Wednesday, May 5, 2010

Life Changing


When Gabriel was a baby I decided that he was going to be an only child. I was pretty open that the craziness I'd been thrown into was NOT what I signed up for and adding more to the mix was not an option. I went through a short phase of being pretty ticked off that Young Women lessons never touched on the less than perfect situations that life includes. I felt punk'd. All those nice little lessons talk about the "ideal" in life with no warning or ideas on how to navigate the other situations that arise. I had only found one other person that agreed with me on the lessons. We were talking one night and she said, "Or warn you that sometimes they die." (She only had about an hour with her newborn here on earth.) Many people liked to look at me and laugh when I said only one, but I was so incredibly serious. Stephen knew I wasn't joking and he's the only other one that needed to be on board with NO MORE BABIES. I had a gut feeling that something wasn't right, but didn't feel like I could pursue figuring it out as a first time mom. I just thought I must be the biggest failure wuss that had ever embarked on this motherhood thing and must be making excuses. I was really not enjoying anything about parenthood.

The Lord laughed at me and sent Garrett despite birth control. I was SO mad, then felt guilty for being mad, then was a wreck that something bad would happen to him because I had two vaccines before I'd figured out I was pregnant. Long complicated story short Garrett arrived healthy and fine. Funny thing happened after his birth...I saw what a typical baby was like. This confirmed that I wasn't totally a wuss (I am a bit wussy) but that we needed to figure out what was going on with Gabriel.

At his two year well check the Dr. noticed he was saying nothing. I explained that he had been saying a few words, but had stopped. He sent a referral right away to for a speech evaluation. Here is where I have to make very clear that the Lord sent a baby to us with a long list of stuff going on, but He didn't leave us on our own. He started by sending us the fantastic Pediatrician we have. That Pediatrician sent us to TMC for a speech eval and to an ENT to make sure he was still hearing. He never responded to auditory input so I'd started tapping and getting in front of him like he was Deaf. He'd had so many ear infections I thought maybe he'd damaged his hearing at that point. Even before Gabriel was born I just had a gut feeling that something was wrong. When he arrived and looked fine I just passed it off as I'm crazy. Within days of being home that gut feeling was back. As he grew I kept seeing things that were red flags. Before the TMC evaluation I had to fill out a big packet of paperwork. One of the questions said something about is there anything additional you'd like to add. I looked and thought, started to write then stopped then started then stopped and finally just put it down. I had a suspicion there was some autism going on. He had so many of the symptoms. If it was there, I knew it was mild, but up to this point we had done nothing to address it and had no idea where to start.

The TMC eval happened and the speech therapist called in another therapist that worked primarily with autistic children to help do a more thorough evaluation. In the end the other therapist had some real concerns and referred me to a Pediatric Doctor of Integrated Medicine and a Developmental Pediatrician. Gabriel was just under 2 years old, but only at an 8 month old developmental level. He was tall and very difficult to manage what a amounted to a giant 8 month old.

He started speech and occupational therapy right away, I made appointments with the two doctors we were referred to, and started a series of appointments with the ENT trying to clear the massive amount of fluid out of his ears.

All of this was happening while I struggled with horrible post postpartum depression that set in after Garrett's birth. I think I'm still kinda crazy from that.

My first appointment arrived with the Pediatric Dr. of Integrated Medicine. He specialized in children with Autism and ADHD. He was able to get 95% of his patients off meds with natural methods and dietary modification, the remaining 5% he was able to reduce the amount of meds. Miracle. I arrived tired, worn out and pretty sure I was a complete failure. Gabriel and I went back to his office. We were supposed to sit on a leather couch (I was pretty sure Gabriel would ruin it before the session was over) while we discussed our concerns. He'd ask a couple questions then just watch Gabriel. I squirmed when he did this, I was so used to the looks and comments that strangers so freely shared about his behavior, I assumed he was thinking the same things. Then he looked over and said, "It's pretty hard, people probably say things don't they?" I was in shock, he wasn't judging me, he was validating my discomfort. I almost started crying, but stopped it quick.
Deep Breath.
I'd found help here, and I knew it. He gave me the multiple-elimination diet to see if there were any issues with foods he was eating. He is SOY and LACTOSE intolerant. The dietary modification alone gave me a new kid. Later, he introduced me to the book Transforming the Difficult Child, I read it and was so filled with hope I thought I might burst. Kids like Gabriel, or worse, are simply explained as intense children. It is such an accurate description. That boy of ours lives life with such intense gusto he can hardly contain himself most of the time. It's the nurtured heart approach. These kids need nurtured hearts so badly. He also starting gaining weight with the elimination of soy and lactose from his diet. He was so skinny and looked under nourished. I was always worried about his health. We had to pay out of pocket for this doctor.
IT WAS WORTH EVERY SINGLE CENT!

The Lord happened to bless us with the income we needed to be able to pay this; I'm grateful everyday for that blessing.

