Loving him is easy, Autism is hard
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Loving him is easy, autism is hard. There are no easy solutions and in our instantaneous culture that is a bitter pill to swallow. I want him talking. I want him sleeping. I want him playing with his siblings. I want him reading. I want him laughing and telling jokes. I want him sitting at the dinner table telling us about his day. I want us to run errands without a meltdown. I want to go to a movie or to church and I not have to strategize an emergency exit, due to disruptive behaviors.
Often parenting a special needs kid is double or triple the work and it is never ending. Itās continual. Itās unyielding. Itās constant. Itās endless. Itās perpetual. Itās relentless. Severe autism is a complex, perplexing condition and you got to be on your āAā game at all times, because the distorted behaviors are never ending and if you donāt stay on top of thingsā¦you soon are left with a big mess.
Ben used to waste so much paper. If he made a mistake he couldnāt use the back side or cut the paper in half. It had to be a completely new sheet of paper.
Now, there have been far worse messes than this pile of papers. I could have taken a picture of the time he smashed a watermelon on the floor and sat on the couch eating the watermelon like a wild raccoon. I could have taken a picture of him eloping from his bedroom window at 10:30pm, so he could go to the neighborās to play on their iPad. I could have taken a picture of him darting out into traffic. I could have taken the picture of the time he dumped the entire bag of cereal on my bed and rolled his body over it. I could have taken a picture of him using high pitched noises while pacing back ān forth for hours and hours. I could have taken a picture of him, getting out of a public pool, pulling down his pants and peeing directly in the pool full of people swimming. To make matters even more concerning, all those events was when Ben couldnāt verbally communicate. He was so impulsive and very unpredictable. So when someone says to me, āYou are such a great mom. There are so many moms who just donāt care.ā I think that statement is very unfair. I think a better statement isā¦There are so many moms that are very overwhelmed and donāt know what to do. The amount of work involved and the lack of education regarding brain development is staggering.
Parents arenāt educated about brain development. Parents heavily rely on outsourced help and over time, especially if goals arenāt getting achieved, parents feel powerless and defeated.
The medical system is set up for parents to sit on the sidelines and watch. Parents do the paperwork. Parents manage the scheduling of appointments and administering of supplements and medicines. Parents are also responsible for the sleep schedules, nutrition, the home environmentā¦typical parent responsibilities, but there is this huge caveat. Your kid isnāt ātypicalā. Your job as a parent isnāt typical. His nutritional needs arenāt typical. His sleeping habits arenāt typical. His messes arenāt typical.
He elopes without a sound or reason. He is indifferent to any kind of discipline used, because his brain canāt remember or process much of what you say or expect from him. Special needs parents are often frozen in time and simply survive or fail completely on their own efforts.
I donāt blame the parents who are just going through the motions. I was once that parent. In 2014, I can remember sitting through an IEP meeting and just thinking, āIf these therapists and teachers canāt get my kid to behave or learn, how can I? I mean we have been doing therapies for 9 years and Iām busting my butt, but his behaviors arenāt improving and he is only getting older. He is 11 years old. He is addicted to that iPad. He has zero internal motivation. We have been conditioned to bribe him with a reward to get him to do the simplest of things. Itās quite exhausting and nothing is improving.
I often think of the bible story of some of the disciples spending all night fishing. The disciples were exhausted, hungry, and defeated come morning. They had been fishing all night and had nothing to show for all their efforts. Jesus stands on the shore, but the disciples do not realize that it was Jesus. He calls out to them, āFriends, havenāt you any fish?ā āNoā, they answered. He said, āThrow your net on the right side of the boat and you will find some.ā John 21:6
Can you imagine what the disciples were thinking. They have been fishing all night and somehow if they throw the net on the right side of the boat there will be fish? Can you imagine how annoyed, combative, and argumentative the disciples must have been, but when they do as they were told, they were unable to haul the net in, because of the large amount of fish! There were so many fish that the other disciples came towards the boat to help. Even with all those fish, the net didnāt break.
If you are a special needs parent and your ānetā is empty, itās time to throw your net out on the right side of the boat. God wants to fill your net, but perhaps he wants you to take a more active role, to reach outside your comfort zone, to trust, and as the net fills up, your teachers, aides, therapists, family, and friends all come to help and pull the net in, and no matter the amount of responsibilities the net wonāt break. God will equip you.
I can think of nothing more, that would please God, than for a family and the community to rally behind a person who has a hurt brain and follow Godās design of brain development. So, what is Godās design and why havenāt we heard about this clinic or programs?
Perhaps you havenāt heard about the Family Hope Center because it has such a very unique approach and doesnāt align completely with conventional medicine. Conventional medicineās current stance is to manage and cope. Conventional medicine wants to be efficient and get you in and out of the office in a timely manner. A parent canāt be educated within those time restraints. Parents need more empowerment. We need more guidance in how to set up a home environment to stimulate and nourish the brain. The Family Hope Center provides that service, you can research more about it at www.familyhopecenter.com
A very important difference from Family Hope and conventional medicine is the focus on physiological growth to wellness. We have to get our kidās physiology at its best, which requires getting oxygen to the brain throughout the day, utilizing nutrient dense foods, and calming the sensory pathways. It also requires organizing the lower brain via crawling on the belly and creeping on the hands and knees. These movements develop the auditory and language pathways. It develops the ability to understand abstract concepts such a time, space, and sequence.
My son would have many meltdowns, because he couldnāt understand the concept of time. For example, He might see a swimming pool on TV and make a noise inferring he wanted to go swimming. I would say, tomorrow we could go, but Ben couldnāt understand what tomorrow meant. He couldnāt understand the concept of time, so usually a meltdown would follow. The concept of time was too abstract and that is why calendars and timers are so helpful for ASD kids. The calendar or timer provides a visual rather than relying on his pons and midbrain within his brain stem to function properly.
When the brain is organized, it can create, empathize, love, build, plan, anticipate, etc. Developing the brain is surprisingly a concise, systematic, and rewarding experience, because frankly, God is an absolute genius. God has engineered the brain to be rebuilt and you begin by building the brain from the bottom-up. Ben has achieved so many things by following a comprehensive, systematic approach to developing his brain.
Talking, problem-solving, listening, following directions are extremely challenging when a brain is hurt. One of my main concerns was Benās lack of internal motivation. Which is the motivation to look nice, have a clean shirt, take a shower, tie your shoes, etc. I wanted Ben to want that for himself, not for a token or a reward. Slowly but surely, bit by bit all of those goals were achieved because we improved Benās physiology and had a comprehensive plan to develop the brain.
(The next few blog posts I will go into more detail on how Benās programs improve his physiology. Each blog post will explain a bit on his respiratory, nutrition, sensory, and brain organizing programs, and their role in developing the brain.)
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Ā© Article, images, videos and all other material courtesy of buildingbensbrain.com