I've finally worked up the nerve to re-live Grace's story. Her story started out much the same as Tony's in that she has lots of allergies at the beginning of life. She reacted with hives to the hospital Pampers and had random hives during her first year. We treated her as though she was allergic to dairy and avoided it on principle. However at a church function when she was 6 months old, a well meaning person gave her a Cheeto while I was not looking and she immediately started reacting with anapylaxis. After that, we made it clear to others around us that she was not to be fed anything that did not come from us. We continued to let her go in the nursery but it was spotty attendance there at best as I was uncomfortable with the lack of consideration on others part (see my nursery problem with Tony in the beginning of his story and you'll understand) and she was a really quiet baby so she was no problem to tote around with me.
Around 9 months of age, she got a huge amount of immunizations and immediately stopped growing. I know, I know, vaccines don't cause autism. I've heard that a million times too. Doesn't make it true though. Anywhoo... she stopped growing, she stopped making baby noises, she stopped everything - literally. Her eyes stopped changing color (they were in that changing color mode when this happened), she got a terrible vacant look in her eyes and she got VERY lethargic, unable to do much for days at a time. She lived on my hip most of the time and I have to say I enjoyed her being there. She loves to just suck her thumb and twirl my hair. And that's what she did for two years. She was so delicate and fragile, people often commented that she looked like she would break.
Her cognitive skills would come and go. It was very weird because some days we could see she understood us but other days there was just no comprehension when we spoke. Woody & Buzz Lightyear became her everything and Tony was her sole playmate. As I mentioned in Tony's story, they just kind of went away together into their world, leaving us lonely and wanting. Doctors told us it was just their allergies and their social isolation. But Grace would often lay around for days at a time (once I couldn't tote her around on my hip all day), but these times of lethargy were always followed by wild and lunatic behavior. She would twirl and twirl and twirl (ad nauseum) on her sit and spin, jump up and throw herself against furniture or the walls. It was very disturbing b/c we could NOT stop her! I mean, we could physically restrain her but she would be wild in our laps and just completely out of control... scary what power a 3 year old has when they're like that.
As time went on, these bizarre behaviors continued and we didn't know what to do. It was perplexing because when we moved from Texas (when she was 2), she did start talking, but it was all nonsense. She would echo what she heard and could parrot well enough for others to think she was adorable and b/c she was so tiny (remember she stopped growing at 9 months of age), people thought it was appropriate for her to babble or speak nonsense. But we knew better. She should have been speaking in sentences by this point but the only sentences she could say were the ones we had given her. Original thoughts did not come out of her mouth although I am certain they were in her head. Her tongue was completely coated white and she was diagnosed with geographic tongue (warning: gross pictures on that site). We later learned this was from the raging yeast infection in her blood.
She also had NO fear whatsoever and would run off if she saw something interesting. Not running away maliciously but just appearing to forget she was supposed to stay with us. We learned very quickly to keep our hands on her at all times. Many grocery trips landed her in anaphylactic shock b/c she could not keep her hands off the groceries. After a few of those trips, we stopped taking the kids to the store and Daddy and I would take turns doing the shopping. It was just too dangerous to take her any place we couldn't make safe for her.
Tony was a great big brother during all this upheaval, in spite of his own problems. He did love Grace with that unselfish brotherly love and was her best protector and advocate. The only time she was without us was during church (after we changed churches) because the nursery was safe for her there. He was her mouthpiece there and everyone looked to him to keep her safe away from us. People kept forgetting that she couldn't be trusted though and she had alot of accidents and anaphylactic incidents in there as well; always when Tony was out of the class with the bigger kids. I can still see in my minds eye, holding her down with all my might to stick that epipen in her leg. And I can see her fighting me with all her might, which is quite alot when it's terror driven. Twenty pounds of 3 year old is alot when it's terrified! On one occasion the epipen didn't work and we almost lost her in the ambulance. Thank God for competent EMT workers!! They saved her life that day for sure.
Life continued to spiral downward for Grace. Her mental absences continued and increased. I'm sure the frequent use of epipens, although necessary and lifesaving, were doing a real number on her adrenals and immune system. Looking back, I can see her behavior was very much influenced by her food. I kept food journals for her when I started on myself and it was very clear that the chronic yeast infections, the posturing over furniture b/c of intense gut pain, the wildness, were all due to foods. And they weren't always food allergies, they were often just foods that fed yeast... such as sugar and gluten. Boy those days were tough as she was my doll baby and could break my heart with a look. And often those sad looks were b/c I was changing her diet and she wanted her old food back.
