A Little Too Late?

It seems as if my procrastination has gotten the better of yet another "project" of mine. Here I thought I'd be writing in this blog constantly, filling my need to extricate the feelings of frustration surrounding the journey of being a "special needs kid" parent and documenting progress on Ethan's situation. However, it appears the situation is nearly over. Ethan, for the most part, cannot be discerned from an NT (neurologically normal kiddo) any longer. Don't get me wrong, I'm completely ecstatic about this. Our OT, lovely Miss Beth, has told us that Ethan is doing so well and has met all the goals she initially set for him. So, we get a month off of OT! Joy! Today, Ethan had his "kindergarten round up" where we go check out the classroom, meet the teacher, ask questions, etc. Ethan mingled and played with his future classmates like a pro and, get this, went to the bathroom by himself! Flushed AND washed BY HIMSELF! The whole enchilada! Didn't even tell me he had to go (I overheard him telling one of his new pals before he sauntered all confidently over to the potty!). While this may not seem like a big deal to the parents of most 5 year olds, this is huge with us. He's even asking to flush for Sara every time she goes in her little potty and we dump it into the big one. We'll have to see how things go in the fall when he's in his new surroundings and they have a firedrill and I'll cross that bridge when I get there. But for now, I'm just going to bask in Ethan's accomplishments, give him extra hugs and kisses and thank God for finding a way to get me to adjust his diet.
:)

Five for Fighting

The band, Five for Fighting, is generously donating $0.40 to Autism Speaks for *each time* the video is viewed. The funding goes toward research studies to help find a cure. When you have a moment, please visit the link below to watch the video and pass it along to your friends and family. They are aiming for 10,000 hits, but hopefully we can help them to surpass this goal.

http://www.whatkindofworlddoyouwant.com/videos/view/id/408214

Ethan may not have autism, but SPD is a hair's breadth away and many autistic kids have SPD. I have gone through and witnessed much of what is on this video. For anyone out there with kids with neurological disorders such as SPD and autism, please know that the GFCF diet has worked wonders for my Ethan. It's worth giving it a shot. A good diet, thoughtful supplementation, a lot of hope and tons of love can equal symptom reversal. Ethan is the proof.

Peace,
Steph

Baby Steps

So, the recent drama is with my pediatrician. Last week I came home to a message on my machine from her saying that our OT had called, concerned about Ethan’s diet, that he wasn’t getting the nutrition he needed. W.T.F! She proceeded to suggest meeting with a nutritionist and doing some allergy testing for celiac disease. For those of you who aren’t familiar with celiac disease, it’s basically a wheat/gluten allergy that results in a distended belly, and an inability to process nutrients resulting in a failure to thrive situation, basically. Okay, any of you who know Ethan know he’s a big kid. No failure to thrive there, I’d say. But, who am I? Just a mom who figured out what was wrong with her kid before her pediatrician did! Actually, the ped still hasn’t diagnosed him and she’s been seeing him since he was two, so don’t you think she’d notice a failure to thrive or distended belly?! But, again, I digress. So, this doesn’t add up to me because my OT had just told me how impressed she was with Ethan’s food list (we’ve been doing something called food chaining to introduce new foods, tastes, smells, textures into Ethan’s diet because he is ultra sensitive in the smell and taste department, which has previously resulted in him being the uberpicky eater of the house). I call my OT. I leave a message. I wait four excruciating days. But, she does indeed call back. She had been on vacation, not avoiding me. When I told her the message from my ped. she just cracked up. “That is absolutely not what I said,” she said, which is what I had figured. I could tell you the whole conversation, but you would get bored and sick of acronyms. Suffice to say, it all can be chalked up to ignorance of or not paying credence to or not even acknowledging alternative healing methods, and really not knowing the language involved, and there definitely is another language involved here, believe me.

This whole thing begs the question, Why is something I find so logical considered to be alternative? Haven’t we always been told we are what we eat? What Ethan was eating was starving and dazing his brain, so we changed it to something that would feed that brain instead. I give you …

Exhibit A: a conversation between Ethan and me just last night.
Me: You’ve got school pictures tomorrow bud.
E: Okay.
Me: (Scooby Doo-like surprised sounds in my head, complete with the wacky eyeballs and head shake. So shocked I couldn’t say anything. He’s always hated pictures.)

