I originally started this blog a few years ago to chronicle Noah's daily struggles with autism. It was a dark time in my life - a time when I felt that things would never get better. It was a time when I felt that all my hopes and dreams for my son and for our family had died. In my efforts to help Noah recover from autism, I began a journey that inadvertently led me to rediscover myself. I learned how to laugh again. How to dream again. How to live again. How to love again.

Autism Schmaustism. He's still our son.

This is a blog celebrating our family. Our kids. Our life.

Wednesday, December 28, 2016

Acceptance and Moving Forward

It's been so long since I posted here. I wasn't even sure that I would remember my password. And, actually, I really haven't planned anything to write out, but I just had this overwhelming urge to post today. Maybe so that I can look back on this post next year and see how far we've come, I'm not sure. But here we are... and here I am....

2016 was a challenge. Not just for our family, but for everyone it seems. I look around and 2016 just seems to be a year of hurt. It was a tough year on so many levels.  A little over a year ago, on December 23, 2015, we were told that my husband most likely had a certain lung condition that gave him only three years to live. We are so fortunate that it was NOT what they thought, but it led us straight into 2016 full of fear and despair.... feelings which continue all the way through today.... and may lead into 2017.

To condense a very long story that's full of grief and misdiagnoses and full on panic attacks (for me), I will say that after a series of misdiagnoses, Sim was finally diagnosed with Stage IV sarcoidosis in his lungs, lymph nodes, and bones towards the end of January and he was also later diagnosed with hereditary hemachromatosis (HH) in June, which has caused Stage IV cirrhosis of his liver.

It's such a fluke that we even came to know of his HH and I won't bore you with the details, but it was truly a blessing because Simeon's ferritin levels were at a toxic rate. Normal levels are around 24-300 and his were 4274. Anything over 1000 causes organ damage, unfortunately, and we have no idea how long his levels were this high.

He immediately began weekly phlebotomies in June, but the iron isn't coming out fast enough, which means organ damage is still occurring.  Right now he has lesions in his liver and we don't know what they are because his liver is so black that there's not a good reading on the MRI or CT scan. His chances of cancer are 200 times greater than the average person, so he'll be monitored closely for the rest of his life and his hepatologist said that a liver transplant is most likely in his future. Fortunately, he doesn't need it now, but his doctor is sure the day will come.

It's been such a tug of war of emotions. We've had so many misdiagnoses... some that were just downright awful... and all of this comes during a year where we had more challenges with the kids than ever before.

Noah (15!!) is actually doing great. He finally qualified for assistance and now has a caregiver. There are two sisters (19 and 21) who split their time with him and he is thriving with the 1:1 attention. He's learning to put on deodorant and he can pull up his shorts now. He's learning how to use a Dynavox. His neurologist wants him weight bearing for 2 hours a day, so with assistance, he's able to use a treadmill for 15 minutes at a time and he walks around the neighborhood with his gait trainer. He just radiates joy and happiness.

Naveen (7) is in 1st grade and is thriving. We are so glad that we made the decision to put him in public school. We still homeschool the others, but Naveen needed the structure and socialization that our little homeschool couldn't provide. The older our other kids get and the more their issues come to light, we realize how very important it is for Naveen to be around neurotypical children.  It's been such a joy to watch him learn and grow and thrive in ways that we were never able to experience before.  Sim and I joke that he'll probably hightail it out here at 18, but we feel confident that he will find his way in the world and we pray that he can escape all of this craziness unscathed. ;)

Puberty hit us hard this past year with Eli (13) and Nandi (12). There are many personal details that I simply can't go into, but this year gave us a glimpse at our future... and it's hard. It's really hard. I've had a difficult time processing a lot of it and had to do a lot of letting go of expectations and dreams. Accepting their challenges and struggles as being something permanent was probably one of the hardest things I've ever had to do. A lot of tears were shed this year, but it was time to accept what was staring at us all along.

Nandi was diagnosed with an Intellectual Disability.  She is clever on so many levels, but her overall functioning and ability to live independently is severely impaired. Her IQ test was quite low and as she gets older, we see the gap between her and her peers increase significantly. We're also seeing the effects of her frontal lobe damage come into the forefront (no pun intended) as she gets older. Personality, mood swings, reasoning, ability to understand cause and effect are all impaired and it's been a challenge to figure out how to navigate around this.

Eli has also had a tough year this year. He was blossomed in so many areas. We finally started medication (after years of trying natural alternatives) and it has helped in so many ways.  He started seeing a therapist (Nandi will, too, in the new year) and three of his therapists strongly believe that Eli has some sort of Fetal Alcohol Syndrome, most likely ARND (Alcohol Related Neurodevelopmental Disorder).  Someone commented here a few years ago that Eli reminded them of their son who has FAS, but I never thought much about it. However, once we looked into it, we realized that he fit nearly all the symptoms. It's something we may never really know for sure, but it gives us an explanation that we've been searching for such a long time.  I feel like I've finally found my tribe... a group of parents who understand exactly what we've been going through for so long.

As for me, well, you can imagine that I didn't handle 2016 very well. I panicked over every blood test, every scan, every doctor's appointment, every cough, every headache, and every ache and pain that Sim had.  I literally cried nonstop for two weeks over an issue we had with one of our kids.  I slept only 2-3 hours a night. I spent hours researching Sim's health issues. I gained 22 pounds in 11 months. (I clearly eat my feelings.). We also discovered mold in our flooring and behind our cabinets in March and had to completely gut our kitchen, rip up all of our flooring and replace all of our bedding and mattresses. Nine months later and we still don't have any flooring in our house and our bottom cabinets are thrown together with a bunch of 2x4's and 4x4's, but I like it. It's simple. And it reminds me of all we've dealt with this year and how far we've come.  It also reminds me of how lucky we are because it could've been worse. Much, much worse.

