There are many challenges that come with managing a chronic condition like Autism. The great news is that changing focus could set you off on a whole other meaningful life purpose.
Diagnosis affects the family as a whole but also impacts each family member as individuals. Depending on the character of each person and the attitude of family the diagnosis has the potential to change individuals and families in many positive ways.
Parents may use the challenge of recovering or healing their child as a catalyst to overcome a long- standing issue or fear. For example, a person with a social phobia might be so motivated by the love of their child and the desire to alleviate the stress of living with certain challenges, that the anxiety they may feel talking to other parents is out weighed by the sense of urgency to gain information from other parents. Therefore, they do what they have to do and improve their social phobia at the same time! What a gift!
Parents are also able to develop a sense of expertise in whatever condition their child has.
There are two paths to becoming an expert on any given topic. The first is through life experience. The second is studying it.
The rigorous training that parents go through in living with Autism, Epilepsy, Cancer or any other special circumstances day to day gives them credibility as experts to share their knowledge with others. They can become valuable parts of committees, author books or use their knowledge to help others that have less experience in the matter.
Bearing witness to your loved one can strengthen a caregiver’s belief in The F in BUFFERS “Find something bigger than yourself ”. Watching your child persevere and finally master a task that challenged them for months is nothing short of a miracle. Witnessing these types of miracles time and time again creates a sense of gratitude and faith that would not have come otherwise. These types of miracles remind us all that life is not all about us that we are part of a larger cosmic experience. At the same time we can remember that our efforts are important because we are part of making miracles happen!
Having a special needs child creates a greater sense of awareness for parents and families. If both parent and grandparent are advocating for the same cause it can strengthen the bond among the family and give them an opportunity to spend more quality time together. It also creates a sense of what is important in life. A chronic diagnosis can end long-standing differences among family members and be the pathway to forgiveness.
Chronic conditions can benefit siblings as well. It teaches them responsibility, empathy and tolerance for others. It also models a true definition of unconditional love. My child with ASD loves her sister more than anyone on the planet. She hugs her kisses her and is the first to comfort her when she cries. My child with ASD lets her sister take things from her and never ever holds a grudge! I don’t find it ironic that my daughter that has a diagnosis of Autism is the one to display the truest sense of unconditional love that I have ever seen! I have never experienced this level of unconditional love from a person who is neurotypical, my daughter with ASD seems to be above anything petty! She is the one teaching ME something! I just have to be open to learn the lesson.
The community can be served by the challenges of a chronic condition because it provides the seeds of necessity to create businesses, goods and services to be sold that benefit us all.
For example, ScentsAbility, a candle making company in Florida was created by the parents of a special needs individual named Jessica to give her and others like her suitable jobs and make them productive members of society. All of the candles are made by the special hands of individuals who may have a diagnosis but this diagnosis does not define them! Autism Speaks, the leading organization for Autism in the country was started by Bob and Suzanne Wright grandparents of a child with Autism. Autism Speaks has become a huge asset to the community at large. It has been the vehicle to help many families that are looking for assistance regarding Autism but also had employed many families along the way as well. Many other businesses like Autism File magazine, which was founded by Polly Tommey the parent of a child with Autism has helped many voices in the Autism community be heard. Lynette Louise, the mother of multiple special needs kids has created a business sharing what she has learned to help others and authored a book called Miracles are Made A Real Life Guide to Autism. Connie Hammer a mother of a child with special needs and a social worker has created a business helping parents in her business The Progressive Parent. These businesses have been created from a special needs situation but now serve and aide an entire community of people.
In summary, there are many ways to approach living with a chronic condition. One can choose to see the up hill climb and focus on the fatigue or one can notice that they are getting stronger from the climb and springboard that strength into opportunity. We all get to decide!
There is no worse feeling than feeling hopeless! If you have no hope you can’t move forward.
When it comes to being a caregiver of a child with ASD feeling hopeless is a great way to become emotionally “Checked out” and just go through the motions with your kids. I have done that and I know how awful it is! Lack of hope can take over your whole life and make it so emotionally painful that it hurts just to just be alive!
Wickipedia has many definitions of hope. One of which is;
“The emotional state which promotes the belief in a positive outcome related to events and circumstances in one’s life.” In other words, holding onto to hope can help keep us moving. Eventually it will be in the right direction!
