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When I talk to people about Jack-Jack and the progress he has made, there are 3 things I credit for where he is today. He is 12 and talks, and is learning to read, write, and how to behave in society. He continues to make advancements every day.
I meet people each week with younger children. When I tell them that Jack-Jack is homeschooled and doesn’t go to therapies, they want to know what I have done. Because at 4 years old Jack-Jack was not talking, and he hit, bit, and pinched (all the time). He screamed and had meltdowns day and night. And just like every mom, I longed for him to say my name, to say, “I love you Mommy.”
LIFE WAS CHAOS – and people don’t talk about those parts of their life. It makes other people really uncomfortable and nobody knows how to respond. But Jack-Jack was sweet and loving and caring. I knew that he was a great kid. I knew there was a way to reach him and help him. And I knew that what many “experts” were saying was not what I was willing to try.
So this is what I did try:
1) LOVE – I know that sounds crazy, but I believe Love is the answer to a lot of problems. And I believe the best way to show love is by praying. I prayed like crazy for Jack-Jack. I had others praying. I prayed without ceasing. I prayed over him so he could hear. I wanted him to know that he was worth my time and effort. I told him I loved him. When he was having a meltdown or a bad day, I wrapped my arms around him and held him tight. Weighted blankets are all the rage, and I am sure they are wonderful. Melissa and I became his weighted blanket. I know that is a tall order for most people, but when he was hurting and needed something, I wanted him to know he was loved. I wanted him to feel that love and understand it in a real way. And he didn’t always like to be held, but I held him anyway.
I would walk in the room, and he wouldn’t look up. But I still talked to him. I asked him what he was doing. I answered the questions for him. I continued to talk to him without getting answers. Because I believed that one day I would walk into a room and ask, “What are you doing?” And he would look up at me and say, “I am playing with Mr. Potato Head.” And one day that is exactly what happened. But walking in a room and talking for both of us was discouraging day after day. And I found encouragement and love within the Bible.
I believed God’s word, studied God’s word, and prayed God’s word over Jack-Jack. And God so loved the world that he gave his only son, that whoever believes in him would not perish, but have eternal life. I believed those words. I believed that God loved me and sent his Son. And because of that I needed to show God’s unconditional love to my son. I also believed what God said about healing, and I prayed those words over my son.
2) SUPPLEMENTS: I began to study and research. After finding some information online, we cut out gluten and dairy. Both diets showed little to no improvement. We tried speech therapy which just frustrated Jack-Jack, and we saw absolutely no progress for the 10 weeks we went. In fact, the only thing that came out of it was that we were now told he needed occupational therapy to “navigate his environment, and keep him safe.” This was due to the fact that at 5 he couldn’t button a shirt. But he had no trouble navigating his environment and had never exhibited any large motor delays. And the small motor delays I knew could be worked on at home.
We promptly ran out of there and didn’t return. I looked at Jack-Jack’s symptoms and tried “mapping” the brain. I found the areas of the brain that weren’t “firing right” due to his symptoms, and what supplements would help, but I was just guessing at it all. I did realize that his Vitamin D was lacking (due to the absence of the sun in Ohio). So we started him on Vitamin D. He started to sleep a little better, but I was missing a key component.
Up to this time the only thing my pediatrician had recommended was speech therapy. Had he recommended anything, we would have tried it. I would have done the Hokey-Pokey and turned myself around if I read an article about it. And then I heard a speaker talk about supplements.
I went to a conference and the speaker talked about her adult son and his autism. She recommended some supplements. Jack-Jack wouldn’t swallow any pills, and he still doesn’t. We snuck them into food. These are the supplements we started. Before starting any supplements, please check with your child’s doctor. Our doctor was on board with what we were using. We also started things in stages, waiting a week between adding a new one (Vitamin D3 and Magnesium were started together).
Vitamin D – these are chewable, lemon flavored. Jack-Jack takes them without any problem.
Magnesium is necessary to properly utilize Vitamin D. We found a spray. When using this spray, sometimes light itching occurs at the area that the spray was administered.
Vitamin D and Magnesium help with sleep. You need proper amounts of Vitamin D for a healthy thyroid. Magnesium also helps with anxious feelings, irritability, memory problems, and a host of other issues.
We then started Acidophilus and Grapefruit Seed Extract. The recommended doseage of the Primadophilus is 1 capsule 3 times a day. Since we cannot get Jack-Jack to swallow these, I open Primadophilus and Grapefruit Seed Extract capsules and mix the powder with Nutella. I spread that on a cracker.
Grapefruit Seed Extract: 1/2-1 capsule 3 X a day.
We have used these for years. When we stop for any length of time, we do see some slight regression. The above supplements helped Jack-Jack with the hitting, biting and screaming. When he regresses, he doesn’t begin to bite or hit, but he definitely has more meltdowns and episodes that deal with control issues.
We have used other supplements that have helped, but for one reason or another we do not use them on a regular basis – trouble hiding them in food or Jack-Jack’s refusal to take them. I will write more about those in another post.
3) WE CONTINUED TO DO EVERYDAY THINGS – The third thing that I believe helped with the refusal to avoid public places. Since we had older children, we were forced to continue to live a somewhat “normal” life. That does not mean that we didn’t feel that life was horribly out of control. We experienced chaos on a daily basis. BUT we continued on with normal life activities.
Schedules were hard to keep. When Jack-Jack was 3, our children were the following ages, 19 (in college), 17, 14, 5 and 3. Our son in college lived at home and had a different schedule every semester. The days he was home changed, his work schedules changed, our 17 year old son worked and had a varying scheduled. Jack-Jack had to learn to adapt to people coming and going. Tuesday looked different than Friday, and last week looked different than this week. It bothered him, but I think in the long-run, it helped him to adapt to life.
Vacations were still taken. On one trip to Walt Disney World, we visited the Hoop-Dee-Doo Review. I spent almost the entire evening in the bathroom or outside. Jack-Jack hated the music and the loud noises.
We still attempted to attend church, but some weeks it was just easier for someone to stay home with him. Today we go to church most weeks, but we don’t always sit in the service.
We still took him to the grocery store. It was torture for everyone, but the constant exposure eventually made things easier for him and us.
We didn’t have a set schedule, a set dinner time, a normal school schedule, or normal grocery store day. In 12 years Jack-Jack has had to adjust to 2 brothers getting married and moving out, having 4 nieces, his sister going to work everyday, his favorite cousins moving away, animals dying, Dad’s cardiac arrest (read more), and more life changes. His only constant in life was our love for him.
I have read stories of children that need to adhere to “the schedule” or their life falls apart. A changing schedule doesn’t phase Jack-Jack anymore because that was his normal.
I don’t know if one therapy works better than others. The problem with autism is that what works for one child, may or may not work for another, and since every child is different, some children may actually do worse with some therapies than other children.
But I do know that Jack-Jack has exceeded our expectations. He talks, he is reading, and he is a happy-go-lucky young man with an occasional melt-down. We do not know what the future holds, but we believe in a bright one for Jack-Jack.
Bringing you hope for the future!
Romans 12:12 “Rejoice in hope, be patient in tribulation, be constant in prayer.”
Patty @ A Mother’s Random Thoughts