But as the saying goes, there's beauty in ashes, right? After nearly losing my mind and sinking into depths of depression (September 2016 will officially go down as the worst year of my life), I realized a few things. I realized that I cannot change the inevitable. I cannot change Sim's health. I cannot make his diseases go away. I can't change brain damage. I can't change the choices that affected my children before they came into our lives. I can't make autism go away or frontal lobe damage or ARND. I can't change that the future will bring heartache for our family. I can't change that my parents will get older and die. I can't change that Sim's life expectancy is shorter than others. I can't change that other people will have children who will meet milestones and who will go to college and get married and have careers, while we deal with the very real possibility that three of our children will never live independently.  So the only thing I can do is accept.

It seems that everyone had a buzz word for 2016. If I had to choose a word to end 2016, it'd be Acceptance. It's not be confused with giving up or defeat or hopelessness. It has to with accepting what's real and accepting that no magic pill or curriculum or teaching strategy is going to change what's in front of us. It's accepting that for Sim's sake, our diet has to change. Our future plans are going to look different. It's not letting denial rule our world.

As we go into 2017, I think our new word or words will be "Moving Forward". Because we can't look back. And we can't change the past. So we're marching into 2017 with our heads held high.  I'm going on a retreat for moms who've adopted children with challenges in March. In April, Sim and I are taking one last "Bucket Trip" together to England. It's been 10 1/2 years since I've been and we're both pretty sure it won't happen again.  We're going to explore possible new therapies and therapists for two of our children.  We'll continue with homeschooling and continue to try, but also not blame ourselves if our strategies prove fruitless. We'll continue to volunteer at the Humane Society and watch documentaries and play board games as a family. There will be art lessons and swim lessons and hanging out with the grandparents. But most of all, there will be hope. Because hope can only come after acceptance.  And with acceptance, comes the will to move forward.

May you all have a blessed and wonderful 2017.

Wednesday, June 17, 2015

Long Overdue Update!

Hey y'all! It's been an entire YEAR since I last updated this blog. I can't believe there was once a time where I blogged daily. I think Facebook has ruined me for blogging because it's so easy to just post a quick update here and there.  My blog posts always turn into novels. ;)

A year ago, I posted my educational plans for the kids over the summer. Well, that turned out to be a big wash!  My niece, Hannah, came to stay with us for six weeks over the summer and we decided to can the school and just enjoy our summer break. We had a ton of fun, so it was worth it!

So what's happened in the last year and where are we headed? Here's an update on each of the kids:

1. Noah turned 13 last October. THIRTEEN!! Y'all, I have a teenager! Noah's doing really well. Not a lot of progress, but zero regression, so it's all good.

We stopped doing biomed with Noah 7 years ago, although we continued to do therapies here and there, as our budget allowed. And, if you remember, Noah had a horrible reaction to a chelator that he was on for nearly a year when he was three. It's made us a bit wary about trying biomed again. But once Noah turned 13, something clicked inside me and I found the oomph to try again.

Next month, Noah will start seeing a MAPS (biomed autism) doctor, and we'll start from scratch. The thought of six people having to hold Noah down to take blood terrifies me, but it has to be done. We're also going to test for Lyme, which is something that's been on my radar for a while, but I've always avoided because drawing blood is so traumatic for Noah. However, we recently realized that Lyme is a spirochete and Noah has brain calcifications from a congenital TORCH infection, one of which is also a spirochete and a cousin to Lyme. We don't know which infection Noah had at birth, but it doesn't hurt to rule it out. And if it comes back positive? Well, my brain can't even go there right now...

Noah is also going to see a new neurologist. He hasn't been in years, but we're suspecting that he's having absence seizures, so I'm having to put on my big girl panties and take Noah in. We've had such horrible experiences with doctors in the past, and Noah is the worst patient EVER, but we need to find out what's going on, so off to the Neuro we go.

We're also starting Gemiini with Noah. Have you heard of it? It's the video modelling program that has all of us parents of nonverbal kids in a tizzy. I'm praying it works. I would love to hear Noah's sweet voice.  We're also continuing with RPM, and my yearly goal is for Noah to point completely independently within the next year.

And, finally, we're starting the whole family on the Paleo diet starting August 1st. I've been doing the Whole 30 since May, in preparation of breaking my sugar and froo-froo coffee drinks. I've been trying lots of new recipes and the kids have been really receptive. Except Noah. The stinker. He is a carb junkie through and through.  So we've got our work cut out for us, but we're going to do it. The older he gets, the more I realize that I just have to try harder, you know?

2. Eli will be 12 in September and, poor thing, his life is about to get turned upside down. We are pretty much 100% certain that after all these years that his issues stem from PANDAS.  It's a neuro-psychiatric illness that comes from untreated strep, and he has every single symptom. He could seriously be the poster child.  Eli is even worse with blood draws than Noah, and I'm totally making Sim go with me to this appointment because there's gonna be A LOT of blood. We're testing Eli for PANDAS, along with Lyme, food allergies, and strep. I would love to do the 23andme  genetic test, but these initial tests are going to break us, so that one might have to wait a while.

3. Nandini is 10 and we received some big news on her last Fall.  After talking with her neurologist, we discovered that Nandi's brain cyst is not in her temporal/parietal lobes, but in her FRONTAL LOBE.  Nandi had been home for 7 years at that point and this whole time we thought her cyst was somewhere else. No one ever corrected us. Y'all, frontal lobe damage is some serious stuff and it explains a whole lot. But it's also scary as all get out and I cried in the bathroom for a long time after we found out.  It really affects her ability to empathize with people, understand consequences and cause and effect, and it really, really, really impacts her working memory. As in... she has learned the same math facts over and over since she was 5 and still forgets them after a one week break. As in... it took her 7 months to read her first book and after a week break, she forgot how to read.  As in... she mastered all of her spelling words three separate times and can no longer remember how to spell them.