If we are feeling “Hopeless” regarding our child’s situation, on some level that may mean that our level of frustration has gotten so high it may seem that one has lost faith in their child. Remember, even in the most dire of circumstances if improvement is physically possible there is always hope. The question becomes how do we reclaim hope and internalize it to become a legitimate part of our inner fiber? The answer lies in the “U” in BUFFERS ‘Unearth New Territory’! Try something new! There are two ways to do this, I strongly recommend doing both simultaneously. First, to try something new for your child new therapy, a new treatment, new research, a new way or working with them or even embracing a new attitude can change the status quo and improve your situation. Trying something that you have not tried before can shake things up, creating motion in a positive direction. Simply the act of deciding what you will do differently propels you forward and automatically changes your current footing. There is always the possibility that what you are doing just might work! It also made lead to something else even better!
The second way to ‘Unearth New Territory’ is to do something new for yourself! Take a new class, join a club, or do that thing that you always wanted to do! Doing this will improve the quality of your life and bring you more joy! Having more joy and contentment in your own life will bring more patience and acceptance for your current situation with your child. This will help you avoid the emotional roller coaster of trying something new and not having work out as planned. If you operate at a certain level of contentment you will be encouraged to keep trying new things to improve your child’s current condition.
An example of what “Unearth New Territory” for me personally is that I am planning in attending the Current Trends In Autism Conference in Boston on November 9-10.
It is the most recent findings in Autism to date. I am hoping to come away with a new treatment and better understanding of what Autism really is! If anyone else is interested in this conference the link is http://www.ctiaconference.org/
Today is a new day! The perfect day to reboot, take a deep breath and decide to first step in a brand new direction, who knows it could be toward a new life!
As the last part of this series on grief I want to discuss why it is not only normal, but in the case of dealing with the Autism diagnosis letting yourself grieve can be the gateway to hope.
Obviously, when parents are new to the diagnosis there is a great sense of loss, especially due to the fact that the parent is not yet sure how to master the new Autism environment.
Often as a reaction parents go into a frenzy determined to research everything about Autism with the goal of recovering their child within a year. Sadly, this is not always the reality and caregivers may feel as though they failed their child. A variety of emotions from withdrawal to rage may surface depending on the individual personalities and cultural norms of the family.
Depression, self-medication or over-eating, may become a pattern as the families coping mechanisms are tested.
Thomas F. Fischer, M.Div. M.S.A. has a unique perspective on grief. He describes two stages that he calls “Adjustment” and “Reconstruction” these stages occur after the family has sufficiently grieved the experienced loss. In “Adjustment” the family can begin to let go of what they expected and begin to accept the status quo. There is hope in creating new relationships and exploring new solutions. It is also common for new routines to be formed in this stage. Once the family has mastered “Adjustment” they can move onto “Reconstruction”. In this phase the family is motivated by a desire to achieve what Fischer calls “Optimum Functioning”. Many times in the “Reconstruction” phase the family gains confidence in planning and achieving small victories. This can strengthen hope and family moral.
Once the family can untangle themselves from the tentacles of the negative aspects that come with grief, if they choose to they can begin a new life filled with opportunity and hope.
Once a person is ready, a type of “Conscious grieving” can highlight unique qualities about their unique circumstances and present a sense of richness with purpose to life.
Here are some quick tips for “Conscious grieving”
1. Keep a journal and/or scrapbook- Keeping a journal on your feelings. This will help record what your heart is really telling you. Many people going through the grieving process find that writing is a healing tool of catharsis. Sometimes scrapbook and pictures are icons of comfort that can be used in times of sadness. Pictures or words may reveal details that are helpful in providing direction in moving forward.
2. Teachable moment- Be aware of what meaning you can find through your suffering. You may learn a lot about what you value.
3. Spring Cleaning - Times of grief are great for making permanent changes. Take note
of what is or is not working in your life and make adjustments accordingly.
Starting from a place of grief is a start in and of itself. It has no bearing on where you will end up.
Be okay with where you are today.
Once you are ready to take the first step, towards healing please remember the words of Dr. Martin Luther King Jr.
“Take the first step in faith. You don't have to see the whole staircase, just take the first step.”
Elizabeth Kubler Ross is famous for categorizing grief into 5 stages. She states that; “There is not a typical response to loss as there is no typical loss. Our grief is as individual as our lives.”
