Autism Caregiving: Early Diagnosis & Early Interventions

VeteranCaregiver receives inquiries every month about information and support for military and veteran caregivers also caring for a child with Autism.  There is a great deal of crossover in caregiving with the lack of time, overwhelm, fatigue, concern, and lack of adequate self-care.

We’d like to raise awareness about early diagnosis and early interventions. Timing can be critical in life, and just as with TBI and PTSD, the sooner effective treatment begins, the more beneficial the outcomes.  Earlier genetic testing can provide earlier interventions, critically important for future capabilities and quality of life.  Please seek the advice of your care team with questions about your personal situation.

Autism is the leading developmental disability today, with nearly 3% of the population falling on the spectrum.  While leading experts have yet to find a definite cause or cure, there is help and support available. We recently interviewed Scott Fowler on our radio program.  He is a retired special education administrator, an Autism Subject Matter Expert -- and a parent caregiver of a child on the spectrum.  A common saying is that if you know one autistic person, you know one autistic person, since each are unique.  The radio program is titled More Alike Than Different and is available on Military Network Radio.com (http://bit.ly/AutismEarlyDx).  

Coming soon:  Autism Outreach Network

Autism is diagnosed through often lengthy behavioral observation, with most diagnoses coming between the ages of four and five.  This is the ‘diagnostic odyssey’, referring to the time-span from initial concerns to an actual diagnosis. New technologies now make diagnosis possible through specialist referral to genetic testing from birth forward, which can lead to available interventions at an earlier age, which is an advantage to your child and the family.

Occupational Therapy and Speech & Language Therapy are the two most commonly used early interventions.  Occupational Therapy addresses the child’s relationship to the environment around them and Speech Therapy helps with the range of speaking issues that promote communication. The sooner these services are started, the better the overall life outcomes for your child. 

Parents have highly attuned intuition about their children, and if you have doubts or concerns about the timely development of your child, don’t wait, but talk with your care provider immediately.  Ask directly about diagnostic genetic testing and for prescriptions for both occupational therapy and speech/language therapy evaluations and have them completed.  You are building your child’s care team, and the sooner you act, the sooner your child can realize their fullest potential.

Linda Kreter & the

VeteranCaregiver Team

LEARN: Managing Triangular Communication

This is a practical blog post to correspond with the video of the same name. Learning this skill can make your world much, much better.  It will also baffle your adversaries! 

Do you recall a conversation with one person where a third person inserted themselves into the discussion?  Did you notice that the conversation rapidly became frustrating as your one-on-one conversation became a two-against-one situation with another agenda?  Triangular Conversation is in play... where you previously had a direct conversation.

                          Person 1 <----------------------------> Person 2

Certain people regularly use Triangular Communication as a means of manipulation and control. It's a good idea to manage, alter, or avoid these conversational events.  We see it early in life, when two children playing together enjoy themselves; but when a third arrives, the dynamic may be competitive and adversarial.  This challenging discussion style may be found whenever people communicate.

Triangular conversations have the potential to take on a difficult dynamic and alter the previous one-on-one communication.  If the person is simply nosing into your discussion and offering unsolicited advice, the triangle is merely annoying, but still creates a Villain, a Victim, and a Hero.  If there is a negative intention, you now have a toxic triangle, where you may feel the effects long after the discussion.  In either case, which one do you think you will be?  No doubt, you don't need this in your day!

                                             Villain
                                                             .
                                                           .   .
                                                         .       .
                                                       .           .
                                       Victim   ...............   Hero
                                                       

Learn to recognize this destructive communication style and then intentionally remove yourself from the discussion. This happens among family members, the care team, children, and peers.  Awareness is key.  Once you've recognized the situation as a triangle, extricate yourself, disengage, and then re- engage when you can discuss the matter one-on-one.   

This is a drama you can identify and avoid. 

Linda Kreter & the

VeteranCaregiver Team 

LEAD: Self-Development

Caregivers of all eras say they miss their personal time to learn and remain sharp and inquisitive.  How do you find the time to keep growing intellectually, when caregiving is your priority?