I'm taking her to the same neurologist that I'm taking Noah to next month and I'm so excited. The doctor just moved to Plano and she has CP herself! Her entire clinic is only for kids with cerebral palsy and she treats the whole child, so I have high hopes that she'll be able to direct us to some sort of cognitive/memory training.  Nandi presents as a child with at TBI, but because it's not a true TBI, she doesn't qualify for a lot of trials and studies. So our fingers are crossed that this neuro will help point us in the right direction.

4. Naveen just turned 6 and has been home for three years. Can you believe it? Where did the time go?  Naveen is doing great. He is the only kid that, so far, is not showing any sort of learning or cognitive delay (fingers crossed), but he's also totally not interested in learning much of anything right now.  haha.  He's a bright light in all of this and I'm so glad that we said, "YES!" when we heard about him.  He still takes medicine for his kidneys and goes for checkups every 6 months, but he's basically in the clear health wise. Hallelujah!  Naveen is a very shy kid, but he had a big breakthrough this week and went to VBS for the first time. Well, we've tried each year and he's cried and cried and I didn't make him go. But this year, I put my foot down. On the first day, I picked him up and he was so happy and said he had such a good day and that he only cried three times. lol

5. Sim  doesn't like me to talk about him because he's a super private person, but he's doing well, too. After a 4 hour RT commute to work each day, he was able to get a job a bit closer and now commutes 1 hour and 15 minutes each way.  He had to switch positions in order to do it and it cut away all of his overtime. Basically a third of his salary. Ouch. But on the plus side, he's home by 4:45 every day and that is nothing short of a miracle. It's totally worth it!!

6. Me.  Well, I had a wake up call last summer. I started having dizzy spells and couldn't remember things. My arms were going numb, and I completely failed the "finger to nose" test.  My doctor asked me to repeat four numbers and I got them all wrong. The skin had started to peel off my fingers and feet and I was losing my balance. I couldn't drive. I was terrified. Do you know what it turned out to be?  STRESS.  I thought the doctor was wrong. I mean, how could stress cause all those symptoms? But I went away for a few days after that and all my symptoms vanished. They returned when I got home.

So I had to make some pretty big decisions - or at least they were big to me. My biggest fear in the entire world is that something's going to happen to me and the kids will be without a mom. Just the thought paralyzes me. And I knew that if things didn't change that it could easily become a reality.  So, I decided to let certain things go.  I stopped stressing over the kids and their school. We still do it, but I stopped telling myself that it was my fault and that I wasn't trying hard enough. I stopped telling myself that I was a failure because I couldn't teach them what they needed to know. I started accepting that there are factors beyond my control when it comes to my children and their brains and their issues. I decided to forgive myself and not put so much pressure on myself.  I decided to take some pressure off me and increased the chores that the kids do and decided to teach them how to cook so they could help me in the kitchen. I let them watch a little more TV than I should so that I can lie down on the couch and rest when I get tired. I made a conscious decision to stop sweating the small stuff. And you know what? It worked.  It's not all sunshine and roses. I still have to remind myself to slow down... a lot. But it's good to know that it's manageable and that it's something I can control myself.

And that's pretty much it. I know I should have included pictures to break up all these words, but maybe next time.

Hopefully, I'll be back in a few weeks to discuss test results and what not.  Thanks to everyone who's emailed over the last year and asked how we're doing. I'm really sorry if I didn't reply. Someone emailed me about FAS and I wish I could remember who it was. There's a really neat story that goes along with that  and maybe I'll share that soon.


Wednesday, June 04, 2014

Our Educational Goals for the Summer

I don’t know if I’ll return to blogging or if this is a one-off post, but what I do know is that I have so many thoughts whirling around in my head and it’s always better if I can just write them and get them all into one place.

We just finished one and a half years of homeschooling.  We're now supposed to have a 7th grader, a 5th grader, a 4th grader, and a Kindergartner, but what we have is, well, I don’t even know  what we have.

I was telling my parents yesterday that I think I pulled the kids out of public school too soon. I pulled them out because they were failing and their self-esteem was suffering and they were emotionally suffering and our family was falling apart. But I pulled them out before their half-term report cards came back, so there’s nothing official on record to show that they were failing. They would have received an F on their report card, but there is no report card. They would have both been held back if they had stayed through the school year, but they didn’t.  Eli had neurological testing showing significant learning disabilities, but we couldn’t afford the testing with Nandi and her school thought her failing was behavior based. In the words of her teacher, “I just don’t think Nandini cares”.   But I wonder what would have happened if we had left them in school. Would they be held back year after year? Would they have been placed in special education? Would some miracle worker have come along and taught them everything they need to know in the exact way they needed to learn it?

Because it’s been a year and a half and, well, despite working with them both for the last year and a half, we haven’t really accomplished anything.  I don’t think I realized the full extent of their LD’s.

Sometimes, I think it’s easier for Noah. I mean, it’s frustrating for him because he has an intact mind stuck in a body that won’t cooperate, but the truth is that strangers and people don’t really expect much of him. He looks like he has autism. And all it takes is one public outing and the flapping and the babbling and the shrieks give him away. If Noah shuts the fridge door, we all cheer and clap and praise him.  He is fully cognitively aware, but we expect so little of him.

It’s different with Nandi and Eli. They can talk and run and play. Eli is our little professor who memorizes movies and can hold full adult conversations with complete strangers. He gravitates towards adults and charms them with his manners. He stays up late to listen to books on CD.  He can remember events that happened when he was three. He can remember what he was wearing and what the atmosphere smelled like, but he can’t even remember how to spell his own name.