Grief is your own unique experience. Please care for your grief as you would a small child that needs to be loved and nourished. Feeling ashamed of your grief or not giving yourself permission to grieve will come back around to affect your life negatively in other ways. Your grief has a right to be heard and letting your inner voice be recognized will be the pathway from darkness into the light.
The five stages of grief created by Kubler-Ross are as follows:
Denial- Denial helps those that are in shock and need more time to get used to the news. It is a way of letting the news seep in at a slower pace and only letting in what one can handle. It aides in helping someone function and as the denial is lifted acceptance begins.
Anger- Anger is a necessary stage of the healing process, the more a person gives themselves permission to be angry, the sooner he/she can begin to deal with the underlying pain. At times anger can be used to hold onto the past or circumstances that they wish existed. Do not fear your anger. Welcome your anger and your pain. It is expression that you love your child.
Bargaining-Bargaining involves making a deal with the universe that if they heal your child you will never swear again. It takes the form of a special arrangement with a higher power, but it is filled with “only ifs” or “could of”, “would of” and “should of”. It usually involves feelings of guilt or taking responsibility for something the individual had no control over. It is also a way to stay connected to the past.
Depression- As the present situations begins to settle in, it is not uncommon for overwhelming feelings of sadness to accompany an uninvited reality. Becoming withdrawn, dark thoughts, decrease in functioning, confusion and wondering are all normal reactions to abnormal situation. Signs of depression are natural when faced with an overwhelming circumstance such as an ASD diagnosis. These symptoms can take time to resolve themselves. Please do seek a mental health professional if you feel as though you are at risk to harm self or others or you feel as though you can’t function enough to care for your child.
Feelings of sadness and depression are normal. Please be patient, these feelings do get better.
Acceptance- Feelings of acceptance don’t necessarily mean that everything is “Ok”. Acceptance is about learning to live with the new normal. This may involve some life adjustments or changes in family roles. Please be mindful that other members of your family may grieving differently than you or be at different stage of grief than you. Autism affects everyone, but may not affect everyone in the same way.
It is normal to experience these stages in any order or more than one at a time. I personally remember cycling through each one over and over. It is normal to come to acceptance and then cycle through again. The levels of grief may be different. I still have days or moments when I go through one or all of these stages. Seeing typical children that are the same age as my daughter doing things that I know my child is not doing is a definite trigger. Although, I may feel pain at times, I have also learned like with typical kids, it never does any good to compare. I have also decided to cherish the miracles of all that she has accomplished and celebrate those. Once you see all the hard work that has come from your child’s seemingly small steps, it is easy to realize that they were not small steps at all!
May you look past your pain to the wisdom that lies just behind it.
When you first hear those words, “Your child has Autism.” terror runs through you. You are numb and dumbfounded. Then you begin to notice nausea and trembling have taken over. The full impact of what is going on has not hit yet. As the dust begins to settle; however, you realize that you are grieving.
There is no time to grieve! There is too much to be done! There are doctor appointments, early intervention, Autism research, other children, dinner to make, laundry, etc… I can’t believe you actually are making time to read this post!
Yet when you least expect it, like a sneak attack out of nowhere the grief comes back and grabs you. Stopped cold in your tracks, sobbing, feeling decimated wondering where your baby went! There it goes again! A flashback of the life you thought he or she was going to have, laid out in front of you. There is your child playing football, basketball, soccer, tennis, winning the big game, or playing an instrument in the band, singing in the choir, art lessons, having friends, a first kiss, going off to college, having a wedding, having children of their own, here it is playing out in front of you like a movie. You don’t want to look it is too painful, but you just can’t help yourself. You reach out to grab it to hold onto it one more second and whoosh it’s gone it slipped right through your fingers. What are you left with? A shell of the hopeful dream you once had. Don’t worry help is on the way. To quote Tom Cruise in the movie Jerry McGuire, “Help me help you”.
All you can do right now is grieve the death of the child that you thought you were going to have. As gut wrenching as it is, that is exactly what you should be doing.
According to ‘The Social Readjustment Rating Scale’ Thomas H. Holmes and Richard Rahe, “Death of a Family Member” is number 5 on a scale of 43 items. Even though there was no physical death in getting the ASD diagnosis there is a HUGE emotional death that families have to come to terms with. The expectation of the life they were anticipating has changed. It is important to acknowledge this over time. Moving on can take a while.