We continued with the therapies, diet, and ended up putting tubes in his ears a week after Garrett was born. The ENT said the fluid was so thick and mucus like that he knew why the less invasive techniques had failed. It took quite a bit of time, even with tubes, for his ears to clear out. It was weird seeing the world of sound open up to him. At this point we started to finally see results from speech therapy. Loud sounds still bother him...but only if they are sounds that he's not making. ;)

The Developmental Pediatrician had a wait that was several months long. By the time we could get in we no longer had insurance. Once again the Lord blessed us with the needed income to pay for this visit too. She had gathered all the reports from all the doctors and therapists he'd already seen and asked extensive questions about techniques and methods we were using with him. She sat and watched him for a while, looked up at me and said, "If you'd come to me first instead of last I would have diagnosed him as ______, but you have it managed well so just keep doing it. If you feel like you want to come back in later for more help contact us any time." He has no official label, but remains "managed". That little sentence spoke volumes. I was right, there was something going on. We were doing everything known to help overcome obstacles he was facing and we just needed the strength to keep it up.

Some days we end as glorious failures in parenting, but other days we succeed and are rewarded with the glorious look of satisfied achievement from our boy. We still have struggles. Any time he has to be in front of an audience I'm nervously hopeful that 'today will be a good day, not the other kind of day'. He's still unpredictable, but getting better everyday. Training, training, training. Even if he doesn't understand or know why he has to do something, he can memorize appropriate behavior and is choosing to more and more often to adhere to it.

We've had a rough behavior patch in school. That little life changing book I read (Transforming the Difficult Child) had a behavior modification technique for school aged children. It came to my mind several months ago, but I didn't do anything about it. You'd think I'd have learned by now to act on those little thoughts that come to mind...especially in light of how we've been living. Dumb girl here. Last week I finally acted on it, and it's working! He's working like a champ to get a good report sent home everyday. I'm reading the whole book again with a nearly 6 year old in mind rather than a super delayed pre-schooler in mind. He's well on his way to a green everyday this week. He asked what he gets if he has green all week. I told him he could pick something special to do, just him and Mom and Dad. He looked over at Garrett and said, "He can come too." That's good too. Who knows what he'll pick. {;+D

So what is the point of this really long rambling post?
I am forever grateful for the guidance and wonderful support we found in the professionals that helped us figure out how to help Gabriel conquer the world...or at least his life. I love the uplifting positive light Transforming the Difficult Child refers to our intense kiddos. I am grateful for my gut, it tends to be right, especially when I'll actually follow it. I'm so grateful for the people put along our path that were proactive, but wanted to treat the root of the problem not mask it with meds. We were led by the Lord in which way to turn and who to trust. He wants all of his little children being raised by his slightly less little children to be provided with every opportunity this life has to offer...and He will help make it happen if we turn to Him.

Off to my reading...I've re-read the introduction and am so filled with hope again. I can't wait to finish it....again.

6 comments:

Sheffer's said...

You're wonderful, Mariah. Keep it up. Gabriel is awesome! :D My oldest is intense in a different way, and it's been hard at times to deal with the looks and "suggestions" from those around me. ;) It's good to know we can always ask the Lord for help, isn't it?! :D

Brianna said...

It was wonderful you found professionals who treated the root of the problem, as opposed to just medicating. At work I watch daily the results of those (much older than Gabriel) who were simply labeled and medicated. It is sad. Gabriel is doing great, and so are you guys. It was good to see his progress when he was little, and we loved when you'd come see us before or after his appointments!!! Enjoy the read. I think I'd like to read it at some point. I think it sounds like a good book for not just parents to read, but educators as well. I'd like to read it from both view-points!

And no worries, ALL children come with some degree of unpredictability and I think most mom's worry about what kind of day it will be when their kids go in front of a group of people to talk or sing, etc. :) I know I do!!!

Sharron said...

You two have been phenomenal parents and Gabriel is one very blessed little boy. All of your kids are. You have not shied from any little problem that any of them have had and they have all benefited by it.

I am also lucky for all that you have taught me so that they can have more consistency in their lives as they spend time at our house.

I love those little guys and consider myself so lucky and blessed to have time with them on a consistent basis.

Liz said...

what an awesome mommy you are. I love looking back in our lives and seeing the Lord's hand.

Anonymous said...

What a great post. It was nice to hear a bit more of your parenting journey. I must also add that I couldn't agree more with you about the YW lessons. I expected life to be PERFECT once I got married. I didn't anticipate struggles. My visions of family life were totally unrealistic. I really wish I had been more prepared for non-ideal family situations. I hope that I'm doing a good job teaching my seminary students to prepare for the unexpected!

NewBini said...

I don't mean to intrude, but I wanted to tell you how grateful I am that you made this post, I almost cried. The first paragraph pretty much sums up my feelings as well. I have a 3 1/2 year old who is a very "intense" child. He also has needed speech evaluation & will be receiving therapy. And while I have not had him tested with an allergist I have noticed that he does well when I limit artificial flavors, colors, sweeteners, nitrates etc...that sounds funny, but I have seen the evidence in my son. Some days I feel as if he is equal to a box of ping pong balls dumped out on a tile floor.. I too am used to the looks and comments "your son was a pill today" when I pick him up from nursery, or the fact that my husband & I have not had a date night in years because thinking of leaving him with a sitter makes us nervous. In the end, so I don't continue rambling, I am excited to read the book you talk about. Thank you.