He is so creative. His imagination is so vivid that sometimes I wish I could live inside his brain. I imagine it’s full of vivid colors and details. He can take a broken Frisbee and a piece of string and a pipe cleaner and an old garage sale Happy Meal toy and create a fantasy world that will occupy him for hours.

He looks normal. And he talks big. And he can remember where I last put my keys.  And people have high, high expectations of him. But he can’t remember anything with numbers or letters.  He can name every dinosaur, but yesterday, Sim gave him an old Mp3 player, and he can’t remember the name of it. “CP3”, “3BM”, “3pM”, “PC3”.  He doesn’t know how to spell his full name. He can’t remember our address or phone number and the few times he does, he gets the order mixed up. He doesn’t remember to capitalize the “T” in our last name. He reverses some of the letters. He cannot add or subtract up to 10. Or tell time. He can remember where I put my keys, but can never find his shoes.

He is anxious and fearful and temperamental. He’s come a long way, but when he gets overwhelmed he explodes and cries and doesn’t care who it’s in front of. He is too afraid to take any classes, like robotics or a class at the zoo, because he’s scared of other kids his age. He doesn’t like to try new things, but prefers the comfort and cocoon of home. His favorite thing to do is to watch TV or movies where he can escape into a fantasy world, or perhaps, to escape the world that he’s in.

It’s hard because you would never know just by looking at him or talking to him, and I’m so scared for his future.  What kind of future is there for an adult with severe LD’s?  Who looks normal and talks big, but who can’t add or manage money or look at 2 quarters, a dime, a nickel, and three pennies and tell you how much it is?  You can’t even get a job in retail or at a fast food place if you can’t count back change.

I’ve really come to appreciate how the whole brain works and what a miracle it is over this last year and a half.  People are afraid that their kid will grow up to push baskets at Walmart or get a job at McDonald’s… I mean, isn’t that what people say? “You’d better pull up your grades or you’ll be working at McDonald’s for the rest of your life.”  But the truth is you have to really be on top of things to work there.  The other day we drove through and I was mesmerized by the lady who took my money at the drive-thru. She had to pull up my order, take my money, recognize how much it was, enter it in the register, know how much money to give back to me,  get that money, count it back to me, all at the same time that she was taking orders from customers who’d just driven up to the order menu.  She had excellent multi-tasking skills. She was able to do things in a sequential order. She was able to hold strings of information in her head. Things that two of my children can’t do and might never be able to do.

I have no idea what the future holds for our family.

Anyway, the whole thing has me thinking of what to do this summer about our schooling.   Sim and I decided that we’re going to pick a few things that we’re going to work on for each child… things that are important and necessary. And then we asked each child what they want to learn. Here’s what we decided on. By the end of the summer, each child will be able to…

1.  * Print his or her full name, address, phone number, and my cell number.

2.   *Each child will know his or her birthday and write it out. Noah will be be to point all the information out on his letterboard.

y   By the end of the summer, our goal is for Nandi and Eli to both 
   *Add and subtract to 10

2.   *Add numbers and money to 100 using 5’s and 10’s. For example, 25 cents plus 10 cents is?  80 plus 5 is?  40 plus 50 is? 25 cents plus 25 cents is?

3.  *Be able to tell time by the 5 minute mark and recognize a quarter past, half past, and quarter till.

4.   *Eli will read one Magic Tree House book out loud. If he finishes, it will be the first book that he’s ever read.

5.   *Nandi will read to page 30 in her American Girl Felicity book. We promised her three months ago that if she finished it, we would buy her an American Girl doll.  It takes her about 30 minutes to read one page, but it’s the book she wants to read out loud. It will most likely take a full year for her to finish.

Naveen already knows how to write most of his letters and even spell words from site, but he doesn’t yet know what each letter stands for. I can already tell he is a very visual learner. He can spell his full name, my name, Sim’s name and the names of his siblings, but can’t tell you what each letter is. So by the end of the summer, I want him to be able to

1.  *Know his alphabet by sight and sound

2.   *Count to 10 (consistently) and recognize the number 1-10 and be able to count objects up to 10.

3.    *Write his name, phone number, and address. (This will actually come easy to him, as he snaps pictures of words in his brain and then writes them out).

We have restarted RPM with Noah and he is finally able to point in isolation without me holding his finger. This is huge and will go a long way towards people accepting that the thoughts he writes are his alone.  One a scale of 1-10, we’re at a three, so we have a lot to work on this summer, but I’m confident that if we consistently work on it all summer that he’ll be able to fully point on his own come September.  By the end of the summer, Noah should be able to

1.   *Spell his full name, address, and phone number on the letterboard

2.   *Be able to point on command – independently.

3.   *Progress from one row of letters at a time to two letters. He had progressed to a full letterboard (all letters of the alphabet on one sheet), but now that he’s learning to do it independently, we’re having to start over. I’m hoping that he can independently  master half the alphabet on one sheet and progress to a full sheet by the end of the year.

It will be tricky to accomplish everything, especially as our 19 year old niece, Hannah, is coming over from England to stay with us for 6 weeks. There will be lots of sight seeing and hanging out and doing everything we can to make sure she has a great time. But it’ll also be really good to have an extra pair of hands around and I have a feeling the kids might work a bit harder in order to impress Hannah.

Anyway, there you have it. Our educational goals for this summer. We’re not actively working on writing or spelling or history or science. We’re just concentrating on the life skills that every child and adult needs in order to navigate through life… one chunk at a time. I mean, you have to be able to spell your name, know your address, and count money. And these are things that we’ve worked on for the last year and a half, but we also worked on other things, too, so I’m hoping that doing an intense summer boot camp will finally help cement these things in place.   And if it works, it may be how we approach our schooling in general for Nandi and Eli. These LD’s aren’t going to go away. So maybe it’d work best if we taught life skills and only a few at a time.

