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.

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.

7 comments:

Nikki said...

I hope I'm as good of a Mom as you are one day! I'm happy you're blogging again :)

Nikki

Peter and Nancy said...

I always love reading your writing -- you see your children so well, noticing their strengths and being realistic about their struggles. You are very creative and resourceful . . . and hardworking! I'm so happy to hear that you had a little getaway. I will pray for you, too. Sending love,
Nancy

Julie & Patrick said...

Well, certainly the grass does not get a chance to grow beneath your feet! Thanks for the update. It sounds to me like you are doing all that is humanly possible to keep moving forward, and though you don't give yourself much credit, you DO have your fingers on the pulse of what is going on in your family. I don't think anyone could ask more of you than that! I am in that blog waffling place too. The girls are getting older and though they don't mind now, will certainly become very opinionated about their lives being shared soon. It is hard to know how to handle this. Good Luck to you...hoping that the school year settles down a bit and that you manage many more of those rejuvenating getaways!

Julie

Karla in MN said...

So glad to see an update...Hugs and prayers headed your way! Have you heard of the GAPS diet? I just heard of it on another blog whose family has gut/allergy & now Autism issues. They are starting it...anyhoo...just wanted to say you are awesome and you can do it!

The Hamstras said...

So proud of you and said a prayer for you this morning :)

swathy said...

I just love you and your family..I AM FEELING ASHAMED OF WHAT I PRAY FOR MY SON EVERY DAY TO GOD:(

robin said...

Well this worked out perfectly for me since it's been about 7 months since I last checked in! I could unload as well being as I home school my two girls and I have a son with autism. He is only 8 and I am cringing about the preteen hormones. I shudder to think at what I will walk in on one of these days....I have prayed for you and your family throughout the last several months and I wish I lived closer so I could actually have the chance to meet you one day. You have a such a strong spirit and that is what keeps us readers coming back. If I appreciate anything it's honesty and transparency and you have both! It's refreshing! So, by all means, unload all you want on here because it IS encouraging. Stay strong and thanks for blogging again :)