Polly: Often the struggle to take care of an autistic child is overwhelming. Sometimes there comes a point when the parents must face the fact that everything they have tried has not helped. Yet it is so hard to give up hope and trying. Not everyone can do that. No one should criticize a parent who has tried and failed at this enormous challenge. Also, no one should tell parents that there is no hope, because there are cases where gradual progress has been made, and people have gotten their children back. Kathy is a fortunate mother who has seen progress with her autistic kids. When told to stop talking about so many holistic interventions and to just accept her sweet angels for what they are, she could not agree to do so.
Kathy: Many of us believe our kids were perfect when born and something happened afterwards (vaccines, environment who knows?). There are others who know there was something different at birth. It matters not WHEN autism occurs, only that it is here, and what are we going to do about it? Is it an attitude adjustment, a blessing, a challenge? No matter what, it takes a lot of faith and courage and help from others who have gone through it, to get through it.
Whether there is something viral, structural, metabolic, endocrinological, or immunological, this is something that has increased in epidemic proportions, and I frankly want this to cease in our generation. Notwithstanding, the greatness of their spirits is unquestionable and truly deserved. I believe that autism is not spiritual, it is a temporal, temporary state in which these kids have been “assigned” so to speak. I think God gave us brains, and the ability to heal diseases and “states.” It is our personal responsibility and our stewardship to find these answers for our children, to make their lives more pleasant and more livable, and to help them to be more accountable, more productive, more able to take care of themselves. If that doesn’t happen, don’t think for a minute that in this journey I have not “accepted” who they are, and what they have taught me. There is not a difference or spectrum of my love and compassion for both!
I know this will be hard to hear, but let’s put this on the table…. I have “healed” my son from a metabolic disorder and epilepsy, ASSOCIATED so often with autism. I have also increased both my children’s immune panels to normal reference ranges. Their gastrointestinal health is the best ever. I have been able to take aides off one child, and make the other child more independent. Hope and salvation, if you want to call it that, can turn into despair and loss, if the nutritional problems in the child are not counteracted BY THE PARENTS. Our children do not reach for the DMG and they do not reach for these things, because they CANNOT COMMUNICATE their needs.
If research accumulates in a certain area that I feel addresses my children’s problems, should I just stand still and not venture? Sometimes, I do. Sometimes I don’t. It depends on our families resources, strength, will, courage, and frankly, money! Every Mom knows their kid’s constitution, their weaknesses, but your list invites me to encourage and applaud the weaknesses, to not invite out in any form (Facilitated Communication or speech) my children’s true “voices”. My children both expressively and by FC (Facilitated Communication) have communicated “I HATE AUTISM. I LOVE ME, BUT I HATE BEING SILENT. I HATE NOT BEING ABLE TO UNDERSTAND PEOPLE. I HATE BEING FRUSTRATED. I HATE BEING SILENT. I HAVE SOMETHING TO SAY.”
How long do you want to prolong their prison sentence? If you do not allow others to express “what has worked” for their children that is what you do. Do you know what my higher functioning child says? She says, “Tell them, Mom, I can think really clear now. Tell them I can speak with my own voice!” Put yourself in their shoes for one moment. If you had a time in your life where you were able to speak, and to think clearly, and someone took that away, how would you feel? Frustrated, angry? No wonder some of our kids have behavior problems! If you really thought about it further, even if they NEVER talked, NEVER developed, do you give them any credit that deep inside, they feel, think and want their needs known? I frankly view them as “stroke” patients, who have it upstairs, but cannot communicate these truths to you.
If I “spin my wheels” all my life in my pursuit to find answers to autism, I think I have fulfilled my stewardship as their Mom and provider. Spinning wheels still gets you something in return, and yes, patience is a virtue. This is also part of the journey. This is part of the no pain, no gain part of autism. What your list asks of me, is to not obtain these higher ideals for my children, to view them as creatures from another planet, or angels so speak, and to put them on some kind of spiritual pedestal!
If you think me unfeeling, think not I have not cried an ocean of tears for them. I think they have earned the right for something better than that. They are children with a brain disorder. They are children who have fungal and yeast infections. They are children who have been damaged by vaccines. They are children who have metabolic, viral, and immunological problems. I think it is not strenuous or a stretch to say, that they are challenged to be sure, but they are just like you and me. They have a better future that may be obtained for them when we do not give up hope!
I will not miss a list that tears these beliefs down, telling me I don’t “know what I am talking about”. Indeed, I do. Let us not quantify or compare our love for our children by the extent of how “special” we feel they are. Let us not tear down someone’s belief system for the purpose of appearing more intelligent or researched. Let us not insulate our fears by acceptance of these kids “as is”, and reject every biomedical treatment simply because we have made up our minds that we cannot change autism. Let us not close the doors on options until we have fully explored them. Let us at times take Faith as our course, rather than scientific double blinds. Let us not determine another’s opinions are not valid, for we have not walked in their shoes. Let us not place blame, but let us rather speak our minds, our heartaches, our beliefs, our sorrows with one another, and so fulfill our duties as mothers and fathers of these children. Let us not have our children fall into the abyss of our guilt, our denial, and thus disregard that “we can do something about this”. Notwithstanding, let us understand the excruciatingly painful ordeals that children and parents have been through while they search the ends of the earth for treatments that will relieve their child’s suffering. A simple fatty acid supplied, a manipulation, a simple dietary change, a change in grossly hindered diets, does not amount to non-acceptance of the fact of autism. If I meticulously ensure these small (and sometimes difficult) changes, I ensure that they continue to progress. Progression can erase the undercurrent of pain, and the fear of autism.
I plead guilty of trying to help my children to be “all that they can be”. Many doctors clearly lack the knowledge of how our children’s bodies work. Their behavioral problems often are the results of organic troubles in the brain¾and those may well be because of malabsorption problems. Having that knowledge, any time a Hope for Autism through Nutrition The Health Forum—Book 5 56 doctor cannot speak, walk, or talk the language of this parent of an autistic child, I say, “GOOD BYE, SEE YA”. We do not know all the parameters of health in autism yet, but I know this to be true: given the right foods, the right combinations of supplements, fitted to the distinct problems of an individual’s spectrum of autism, we can combat the forces that make our children autistic.
Do you think I just woke up one day and said, “I am going to be super mom?”. NOPE, NADA. I cried, and painfully tried, and tried again when there was not strength in my body to do so, and yet, I still ventured. I have been through this now for 18 years, and am still learning, still addressing some same issues, but I shall never, ever, ever give up!