It’s a work in progress.  

Hope everyone has a great summer!

No, we didn't adopt again. Just a friend.

Sunday, September 29, 2013

A VERY long update

Never in my wildest dreams did I imagine that I would go 7 months without blogging. Honestly, it's been the last thing on my mind, and it wasn't until I received a comment the other day asking if I was blogging anywhere that it really occurred to me that I hadn't blogged since February.

Generally, when I don't blog for stretches at a time it's because we're going through a tough period. I learned long ago that it's really kind of depressing to read blogs when people are going through a rough period, and even though I wonder if other moms or families would be helped in knowing that maybe they're not the only ones going through struggles raising kids with special needs (especially as they enter the pre-teen years), it does serve as depressing reading.

Plus, and I've mentioned this before, I made a mistake of using my children's real names when I started this blog and I wish like anything that we had a bit of anonymity. Also, and this is a repeat, too, but things that I used to blog about that I could spin a funny story about..... having an embarrassing meltdown in public, or a sassy attitude or being terrified to enter any stores during the entire month of October because of all the Halloween decorations.... well, maybe I could spin a story about that when a child was four, but it's not so funny now that the child is 10. A bigger age comes with bigger issues, and when you're still dealing with issues that occurred 6 years ago and pile them on top of the new issues, well, that's a helluva lot of issues.

And homeschooling? Oh Sweet Jesus, come rescue me from this nightmare I've gotten myself into. Things are actually going really well with Nandi. She LOVES homeschooling. But we are still facing defiance and refusal and anger and massive mood swings with Eli.  I honestly don't know what to do. It seems so easy to say that public school is the answer, but, trust me, it's not. You just cannot even imagine. It would take two people to drag him into the school every morning and his anger, honestly, frightens me.  It's a volcano that's waiting to erupt, and I think everyone is safer with him at home. Even though it makes our home life very chaotic and unstable.

I think the reason I don't blog anymore is because, honestly, y'all know I can't write a short post. If I sit down to write, it all comes spilling out. It's therapeutic and cathartic, but it also blows the cover on the privacy that I feel my kids need. Yet, at the same time, I've bottled all this up, tried to act like everything's okay, but it's not. At some point, I will have to delete this blog and start over, but I don't know when.

Homeschooling is probably the thing that's on my mind the most. Unschooling would be so easy, but it would make me feel like I'm giving up. He has such learning issues... documented, tested, verified learning issues. I'm afraid he'd never learn. But the emotional toll that it's taken on me and the others is unhealthy. (Noah has gained over 20 pounds since I started homeschooling Nandi and Eli because he is getting zero attention these days and sits and spins tops all day long).

The thing is... people on the outside don't see this. They see a wonderful, charming, sweet, polite, loves Jesus, loves his siblings, "wish we had 100 just like him!" 10 year old little boy. And the good days? Oh, they're soooo good! We're all in good moods. I'm not hiding in the bathroom crying. Life is wonderful and I think, "We can do this! Life is so good!".  But on the bad days? Lord help us, they are BAD! We are walking on eggshells. Nothing gets done. I cry all day. Noah cries. And the guilt sets in. "I'm not enough."  "I'm failing them." "I can't do this They deserve better"  It drains me so much, emotionally, that I have nothing left to give, and sometimes, by 11 o'clock, I'm done for the day.

See why I don't blog much? This post is going to embarrass the crap out of me tomorrow morning.

There are some good things on the horizon. A new charity called "Health for Orphans" has taken a special interest in our kids and they brainmapped Nandi and Eli last week. There is a possibility that we'll be able to start Neurofeedback (NF)on both of them and I am praying that it works.  The charity is new and just received their nonprofit status, so they're still in the fundraising stage, but I'm hanging by a thread and a hope that NF will help.Nandi's brain waves showed a ton of increased activity in the frontal lobe area and resembled the brain waves of soldiers returning home from war. PTSD.  Hmmm, I wonder what MY brain waves would show if mapped? *smile*

We discovered that Naveen has a milk allergy and his chronic diarrhea has started to clear up.Now, if only we could work on his attitude! He has started to mimic Eli when he gets angry, but we're nipping that in the bud. This is the difference between a child who can control their behavior and a child who cannot. I truly believe that some of Eli's issues are birth related and due to negligence during the first 9 1/2 months of his life. Maybe some genetics, definitely some brain chemistry stuff going on. His brain mapping showed a Neuro Methylation issue. There's just a lot going on.

Naveen, though, despite his 4 year old little attitude, is a blessing. He's the funniest kid ever and has the cutest little smile. He is nowhere near ready to learn and I don't plan on homeschooling him for another year or two.

Nandi is doing so well. I was shocked at what her brain mapping revealed, but it does make sense. She decided to sit out of soccer this year, but we are thinking about 4H or Girl Scouts for her. She's game for anything. She has decided that she wants to be a house cleaner when she grows up. No, I'm not making that up. That's her goal.  Actually, she's an excellent cleaner and with her frugal skills, she'd probably end up doing better than all of us. She has the cleanest room in the house and is always ready and willing to do her chores. She's saving up her money for an Itouch and should have enough money after her birthday next month to get one.

 She'll be nine. Nine!

Noah is hitting puberty and we are so not prepared. Oh, the stuff I could blog about, but can't. Just imagine a child with severe autism going through puberty... going through alllllll the stuff other teenage stuff other boys go through, but has no self care skills and is still in diapers. We can laugh about it, but it has presented a whole new set of problems.