But slowly and surely, she started coming out of her fog while we changed her diet. It was fun to see that sparkle come back in her eyes. She did have multiple metabolic problems that showed up on tests so we treated those with supplements as needed. At one point we saw she was overloaded with ammonia in the blood... that was scary since people DIE from that! But we treated her with some nutritional supplements and her body got rid of it's excess ammonia load. When that happened, she suddenly had energy like never before; and I mean good energy. ;) Like she could play all day long without needing to rest for three hours on the sofa. The resting for days on end completely ended. Poor little thing, she was so toxic it had drained her ability to function!
We continued to see progress as we treated her with supplements and changed her diet even more. The diet was always the hardest thing for her as she really loved sugar. It was hard to give up and we had to lock things up. Daddy still eats whatever he chooses and one day, it was her birthday if I recall, I woke up early to find both Tony & Grace on the floor of the kitchen, eating marshmallows from Daddy's stash. Daddy's stash had been on the top of the fridge and Tony had climbed up there to sneak it out. He confessed later that he had been doing that for days but had wanted to share some with Grace for her birthday. Sweet but naughty. :) So that day, I called Daddy at work and told him to bring home a locking safe. And he did. lol We locked anything that contained sugar in it away so Daddy could have his own foods without jeopardizing the kids recovery efforts. That was a sweet thing to do; I know many men who will not budge an inch on their own personal comfort but our daddy is not like most men. He had also seen the recovery progress and was not willing to jeopardize it, God bless him!
Once we got all the sugar locked away, we started seeing eye contact return, she completely quit posturing over furniture. She went from not sleeping more than 3 hours a night to sleeping all night. Up to that point, we had trained her to stay in her room and play with quiet toys while everyone else slept. She had a baby gate up and she just stayed in her room doing whatever. If she got loud or out of control, I would go in there and sleep in her bed. She learned quickly that if she didn't quiet down while I was in there, I would leave so she would play quietly for hours with me sleeping in her bed. I remember distinctly her maniacal laughter during the night between spurts of quiet. We didn't realize at the time that this was a sign of yeast but once we started treating her with strict anti-yeast dietary protocols, and giving nystatin and diflucan, these behaviors went away! Sleep is wonderful. :)
With chelation, she was finally able to convert beta carotene... meaning she didn't turn orange from eating that color. Which was nice b/c she looked sick anytime she ate orange food before that. She had alot of toxic metals in her body but it took longer to see improvements from chelation than it did for Tony. Therapy gave her a chance to catch up on all those skills she had missed, but it also brought an understanding of her sensory needs and helped her find relief in that area. I really didn't understand sensory issues for a long time but was glad to have a therapist who did! Grace would spend hours on the net swing and we even bought one and installed it in the house once we stopped therapy. Swinging is a big relaxer for Grace. In fact, when she was a baby/toddler, that was the only thing she would do at the park. We spent copious amounts of time at parks and she would just swing for hours and hours until I was ready to go home. Tony would run off and play wherever there was no one else but she would just stay parked in that swing. I was glad when we found it was her trying to regulate her needs for sensory input because that was an EASY problem to solve. :)
Now at the ripe ole age of 9, she is so stinkin' smart!! No one who knows her now can believe she use to have non-verbal autism; you just can't tell. She communicates very well and has a really tender heart to those who are different. She is vivacious and full of life, her smile is sooo contagious and genuine!! She also wants to be a missionary. She loves Jesus like no ones business. It's my personal belief that when she couldn't communicate, couldn't sleep, couldn't tell us her needs, that Jesus was the one who communicated to her, loved her, gave her what we didn't know she needed. We did our best but we just didn't understand and couldn't always reach her in her hidden (mental) places. I am glad she is with us now in full capacity, but am also very glad that when she wasn't, she had someone who understood her far better than we did.
Medical experts say it's not possible to recover autism. We have living proof in the form of three children, that it IS possible. In my blog you will find recovery stories, along with information regarding health that I have learned over the years. And sometimes just snippets of life to give hope that yes, life can be normal after the hard work is done.
Sit back, enjoy, and be hopeful! RECOVERY HAPPENS!
**Kids names have been changed to protect the innocent and naughty alike. ;)
**Kids names have been changed to protect the innocent and naughty alike. ;)