meltdown that had happened over the previous two days) but it didn't matter- she would not let it go. So we made sure to take something on Tuesday and I asked her teacher if it was okay if she shared something, she said yes, that was that. Well, with all of the craziness of the Thanksgiving party and play, the teacher forgot. Totally expected, but of course Olivia didn't remind her, and when she realized she wasn't going to be able to do so, she was pretty upset, which came out DURING her play, when something else happened to throw her off. She was fidgeting around on stage, as she does, and stood on her drum and ended up breaking/bending it. I should have known better and gone right up there and fixed it immediately, but I didn't... and she came off the stage and just started to melt down. After that it was pretty much over. She completely missed her turn to say her lines and she came off the stage and cried a couple of other times. It was just heartbreaking to watch and there was nothing I could do about it. That's not my girl! She LOVES to be a star, and was SO READY. But when things go awry or not as expected, she just can't handle it. I am still crying about it every time I think about it, as I am about what happened last week.

I was reading something the other day about parenting a child with special needs... something about allowing yourself to grieve for the child you thought you would have, etc. and then beginning to accept her for who she is. While I understand and appreciate the comment, something about that statement doesn't sit well with me, or perhaps it just doesn't apply to the type of special needs Olivia has. She is EVERYTHING I thought she would be, and MORE. Way, way more (sometimes too much more- LOL)! She is not perfect... but who is? She is not a "typical child," that's for sure. But she is SO MUCH MORE than typical, and because of that, she gives me even more than a typical child would. Does that make sense? She is SO PASSIONATE, so full of energy, so full of life, and has more love in her little body than you can imagine. It certainly isn't always easy being her parent, but I feel like I am rewarded so much more. Does it make me sad that she can't sit nicely for a tea party and behave like a little lady? Not really. I really don't care. Maybe occasionally it bothers me a little that she's not a typical girly-girl, sweet little lady... but only when I compare her to others. When it comes down to it, there's absolutely nothing missing... there's nothing I have lost or that I am grieving... there's just MORE. And we just need to keep working to channel properly what's "more" about her. And that is not reason to grieve... that is reason to celebrate!!

ADHD Awareness Week

A poem by Brandy Nicole Head, posted on ADHD Awareness Week's Facebook Page...

He's bouncin' off walls, a super ball gone insane,
He runs through your world like an off-rail freight train,
Interruptions are constant, tantrums galore,
When it's time to do homework, he's gone, out the door.
The drama is constant, oh his foot fell asleep,
He moans and he wails, the theatrics run deep,
School is a nightmare, the teachers are lost,
If they only could see, he is

 worth the cost.

He is brighter than most, as most kids are,
And with patience and love, I know he'll go far,
But what I must take from well meaning friends
Don't let him do that. Oh these rules that he bends.

You're not a good parent. Your child's really rude.
His temper's Outrageous. He has hands in his food.
He hears this and wonders, just what's wrong with me?
I tell him, You're special, you have A.D.H.D.

Now A.D.H.D. is a gift from above,
It teaches us grown-ups how to strengthen our love.
It helps to teach your teachers, no two kids are the same.
You have awesome energy that could bring you great fame.

You don't need much sleep, you never wear down.
You're silly and funny, when you act like a clown.
You've felt lots of pain from what people have said,
But you pray for those people when you go to bed.

So you try every day to make a fresh start,
For God gifted you with an extra big heart.
As I look at my child, he sees through my soul,
My heart feels like busting, as I realize my goal.

I know this boy like no one else could,
He's a blessing to me, he's strong and he's good.
So I'll love him and guide him through the worst of the worst,
And he'll make a great man (if I don't kill him first).

I'm kidding of course 'cause I know what's to be,
When I look in his eyes, I see a reflection of me.