Noah is still our sweet, little (big!) boy, though. I have sorely neglected him the last 9 months - academically - and we need to start RPM again. There's not a quiet space in our whole house and I fantasize about closing off 1/4 of the garage to make a little school room with just a desk and a few supplies.  I still read to him and we finished 'Out of My Mind' a few months ago and we're in the middle of 'Wonder' right now. Both are amazing books for 5th-6th graders and I highly, highly, highly recommend them.  Also, we've started resuming daily walks (well, if everyone cooperates, we actually manage walking about 3x's a week).... and I'm pushing Noah in his stroller half the way and he walks the remaining 1/2 mile home. I wish we could walk longer, but Nandi can't walk long with her leg, so we do the best we can. Noah is slowly starting to lose some of the weight he gained. (He went from a size 8-10 to a size 14 in a matter of months).

Eli has become a Star Wars fanatic. Especially Angry Bird Star Wars. We have successfully passed the dinosaur stage. Whoo hoo! It only took 7 years! We bought a ton of Star Wars readers off Amazon and he is starting to read.... something we never thought we'd see. He still won't read a chapter book, but he's reading!  He is not too much on hobbies or activities, but we did manage to convince him to go to AWANAS and he likes it so far. He made some peg dolls and sold them to all my unsuspecting, elderly relatives (it's such a funny story) and raised $60 bucks to donate to Awanas.  I don't know if I should be proud that he conned money out of people living off social security, but I was a bit impressed with his gumption. He's also really good with Naveen (when they're not fighting!) and has decided that he will entertain him while I'm working with Nandi and Noah.... for a small daily fee.

As for me, after successfully giving up sugar and coffee for ages, I'm back to drinking my French Vanilla Cafe in order to survive. I've been solidly gluten free for 2 months now and my joints are better and I've gone two months without menstrual cramps (I'm the Queen of TMI). I was diagnosed with mild lupus in my early twenties and used to use a cane to get around, but things got better when I added meat into my diet and I was able to go off my meds. Lately, though, my joint pain returned and Sim was having to pry my fingers open each morning and I couldn't even raise my arms or get the lid off the orange juice. I was having to lay on the couch for hours at a time during June and July. I started yoga and that helped.... but I've slacked off now that the school year has started. Anyway, finally realized (after starting/stopping gluten for YEARS) that it was poisoning my body and I can officially say that I'm Gluten Free.  I can resist pizza... even on my worst emotional days, which is major. MAJOR.

Sim is continuing to work crazy hours. He's often called in 6-7 days a week and away for 12-14 hours at a time. I fantasize about moving closer to Dallas. (He commutes 1 1/2 hours to work each way). But, my parents are out here and they're my lifeline.  I have two close friends here, but one is moving next week (sob! sob! sob!) and the other has three little girls on the autism spectrum and is busy. I would die without my parents, but it might get to the point where we have to move to the city. I admit that I hated it here for ages, but the trees and scenery have saved me. Plus, if we lived in a proper neighborhood, I'm sure the cops would've been called on us 20 times by now with the meltdowns that occur on a nearly daily basis!

My parents watched the kids for a few days in August and Sim and I went to New Orleans for my 40th birthday. It's the first time we've been away without the kids since 2006. We drove up on a Sunday and came back on a Tuesday, but it was worth it. We needed that time alone so much. Also, being in New Orleans renewed my passion for reading and I spend any extra free time that I have (I try to get up an hour before the kids each morning) reading history and biography books. My two loves! It's been great getting to rediscover my love for something other than education or autism or bipolar or therapy methods, etc.

Right now, as I type this, Noah is in his room on his beanbag and the other three are in the living room watching "Good Luck Charlie." All is calm right now. It's drizzling with rain and the chaos and meltdowns of this morning have passed. Sim is at work and I'm going to attempt a new chapter of "Life of Fred" with Eli. (This math curriculum has been the BEST homeschool purchase I've made. I can't rave about it enough for right brain, non traditional learners.)

Sorry for the ramble, but this is what happens when I don't blog for 7 months.

Wish us luck and say a prayer, if you think about it. Would really appreciate it. Thanks.

Tuesday, February 26, 2013

We're Still Alive...

Oh my goodness... how on earth has it been 2 months since I last blogged? Someone warned me that when I started homeschooling that I could kiss my blog goodbye. She was right... I rarely have any free time to sit down and type anymore.  I construct all these elaborate blog posts in my head, but they never make it to the computer. And then before you know it, 2 months have passed by and you don't even know where to begin.

So, I'll try to start somewhere...

We officially started homeschooling at the beginning of January. The first week was heaven. The second week was hell. And the third week was the same. By the fourth week, things started to even out and we have started to find a rhythm.  It's NOTHING like I thought it would be and at the same time, it's everything I hoped it would be.

I think my biggest fear was that I would go crazy being around the kids all day.  And that's hard to admit because it just sounds so awful. But, if you want to know the truth, I was one of those moms that hated the weekends, looked forward to Monday mornings, and couldn't wait until her kids were old enough to ship off to Camp Wanatoka or Tawokoni or whatever it is way up north for three whole months in the summer.

It's not that I didn't love my kids, but I had a hard time dealing with their issues. And, believe, I already know that I have a ton of issues myself, so I'm not solely blaming my children's behavior for the way I was feeling. But the constant complaining and screaming and fighting and fears and anxieties and homework battles and insecurities just about drove me insane. I didn't know how to handle it and I was doing a pretty poor job of pretending.

But, despite those feelings, and as crazy as this sounds... because I know I probably just made myself sound like the worst parent ever... I did have a deep maternal instinct and love for my kids and I knew that homeschooling was the best option for them. Our family was going downhill... fast... and Sim and I both felt that bringing the kids home was the only solution that would save us and keep our family together. And I loved my kids enough to bring them home, even though I was terrified about what it was going to do to me. I mean, I knew it was the best thing for them, but I wasn't so sure it was the best thing for me.