A path of life-long learning keeps you sharper and more engaged, though caregivers often feel too weary or too constrained to begin.  First, know that you are learning each day as you walk this caregiver journey, and the skills you nurture along the way will eventually be clear and valuable to you when you look back.

As you consider one day at a time, begin a mind-shift to seek those small pockets of time that might be possible for you. There are some powerful “time-suckers” in each day, but if you can find even 15 minutes you devote to yourself, you will feel empowered.  Feel guilty?  Try not to, as small bits of respite time improve your caregiving.  There’s a good reason that on an airplane, the flight attendant tells you to put the oxygen mask on yourself before helping others. Yes, there are times this is impossible, but if you make the choice to find that small pocket of time, you won’t be as drained.  Hope is an energizer.

Reading quietly may challenge, but try turning your drive times into a mobile leadership class with an audio book.  That waiting time at the VA?  Listen to 15 minutes of good content or about a topic you care about. Turn your otherwise “wasted time” into a learning university.  You can download audio books free from the public library and listen to 15 minutes of meditation, your topic of interest, leadership or inspirational messages.

Leadership expert, Jim Rohn says that if you spend more time working on yourself than your job (caregiving), that the rest of your life is altered positively by what you've learned.  As you become involved in learning new things, you are also more inclined to talk about them and move outside your personal shell or bubble.  Sharing those thoughts with others spurs engagement and may inspire them to think differently too.  Sharing your new knowledge or perspective is reinforced by voicing it to someone else.  It's growth!

Think of yourself as a hermit crab who lives in a shell that fits his size.  Isn't it time you grew in learning new ways to think, vary your viewpoint, and learn empowering, positive skills - in your spare moments?  Be the hermit crab that grows to need a larger shell and grow during every phase of your life!

Linda Kreter & 

VeteranCaregiver Team

Winter Blahs!

Over the past few weeks I have spoken to a number of families who seem to be struggling in many ways, just to deal with day-to-day life.  One family had multiple health problems with many medical appointments, another had a death which required an out of state trip. Even in my own family we have had various depressing problems.

I went to have coffee with a good friend and I was talking to her about life in general getting harder to deal with.  She looked at me with great seriousness and told me I had caught the Winter Blahs. I laughed thinking she was joking. Well, in part she was but she was also deadly serious.  This time of year is often hardest for families who are caregiving. Getting someone in a wheelchair to hospital appointments can be a nightmare in bad weather. Snow, icy roads and freezing fog combine to make any driving stressful.  Multiple illness in a household causes more stress.  Children can be cooped up in the house with few ways to get rid of excess energy.

I have been trying to think of ways, just small ways, to help get through this part of the year.  For one thing the days of clouds and low light really depresses me so I have switched to full spectrum lights in many parts of my house, especially the lights I use mostly.

I try to find one thing each day to look forward to for myself.  It can be 15 minutes with a good book, a quick manicure or planning my garden for when the spring comes.

 If I have things to do that I really do not want to deal with, I try and do those early in the day if I can. That way they are not nagging at me for hours.

I  get outside in the fresh air even if it is just for a few moments.  I look for joy in small things; an insect creeping up a leaf or a pattern in the clouds (which was always a game when I was a kid). I also remind myself that winter is not going to last and that the sniffles and fog and horrid road trips will be gone soon.

 I get exercise of some sort even if it is with the Wii or the stair stepper. I'll see if I can fit in a new project; being creative is a good cure for the Blahs. Knitting, painting, cooking or sewing are all productive and you can see the results of your work. Right now I am trying to grow some fresh herbs in pots on the window ledge.

Above all the support of friends and family helps. Being stuck together in a small space can make all of us edgy, but  if you can get the family involved with a little planning you can chase away these Winter Blahs.

Women's History Month & Women in Military Service for America

Hi all,

In a ceremony on March 14^th, MG Jimmie O. Keenan, commanding general, U.S. Army Public Health Command spoke about the vital role of women in the military, while spotlighting Women in Military Service for America at Arlington National Cemetery.  Stunning strides have been made in a relatively short time to offer women leadership and crucial responsibilities in the armed forces, including the appointment of LtGen Patty Donoho as the first female Surgeon General of the Army.  Glass ceilings may be broken for good, strong, intelligent women!

