Throwing Parents a Life Preserver

Throwing Parents a Life Preserver

In San Jose California in March 2012, a mother of a child with autism shot her son and then herself

I wrote this piece that evening

WHERE Were We? (A professional’s introspection on that awful day)

I shot my son with autism and then I shot myself

How did we fail this mother? How did we fail this mother? How did we fail this mother?

I cannot get this thought out of my mind

Where were we? Where were we? Where were we?

When she reached out for guidance

When she requested

When she asked

When she searched

When she connected

When she pleaded

When she hoped & perhaps prayed for just one solution

Why did we not see?

Her frustration Her anguish Her desperation Her pain

Her hopelessness

This is 2012!!!! PEOPLE

We have IDEA, ISP, IEP, ITP, IPP FAPE, 504 plans, Workability Services, Department of Rehabilitation

We have Regional Centers & a Department of Developmental Services

We have millions of web site addresses focused on autism resources, training and information

We have The California Senate Select Committee on ASD

We have family support groups (PHP, MATRIX, FEAT, TACA, Support for Families and more…….)

We have a plethora of specialists (MFT, SLP, PT, OT, Education specialists, psychologists) all claiming to understand and support

Where were we?

Did we not listen to her story, her needs?

Did we not see her anguish, her fear?

Did we not feel her hopelessness?

Did we offer her anything?

WILL YOU DO Something Different next time?

I know I will try harder

After this awful incident a mom suggested that I needed to write something about helping the parent who can barely keep their head above water. She thought I might have some helpful suggestions.

So, I thought, if I was a parent of a child with special needs what would I try to keep my head above water.

  • First I would wake up each day and light a candle or incense stick and ask for the ability to be grateful, patient, wise, and forgiving
  • Next, I would find a group of “Sisters” who shared in this new adventure I was on (Dedicated To Special Education in Marin County is such a group) and become an active participant
  • I would then educate myself on my son or daughter’s challenges and STRENGTHS in order to interface and collaborate with the education and medical community that will end up offering interventions. I would practice accepting my child for who he/she is and not what I hope he/she might become.
  • In California we have parent networks (Parents Helping Parents, Matrix Parents Network, Support for Families) and disability rights advocates available to offer face to face mentoring and information on how to work with our school systems. These family networks provide resources and first hand experiences working the systems that support special needs.
  • I would work on giving myself permission , probably on a daily basis, not feel I have to have all the answers at once and do everything all at once and be everything to everyone (husband, child and siblings)
  • I would reach out to my friends and close family members and explain to them who my child is, how I am feeling and explain to them how very important they will be in my life as I move through this path and how I hope they will be available to me
  • I would work really hard on giving myself permission to find time for developing my own interests and taking care of my own needs (this factor truly depends on the financial position, the number of kiddos in the family, family support and the careers each partner had prior to bringing a child into the world). I would work with my spouse/partner and try to develop a plan where we each have time to develop individually.
  • I would find a counselor who specializes in helping families deal with loss, yes loss, because I feel that there is an expectation with each birth (ten toes, ten fingers) to create the perfect individual, mentally, physically and emotionally. When this does not happen often the dreams the parent has for their new child cannot be realized. There is a loss. I would find someone who can help support the idea of life after the diagnosis. There is a wonderful life coach, Diane Hunter of After Autism, who is helping families in the San Francisco South Bay Area, realize there is a life after you hear your son/daughter has Autism.
  • I would give myself permission to take time with my other children giving them the one on one time to just meet their needs. If I thought a sibling group or counselor was needed I would explore that as well
  • I would try to develop a group of baby sitters (Bay Area Respite, Regional Centers,, La Chris Connection, Lorna Catford at Sonoma State) so that my husband/partner and I could have time together. I would give myself permission to have a real relationship with my partner/husband. I know sometimes dates might be broken, but I would try consistently.
  • I would connect with financial planners who specialize in special needs financial planning and trusts (Daniel Cutter, Merrill Lynch Special Needs Group) and begin step by step to plan for the future of my child with special needs
  • I would develop a 3 to 5 year plan and re-visit it frequently when it comes to preparing for each stage of my son/daughter’s life. You see, the IEP is yearly, but I know that it is truly important to keep an eye on the future as well. I think it is late at age 16 to begin to think about transition planning. I suggest you think about that at middle school for sure and make sure goals are addressing those issues at least by middle school.
  • There are all kinds of books written by parents that provide tips and suggestions. Check out Future Horizons Publishers, Amazon or Jessica Kingsley publishers. Many parents feel that the most important advice comes from someone who has been through it. So I will probably read some of these books as well as connect through the internet. Check out authors like Kara Barber, Martha Beck and Laura Shumaker (parents who have taken time to write about how they lived with a child with special needs).
  • I would learn to be the best advocate for my child as possible. I have seen where those parents who are well versed on their child’s strengths and challenges, those that understand how the systems work, those that can calmly and professional and collaboratively communicate with the educational, medical, therapeutic communities are the ones who receive the services. I have accepted that this is the way it is…so like learning the game of chess….I would learn all the basic rules and then I would learn every possible strategy for playing the game to win.
  • If I had become a parent of a child with special needs, my life would have been different for sure, but like today, it would have been comprised of the choices I made along the way. It would have been developed by the opportunities that showed up before me.
  • I am the mother of three young men and my life is different because of them. I have done the best I could with the choices I made and the opportunities that came before me on this adventure with them. I still light my stick of incense each morning and identify what I am grateful for as well as ask for guidance in making wise decisions. I try and let go of anything that does not serve me in a positive way and I work on being patient every day. By the way, I also ask for PROSPERITY and play Mega Millions and Super Lotto!!!

I do not have the answers to why this mom in San Jose, California shot her son and then herself. I have been told by other moms they too have felt depressed about their child’s condition and that they had thoughts of taking their life or both their life and their child’s. This actually surprised me because these moms seemed so together.

So, I can only wish for parents to reach out and tell someone they are hurting, feel a sense of hopelessness, and see no solutions.

I can only wish that friends, family members and professionals of these desperate parents reach right back and help them see other choices.

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