So, we brought the kids home in January and the strangest thing happened.... after our rough patch, things started to settle down. And I started to realize that my kids are pretty cool. I mean, they're really, really funny. And they have the most creative ideas. And they're actually really sweet and kind and just generally awesome. And Nandi and Eli.... who actually hated each other... are best friends. They play together all the time. And the change in them is remarkable....

Eli's anxiety has almost disappeared. Not completely... I mean... that kid definitely has an anxiety issue.... but his behavior has completely changed now that he's not stressed out so much.  We used to complain that his teachers got the best of him and we got the leftovers, and that's pretty much how it was when he was in public school. He'd hold it together and then get home and explode and have huge meltdowns.  We still see them. I mean, he does not like school ( he has a ton of learning issues that make him feel "stupid" and he doesn't even want to try half the time), and it's definitely a battle. I can't lie about that. I'm slowly learning how to handle and preempt his almost daily explosions over schoolwork, but the rest of the time he's great. He is so good with Naveen.... it's been amazing to watch. And he tries to help Noah.... and he plays so well with Nandi. They still fight.... and sometimes I question myself over the decision to pull them out of school... but, for the most part, they're doing really well.

Nandi has really surprised me. We had been getting a lot of leftovers with her, too. In my last blog post, I wrote how she was so jealous of Naveen that she'd come home from school and just melt down..... screaming, pulling her hair, clawing at her chest. It was horrible. And that jealousy of Naveen is still there.... and we have had one or two episodes that just made my heart sink... but she's loves to do school work and is probably the hardest worker I've ever met. She is a homeschooling mom's dream. She wakes up, does her work, asks for more... I mean, it's nuts. A total change from Eli.  She even asked me today if she could go to "Chess Camp" this summer.  She's in piano and just started soccer and is already asking to join Girl Scouts and 4-H. She blows me away. She's totally game for anything.  Eli, on the other hand, wants to do absolutely nothing, but Nandi is a real trooper.  She does still have some issues with Naveen and we have to watch the two of them sometimes because we have seen some old sneaky habits crop up... The "accidentally" pinching or tripping or knocking over.  But, Naveen has fast become a little tattle-tale, so Nandi's not able to get away with much.  But despite all of this, the good outweighs the bad and we know that we definitely made the right decision for our family with homeschooling.  We're going slow... truthfully, we've only been doing Spelling, Reading, Writing, and Literature for the last 7 weeks.  We're just now introducing Math, and, most weeks, with all of our therapy and doctor's appointments, we're only managing 3-4 days of school a week.  So, we'll definitely have to do school year round in order to keep up, but we've seen way to many emotional gains to really worry about it right now.

As for Naveen and Noah... well, I'll have to do another blog to update about them. Otherwise, this one will never end!  Both are doing great, though, and I'm constantly aware of how much time I'm able to spend with the two of them. There's quite a bit of guilt going on with that... especially with Noah because his one on one attention time has been cut drastically, but we are making a valiant effort to improve his health, and with that, we're seeing some minor improvements. I finally got around to making my bone both! Cool and gross at the same time. And don't get me started on the fermented cod liver oil and raw liver shooters I've been taking.   I decided to take them first to see how they tasted before I tried them with Noah... and after taking them I realized that there's no way in H-E-double hockey sticks that I'd ever get them down Noah's throat.  But I did read that you can rub fermented cod liver oil on a child's butt and it will absorb just as well as if they take it orally. So, poor Noah's little behind smells like a can of sardines... but there's been some studies on fish oil provoking speech in children with apraxia... and, by golly, if Noah hasn't started babbling and saying a few one-off words.  Nothing consistent, but he's said a few words here and there and that's given us enough hope to continue making our house smell of rotten fish.  And if I can somehow grind that liver up and hide it in his veggie/rice concoction then maybe he might start reciting the entire alphabet. Who knows.  Anyway, practically all my time is spent either homeschooling or researching different types of healing foods and that's why I haven't been on here lately. (By the way, did you know that if you leave water kefir out to ferment too long that it turns to alcohol? Yeah. It might be a good idea to test it first before you give it to your kids....)

Okay, I've written way too much. And without pictures. I know! I've violated every blogger rule.  So, hopefully, it won't be two more months before I blog again. But, rest assured that we are doing great. We still have rough patches and we've quickly learned the truth of the motto, "It's a marathon, not a sprint".  And, well, we all have really high hopes for the future.  I know that homeschooling's not for everyone and that it looks different in every family, but if you're considering it then I think you should go for it. It just might turn out to be best thing you could do for your family.  It definitely saved ours...  =)

Monday, December 31, 2012

Out With the Old and In With the New (Homeschooling!)

I have started and restarted this post a million times. I started it being serious and I started it being funny and then I'd erase it each time because I didn't want to offend anyone... because the truth of the matter is this - when you talk about your educational decisions for your kids, some people are going to get offended. And I hate offending people or causing controversy or any sort of discomfort whatsoever. But here it is... we've decided to pull out Nandi and Eli from public school, and next week, we will start homeschooling them.

I'm going to be the first to admit that I'm a bit of an educational snob. I am extremely pro education. I love to read and I love to research and I love to think that my kids will go off and get advanced degrees and discover how to clone people and make robotic machines that will do all the laundry and fold it and put it away so I will never have to do it ever again.

I have high , if somewhat slightly unrealistic, hopes for my kids.

It never occurred to me that I would have kids with learning issues or emotional issues or health issues. I always assumed, from a very young age that any children I had would excel in school, join the debate team, graduate in the top 10% of their class, get a Bachelor's degree, join the Peace Corps, come back and do a one year Rhodes Scholarship to England and get their Master's degree, start a career and get a PhD at night while working on their career.