Two weeks

Two weeks since I posted... really nothing new. LOTS of ups and downs over the last two weeks, good days and bad... with no real rhyme or reason that anyone has been able to figure out. I'm doing a sticker chart with my daughter for good days at school... i.e. no leaving the classroom without permission, good listening during circle time, etc. I know she's been struggling at times with impulse-control and a couple of times with (kind of extreme) emotional reactions to having her feelings hurt and/or disappointment. Her BSC (behavioral specialist consultant) has visited her classroom twice, and both times was very pleased overall with how she performed. I believe she has offered some thoughts and suggestions to her teachers, as has her Occupational Therapist. I am contacting the Intermediate Unit to see what she may qualify for in school as far as OT, etc. is concerned. Her BSC feels that the classroom itself can be pretty overstimulating for her, and this is a very different classroom than she has been used to over the last two years. For one, the class size is bigger... she has never been with more than 10 children total, with a 5:1 ratio. This year there are 14 students at a 7:1 ratio, and from what I've seen, there are some very active kiddos in there, (not just mine!) so the teachers really do have their hands full. I will say that the lead teacher is SUCH a dear... so, so sweet, and the assistant teacher is nothing short of FABULOUS, especially with my daughter. You know how some people just have a gift with certain kids? Well, she's one of them. She has this way of calming her when she's upset... taking her out into the hallway and helping her with deep breathing and thinking of the things that make our hearts happy. :) The classroom itself, however... I'm just not sure about. It doesn't seem QUITE as structured as I've seen in previous years, and that's just the style of the teacher. I'm not sure how well my daughter "fits" with that. But I keep telling myself that over the years, there are going to be LOTS of different kinds of teachers, some that she will fit well with, and some that she won't. In fairness, I haven't observed a class, I'm just going by what I see initially and what the teacher tells me about how things run- i.e. the kids are kind of free to come and go to the restroom (across the hall... another difference, as restrooms were inside classrooms in the other 2 classes) and get a drink from the fountain, etc. Between ADHD and SPD, with lots of distractions between the classroom and the restroom- i.e. there are musical instruments stored in a room next to the restroom...or at least there were last week when her BSC was there... well... my daughter LOVES music, and if she sees those sitting there... um, what do you THINK she's going to do??? LOL. You have to know my kid. And I think that bothers the teachers, but seriously... I'm sure it takes EVERYTHING she has to restrain herself from playing with the instruments, from not touching things in the hallway, etc. Snacks are within plain sight/reach, and one thing I've learned about my daughter- if you don't want her to touch something, it had better be out of sight/reach!! So yes... my daughter is tough to manage, but I do feel there could be simple changes in the classroom that MIGHT help. Only so much you can do, though. I've been on the other side of this as a teacher, and it's TOUGH and it's frustrating. And I LIVE with my daughter... so I KNOW how hard it can be with her, so I'm CERTAINLY not placing blame on ANYONE... it just is what it is, you know? We LOVE this school, and it has been such a big part of our lives the last 2 years, that I wouldn't dream of leaving unless it were really necessary. It's hard to hear from a teacher, though, that often times it's as if she almost needs "one on one." That forms a picture in my mind of her needing special ed. services and an aide in public school next year. Which is fine... but... do you know what I mean? I know there could be worse things... you just worry so much about EVERYTHING as a parent. You think about the social stigma and how are the kids going to treat my babe if she's "different." All I want is for her to be mainstreamed and be able to function like the other kids... be able to maintain good friendships, listen to her teachers at school, and succeed. Maybe that's alot to ask and hope for, but that's what I want. I hope and pray we get there.

We've been struggling a bit at home, too. A lot of defiance, some physical aggression when she's angry, and definitely verbal aggression. I think the hardest thing for us is how she is with her little brother... she is just SO in-his-face and touching him all the time... most often it's not malicious or intentional, but because she's so rough and so "on top of him," accidents happen. The other day she was hugging on him and they fell over, and apparently his head just missed the concrete outside. So we get scared that he's going to get hurt... her, too.

If you are a prayerful person, I think the prayers we could use most right now are for us as parents. Pray for my husband and I to be the kind of parents our daughter needs. Pray for patience, understanding, and guidance on how to best take care of her and to help her become the best little girl she can be! :)

DAN doctor follow-up is now scheduled for Nov. 8. My kiddos did not have school yesterday, and I would not have been able to focus on a 1-hour phone call with the doctor. This is important stuff, and the next appt. I could get in person or over the phone is Nov. 8... so again, we wait... but that's ok. Slowly but surely, we'll figure this out.

New blog name?

I think the word "quest" sounds dumb. Like way too over-dramatic. Journey, maybe? Though the definition for quest is as follows: A long or arduous search for something. So... long...? I hope not, but maybe. Arduous? Yep. I don't know, quest sounds silly to me today. Like some Dungeons and Dragons thing, or a space voyage, or something. Thoughts, opinions, ideas?

Tough couple of days :(

So my sweet girl has had two pretty tough days at school. Lots of impulse-control issues. Trouble listening and paying attention. Seeing some of the same stuff at home, along with some mean outbursts and just a general, overall kind of bad mood. I'm not sure what's going on. I know it's going to take some time for the gluten and casein to get out of her system... but like my husband said, we can't blame gluten and casein every time she has bad behavior. Or can we? We don't know. I also had to take her off of her supplements until we have some more blood work done tomorrow... she hasn't had her DHA, probiotic, or multi-vitamin since Friday... so I'm wondering if that is contributing to this? I could just cry, because she was doing so well. The first couple of weeks of school were GREAT, and after talking with the teacher a week ago, who told me that she hadn't seen any indication in the classroom of our daughter's diagnoses, I was just so thrilled. That all changed on Tuesday, when her teacher asked to speak with me after school. :( I TRULY believe this... and I need to try harder to REMEMBER this when times are tough... but IT'S NOT HER FAULT. I know in my heart of hearts that it's not her fault. In the words of Dr. Ross Greene, "If kids COULD do well they WOULD do well. In other words, if the kid had the skills to exhibit adaptive behavior, he wouldn’t be exhibiting challenging behavior. That’s because doing well is always preferable to not doing well." Our daughter has truly shown me this, time and again, so I believe it. I just need to always remember it.