Items 1 through 4 on the Holmes and Rahe scale of seemingly higher levels of readjustment are:
1. Death of a spouse
3. Marital Separation
4. Jail term
Personally, I feel that items one through five are equally stressful. I am pointing this out because after parents receive the ASD diagnosis the internal stress is present at that level; however, the level of recognition from the external environment (parents, friends, co-workers and family) is not regarded in the same context. What needs to be communicated to people around us, is that what the ASD community is feeling mimics these other traumatic life events. I hope this explanation brings new patience and understanding to what ASD families may be going through.
I am inviting parents to grieve and take ten minutes to give themselves permission to feel what they are feeling:
· If you are sad, try to feel sadder
· If you are angry, focus on that anger
· If you need a day off to re group, take it
Once you can work through and process your emotions to a certain level you can begin to develop a new dream for your child. A little kindness and compassion to yourself and your child with ASD will go a long way! Stay tuned for the next steps in this series.
*If you are feeling harm to self or others or need personalized attention please seek counseling or other emergency assistance.
I am forwarding this link regarding GMO (Genetically Modified Organisms) vaccines! I am not trying to start an ASD vaccine debate. I do not want GMOs or any other potentially harmful additives in vaccines. According to the video in this link Vicky Debold Phd., who is the Director of Research and Patient Safety for the National Vaccine Information Center (NVIC) is being interviewed by Dr. Joseph Mercola a well known public safety and health expert. In this interview Dr. Debold mentions that the hepatitis B vaccine, which is given the first day of life has contained GMO material since 1999!
My daughter who was born prematurely and weighed just over 2lbs at birth was given that vaccine! My daughter has ASD. Coincidence? Until it can be proven as a fact, which may already be the case I have my suspicions about this and a few other environmental potential hazards! We need to wake up and say NO! WE ARE SUBJECTS OF EXPERIMENTATION! PLEASE READ THIS FOR YOUR SAKE AND THE SAKE OF OUR CHILDREN!
Thank you Dr. Mercola and Dr. Debold for the education.
By the way if you do not know what a GMO is it stands for Genetically Modified Organism and without your knowledge and consent you are eating them everyday!
Basically the plant is altered at the cellular level, it is a type of cloning!
There is much controversy on GMO safety and whether GMOs are tested at all.
Please log onto to The NON GMO Project’s website www.nongmoproject.org
in order to protect yourself from eating them as much as possible!
Please be informed about GMO vaccines! You can also get more information on the National Vaccine Safety website www.NVIC.org
Please advocate of our safety and at the very least stay informed!
Thanks for listening!
I am dedicating this blog post to Jacqueline & Christopher Laurita of The Real Housewives of NJ and all of the newly diagnosed parents out there.
Here is my Top 5 Things Every Newly Diagnosed Parent Should Know
My heart was on the floor in pieces last night watching the Real Housewives of NJ when Jacqueline Laurita began to sob for her precious son. I am sure that I am not alone when making that statement. Those of us with children on the spectrum have all been in that horrible position. Our children are physically in front of us but yet, he/she has been kidnapped. Stolen away from us right under noses. We shared a “collective grief” last night wondering what has happened to our missing angels.
We are left with the pieces. We spend the rest of our lives trying to put them back together again piece by piece. We know that our kids will never how they once were. We are ASD parents, the toughest parents known to man! We adapt, we overcome and we use our challenges to strengthen us!
In light of what occurred last night, I want to send out a blog post to all of the newly diagnosed parents! Welcome to our club we always accept new parents with open arms!
1. THE KIDS DO IMPROVE- I remember in 2003 when my daughter was first diagnosed that I wanted to throw every therapy at her. I was convinced that after a year or two or three of therapy she would be recovered and Autism would be a thing of the past. After years of treatments she still has the diagnosis of Autism but she is so very much improved! This happened in baby steps. The same way that your hair grows, but you never seem to notice that it is longer. The kids that I know have made leaps over time. Please keep in mind that the kids DO IMPROVE and stay strong, but please be patient.