No, I'm not joking. Why do you ask?

I used to look down on homeschoolers. Not actual homeschoolers... you know, the ones who actually home school. But the ones whose moms made sure their daughters learned to cook and, oh my word, sew, because why on earth would you need to learn to do something like that when that's precisely why God invented tailors and old ladies? Why would you want to learn how to quilt when you can buy brand new duvets at Bed, Bath, and Beyond? And is learning how to make ten different types of breakfast casseroles really going to advance your career? Unless you run a restaurant?

There are moms out there whose sole goal for their daughters is to learn how to bake, budget, and raise a baby.  That's their goal. No college, no career. Just get married and raise a family and run a household.

There are moms out there whose sole goal for their sons is for them to grow up, get married, and get a job at the local water company or electric company or local plant.  No college. No world travel. Just get married and raise a family and provide for the household.

And, you know, I'm really ashamed to admit this, but I kind of looked down on that. Not the people themselves, but those goals. I've always said that I want more for my kids. I want more for my daughter. I want her to go to college and see the world and be anything she wants to be.

And then I had a daughter who has attachment problems. And learning issues. And who is so jealous of her little brother, who gets to stay home with me everyday, that at least 4 times a week, her jealously spirals into rage and anguish and she will stand in the middle of the living room floor screaming at the top of her lungs, and ripping off her clothes, and clawing at her chest, and pulling at her hair. And she doesn't know how to regulate. And she doesn't know how to calm down. Because in her mind.... her mind... I love him more and I will leave her one day and I will abandon her one day and she is not worthy.

That's when we started to question.... how can you possibly work on attachment if your child is away from you for 8 hours a day? And how can you work on attachment if that child is so consumed with feelings of jealousy and unworthiness that she sabotages every hour that she is home?

At what point does a child's emotional welfare trump a child's education??

We could send Nandi to school and she could learn to divide fractions and write essays and eventually graduate from high school, but is it worth it if she doesn't know how to establish and maintain relationships? If her feelings of worthlessness are so strong that she turns to the first boy that says she's pretty? If she tries to fit in by hanging out with the wrong crowd? By trying to get our attention, because in her mind any attention is better than no attention, by skipping school and failing?

I know it sounds crazy because she's only 8, but parents who've been in our situation know that these aren't crazy thoughts. These are realities for our children. We see things every day that would shock you. These are strong possibilities if true attachment is not made.

Nandi is so insecure that I can't even begin to explain it. She has no friends. Zero. None. And that's not an exaggeration. She does not know how to make friends, how to act around friends, or how to keep friends. She has an auditory processing disorder and a speech delay that makes communication very difficult. She's in second grade and has a reading level of 12. Despite being in  2 hours of pull out classes and tutoring... daily..she is failing reading. And then she comes home and takes it out on us.

At the same time, as much as she tries to push us away, I think she'd spend every minute of every day in my lap if she could.  She wants to be by me, lean on me, or sit on me every minute of the day. After two years of successfully sleeping in her own room, she has moved her mattress next to my side of the bed and sleeps there every single night. Sometimes she wakes up screaming that "The worries are on me! The worries are getting me! Get them off, Mommy. Help me!"  And my heart breaks and I wonder what her first three years were like and I know that she needs to be with me now.

And I think about those moms whose who are at home teaching their girls how to bake. I think about how they're teaching their daughters how to be good wives and mothers and I think that maybe I was a little too quick to judge. And I think that maybe they had the right idea all along. Because isn't togetherness and security and family really what it's all about?

Don't get me wrong. I'm going to teach Nandi how to do math and how to read. She'll learn all about science, and because I'm a history buff, she'll probably learn more history than she ever wanted to know. We'll do a proper curriculum and take tests at the end of each school year. But I also plan to teach her how to cook. And teach her how to do laundry and teach her how to look after a house.  Because my goals for her have changed. Because her history and her personality have necessitated this change. Because baking and budgeting and doing chores together means that we'll be spending time together and I think that's the one thing she wants and the one thing we need more than anything.

I hope she'll go to college someday. And I hope she'll join the Peace Corps someday. And I'm still holding out that maybe she'll invent that robot that will ensure I never have to do laundry again. But, above all, I hope she'll be able to find love someday. And keep that love. And have friends. Real, true friends. And I hope she'll be successful no matter what she chooses to do. And know that we love her and that she's worthy no matter what she chooses to do.

And I know it'll be hard. And to be honest, I'm scared to death. I'm actually more scared about homeschooling Eli than I am about Nandi. And about ignoring Noah. And about the huge big mess Naveen will create while we're doing our school work. The whole thing terrifies me. But I think it's the one thing that my kids need right now. And we don't have a lot of money. And we don't have a fancy house. And we don't have much of anything, really. But we have time. Lots of time.  So that's what 2013 is going to be about this year. Time and family and attachment and togetherness and love.

And possibly teaching my kids to learn to love math and science so they can invent that robot one day that will ensure I never have to do laundry ever again.

Friday, December 21, 2012

Merry Christmas From Our Family to Yours

Our family would like to wish all of you a very Merry Christmas and a Happy New Year!

May you get lots of kisses under the mistletoe, Nutella in your stocking, remember the reason for the season, and stay up to watch the ball drop.

We're ending this year with the flu (all of us!), lots of school meetings, tons o' school drama (more about that later!), and more medical bills than I care to count (another hospital stay for Naveen just last week!!).

But this year also brought our missing puzzle piece (Naveen!), new friends, old friends, the loving and continued support of our family, exciting travel, and lots and lots of laughs.

May we continue to be so blessed in 2013. Happy Happy Joy Joy and a big Ho Ho Ho!

From our family to yours, Meeeerrrry Christmas!