Exhibit B: This morning, before school.
Me: You’ve got total bed head. I’m gonna have to spray it and brush it down for PICTURES, okay?
E: Okay.
Me: (Scooby Doo-like surprised sounds in my head, complete with the wacky eyeballs and head shake. He has always hated it when we touch his head.)

Additional exhibits:

• He started rattling off the names of his classmates that he wants to invite to his July birthday party. Previously, even despite me asking, he could only remember the names of two or three classmates, one of whom is one of my best friends’ daughters so he sees her all the time and doesn't really count. Well, she counts, but in a different way.
• Out of nowhere, he insists on drawing a picture for James (when E said this I looked quizzical, wondering if he was a friend from class whose name he'd never mentioned, and E looked at me and said, “You know, your friend who came and visited.” [Please note this means he is understanding facial expressions which is another thing he’s always had problems with.] James visited last summer.) This alone is a big deal on many fronts including name recognition, understanding of relationship, memory, and so much more. It all amounts to him being PRESENT.
• He eats all his protein every meal and is eating more than just apples and carrots in the fruit/veg category (casein issues often deplete zinc, which can cause a complete aversion to fruits, veggies and protein because it alters the way they taste).
• How about HE FLUSHES THE TOILET NOW! Maybe not every single time, and maybe sometimes he still has moments of fear about it, but he does it.

There are so many more little strides here and there. Sure, we still struggle with many things every day, but baby steps. He’s still sad and struggles with his self-esteem, but this is very typical of SPD kids and, I think, will be our biggest hurdle. But he’s starting to jump the smaller ones and I have hope and faith that he will leap over those biggies with a huge smile on his face some day.

The Fauxpert (faux expert) Diagnosis

I was talking to my older sister today about people readily making their own diagnoses about other peoples’ kids’ problems. It seems everyone out there is an expert, from which diaper cream to use for a rash (my fav is Boudreaux’s Butt Paste) to, well, autism it seems. I mean, I catch myself doing it all the time, especially when it comes to the dietary treatment of any number of ailments. Am I a nutritionist? Hells to the no. Technically speaking, I should only be allowed to give out unsolicited advice about grammar and color use.

Two other people -- my neighbor (as I mention in the “About Ethan” section) and my brother-in-law -- both mentioned Ethan having autism before we ever had him evaluated by a professional. This was incredibly difficult for me. Sure, I’ve known since he could walk that he is different, but when someone else, sometimes someone you don’t know all that well, busts out with a serious medical diagnosis, it’s a little heart-shattering. I know people put forth these ascertains in the best interest of getting the child the help they need, but to tell the truth, it’s painful regardless of the intention. At least for me. Maybe I need to give my ego a good talking to.

However, if that someone giving their two cents on my son’s neurological condition is a doctor, that is another thing entirely. My child’s doctor, with whom I discussed Ethan’s characteristics many a time and who has seen Ethan at least once a year (in a stressful situation no less), always asserted that he is a normal child. Defiant, yes. Autistic, no. The social worker who observed him barely eeked out a sensory integration issue diagnosis. And she's an autism expert. Case solved.

In the case of my brother-in-law, he was actually relaying the words of his sister, who is indeed a nurse and has two special needs children of her own (neither with SPD nor autism), after he had told her a story about one of Ethan’s episodes when I was in the hospital having Ethan’s little sister and he was having a tantrum because he missed me. Um, Ethan was having the tantrum, not my brother-in-law. Oh, isn't that a funny picture ... my brother-in-law having a tantrum ... hahahaha. ... Anyway, I digress. Now, let me clarify that to witness one of Ethan’s almost out of body tantrums is disturbing. But, his sister never saw it. She’s never even met my son. I was not insulted by my brother-in-law, who I know loves Ethan very much, but I was by his sister whom I myself haven’t even seen since she was wearing a junior girls’ clothing. In the case of my neighbor, well, all I can say is she meant well when she was implying E is autistic. Regardless, it doesn’t change how it made me feel.

The thing is, if you are not the parent of a special needs child, you will never know what it feels like to have others judge your child in this fashion. Every day I wake up knowing the challenges Ethan faces, knowing his eccentricities and sensitivities, and, if it’s a good day, having great hope in his future and knowing in my heart that he will become a stronger person because of the additional adversity he has had to deal with. I also wake up every single day with a small knot of dread in my gut that he will indeed be judged, possibly treated differently and, worst of all, pitied because he is different. To have a friend non-expert diagnose to me the characteristics he struggles with every day is a mixture of rubbing in something I already know, punctuating it with a slap in the face then kissing me. They mean well, right?