2. CHANCES ARE THAT IF YOU INVESTIGATE ANY UNDERLYING MEDICAL ISSUES THIS WILL LEAD TO MUCH OVERALL IMPROVEMENT- Please let me be clear. Some kids with ASD have clear gut issues and inflammation. Other kids don’t seem to have as much of a medical piece. It is my opinion that every parent owes it to himself or herself to have their child tested for allergies and gut issues. I will speak for myself. In my case, my daughter suffered needlessly for 8 years with both environmental and food allergies as well as other types of inflammation. She would lay in bed and cry and scream every night. Many times ASD kids scream and have behaviors because they are in pain! Finally, when my daughter was eight the results of an endoscopy revealed she had been suffering from a condition called Eosinophilic Esophagitis AKA “EE”. This is a serious condition that results in inflammation of the GI tract. We put on her a specialized diet, put air purifiers in our home and placed her on allergy medication. Once I was able to get a handle on her gut and environmental allergens was she more open to learning and more improved. Additionally, we recently purchased noise-cancelling headphone, which has reduced her negative behaviors substantially. A large majority of people with ASD report heightened senses.
3. YOU ARE THE QUARTERBACK
There are many well-meaning professionals in the “Autism” world. How do you know who to listen to? It is overwhelming to the point of being paralyzed. At the end of the day YOU are the expert in your child and the leader of his or her treatment. NOT the school, NOT the pediatrician, YOU! I know that you may not feel that you know what you are doing but if your gut tells you to wait, wait! You can always go back and try something else or change the game plan at anytime. Your child needs you to advocate for them and nobody is more committed to that than you. It is also in your best interests to know what may or may not be happening with your child and what life may or may not be like for them. I am going to recommend some books that have helped me:
· Healing and Preventing Autism by Jenny McCarthy and Jerry Kartzinel, MD. This book was does an excellent job of explaining the physical symptoms of Autism in a way that parents and caregivers can understand.
Carly’s Voice Breaking Through Autism by Arthur Fleischmann with Carly Fleischmann.
Arthur does a great job of telling the story of what a family goes through when a family member is on the spectrum. Carly who is diagnosed with ASD explains in plain terms what it is like to have Autism and what she goes through. A MUST READ!
The Autism Revolution by Dr. Martha Herbert.
She comes the closest to understanding Autism from the medical perspective. A great resource.
This is only my opinion but I think these three books capture Autism in a nutshell and will provide you with a solid foundation of information. These books have been very helpful to our family.
4. MOST ASD PARENTS ARE GREAT! YOU ARE NOT ALONE!
Having a child on the spectrum automatically bought you a ticket to our “club”, which means that most of the time another ASD parent will be there for you no questions asked to support you and give you their best tip! It is the silver lining on the dark cloud. We are all on a mission of a higher purpose; this does not leave time for gossip and other negative activities. We know that on some level we are all for one and one for all. ASD parents to date have made enough noise that we finally have the medical community researching finding bits of evidence to help support our efforts. ASD parents have no hidden agenda except to help each other re-capture our children. Please use other parents as a resource it is the best and quickest way to get information. Please remember we are all behind you and you are NEVER alone! I personally would go out of my way in a hot minute to help another ASD family!
5. AUTISM IS GOING TO CHANGE YOU. HOW IT CHANGES YOU IS YOU IS UP TO YOU.
Autism changes everybody it touches. It has the power to decimate you financially, socially, mentally, emotionally and physically. Please always remember this diagnosis can’t destroy you without your permission! You will go through stages and have a range of emotions. THIS IS NORMAL!
Autism is making a life-long commitment to you and your family. Autism will be faithfully by your side 7 days a week 24 hours a day for the rest of your life. You get decide the role this newest member of your family will play.
Take things slow and on your own terms! This is a marathon not a sprint and as I stated before, you are in charge! When my daughter was first diagnosed, and for many years after, I was intent on “fighting Autism!” Fighting gets exhausting! Please don’t waste time “fighting” Autism. TO BE CLEAR, PLEASE DO EVERYTHING TO RECOVER YOUR CHILD FROM AUTISM, but when you are ready you are going to have to EMBRACE AUTISM on your own terms. That means deciding exactly how it is going to affect you! This process is an evolution that ebbs and flows over the years. You may feel that Autism is a “lemon”; however, eventually you will make “lemonade”. How sweet it is depends on you!
Please always “BUFFER” yourself!