Erf Day

Today has been a huge improvement over yesterday. I've stopped brushing Ethan, per his request, but only if he can show me that he can stay on "green," meaning not too hyper and uses his listening ears. We saw his OT today and she said he is doing wonderfully. We discussed his sadness, sensitivity and skewed perspective about how he has no friends (I only ever see kids enthusiastically waving at him and saying "hi") and she suggested we consult a child psych for anxiety. I had already planned on doing that yesterday because of last week. I don't know if it was the complete cutting out of the casein, but last week just emphasized that Ethan is struggling with how his head processes things. He was really sad all week and instead of having his usual happy dreams, he had nightmares that his father and I were trying to get rid of him. I think in one he said we were sending him down a river or something? Talk about making me lose it. So, we'll be meeting with a child psych in about three weeks.

After the OT appt. we went to IntaJuice (he still won't drink smoothies, so Sara and I indulged), and then headed to the nursery to buy somethin to plant since it is Erf Day and all. He was so cute, walking thru the store saying to anyone who would listen, "I looooove to garden! I need five plants, one pink, one purple and some white ones." When I started putting things in the wagon for our plant pots out front, his sense of order went all ballistic and he started in with the usual stuff; hitting his hand on his head, rocking back and forth, repeating, "five plants, five plants, five plants." He was so mad that I wanted to put my plants in the wagon with his. But, this comes with the territory and is much better than the old days of getting his haircut with him screaming bloody murder. So, I talked him down and the plants lived harmoniously in the wagon all together. He did insist on buying one packet of pansies after we had already checked out, but I could tell that somehow this last pansy purchase fit in to his "five plants" thing, so I was happy to hand over the $2.99.

We came home and planted and he apologized for being rude to me in the store. This is what kills me and I know must kill him. He can't control what happens when things start to spin out in his head and when he finally calms down he's so sorry for what he's done when he's out of control. This is why I worry so. Plants, no problem. But what about when he's older? It's not always going to be as benign as the number of plants in the wagon.

Rough One

We’ve been going to OT for several weeks now, once a week for 45 minutes. I brush Ethan at home. We do heavy work “obstacle courses” a few times a day. We’ve switched almost entirely to GFCF, and generally speaking Ethan has been a good sport, but some days lately I feel he’s regressing. We have not yet found a substitute he likes for milk or Cheerios. I had read that Lucky Charms is GF (it uses whole oats) and was praising Jebus for it, until I read that oats are not permissible on the GF list (I thought oats were okay?!). So I go searching today for a cereal for my little trooper Ethan. I buy a GFCF Cheerios that looks the part and then I get home and taste one and it’s horrible. If there was a word to describe something way beyond horrible, I would use that word instead. It was a tragic assault on my taste buds. And I just fell. I could feel my heart thudding to the ground and a short while later my eyes turned into water fountains. What am I doing? Am I doing the right thing? Will Ethan be okay? Grow up to be a “normal” person who has friends and self-confidence? Will he love me forever or just pull way like I already feel he is starting to? I’m floating down this river of uncertainty and am doing all I can to struggle to the surface to take a gasp of air every few hundred yards only to be pulled back down into the eddys alternating between fighting the currents and going limp and giving up. What am I doing?

Of course, it’s Monday so I have to pick him up from school with my puffy eyes, hiccupping crying jag and all. I try my best to pull it together, to think of anything but Ethan and the f’n cheerios for fifteen minutes, rehearsing in my mind what I’m going to say to the other mothers when they ask me what is up (several of my friends take their kids to the same school, of course.) I don’t want to talk about it. I don’t want the waterworks to start again. I just want to get my sweetie and leave.

I do pull it together and get in and out like lightening before anyone has the chance to see me long enough to notice the puffy bloodshot eyes. But, Ethan has had a bad day, too. His teacher tells me he was sad today. Go figure. At least he didn’t have to taste those God-awful fake-O’s. So we get in the car and I just start crying all over again, but I can’t let Ethan see because it just tears him up to see me upset. I ask him if he wants to talk about why he’s sad and with a quivering chin he says, “no”. He’s slipping away right before my eyes and there’s nothing I can do about it.