During the same ceremony, one of our favorite wounded warriors at Walter Reed, SSgt Stefanie Mason, spoke about the influence of strong women in her life, citing first her grandmother (a Navy nurse), and then her mother, Paulette Mason.  Stefanie, who sustained nine head fractures, TBI, and a severe leg injury in Afghanistan is now hoping to compete in the ParaOlympic Games in London for gold in swimming.  She has come a very, very long way from her Alive Day.  Stefanie credited her mother’s caregiving with aiding her recovery, and also her ability to move forward successfully in her life after her injuries. As you know, as Caregivers, you shoulder not only the physical rehabilitation, but the mental health of your warrior – while also keeping the rest of your life in order as best you can.

Best of all, though, was the recognition during this ceremony provided by MG Keenan to Paulette Mason as a Caregiver.  General Keenan asked first that Paulette stand up in the auditorium.  She then singled her out for her caregiving dedication and commitment with these words:  “Mothers are an integral part of our life, and in the case of a wounded warrior, the role of women with their unique ability to multi-task, to support, and to love is so important.  What is more precious to a mother than her child?  Thank you for sacrificing your daily life to support your daughter and our soldier”.  Similar words would be appropriate for the rest of the spouses, fathers, siblings, and friends who also shoulder warrior and veteran caregiving. 

Please join us in joy that when one Caregiver is recognized, the Caregiver Role itself is highlighted.  We applaud General Keenan for her thoughtful words, Stefanie Mason for her dedicated fervor toward recovery, and we give a special shout-out to Caregiver Paulette Mason.  We welcome writing about any of you who are recognized, and thank you for your continued daily work and sacrifice.  

The article link is below.  You matter.

Linda

http://www.army.mil/article/75741/ 

Caregiving is Not a Competition

Greetings, friends,

Caregiving is one tough job.  It’s not for sissies.  And, you go through so much that many others could not possibly understand unless they experienced it themselves.  There is one thing though, that we hope we might shed light on here, and that is your caregiving is your challenge, and it’s impossible to compare it to another family’s challenge. 

So many of you have spoken or written that “I don’t want to complain when so-and-so has it so much worse”.  Or, “if I have a good day, will it make others feel worse?”  What if you know someone else’s situation is so serious that they might not have a good day for a long time, if ever?  If you are caregiving, there’s a reason.  Please know that it’s natural to make a comparison of situations, but not one that makes you feel badly or restricted in what you say.  If that happens as an ongoing pattern, it might be a good idea to distance yourself from that person. 

We care about each of you going through your days, and we are grateful for the depth of compassion shared here.  It is natural to wish you had different lives.  There are always going to be those who “work the system”.  But the vast majority of Caregivers and veterans are simply trying to make it through their days seeking improvement in quality of life an hour at a time.  And, at the same time seeking peer support that inflates rather than deflates you.

Caregiving is not a competition and there will always be differences in doctors, hospitals, clinics, community resources and more.   We all learn and grow with the peer support you provide when sharing your lives with us and each other. Please don’t burden yourselves further by carrying the torch at the Guilt Olympics; we care and you matter.

Best always,

Linda

CBS News Caregiver Broadcast

Greetings,
       Here is the promised CBS News video of our treasured friend and her daughter:


       Please spread the word so that Caregivers' needs and challenges are better understood!


Linda

Awareness is Key!

Greetings, friends,
        We send you a rallying call today:  keep sharing the vital role of Caregivers in the Continuum of Care!
        We never use those words glibly:  Continuum of Care.  Caregivers know it is by their actions and commitment that compassionate care supports our brave injured, ill, or wounded troops.  We know that you are the essential backbone of that care, and that your crucial role is often overlooked.

        Recently, more serious media attention has been given to warriors, veterans, and their Caregivers.  After the September 27th NY Times article on Veteran Caregiving, the CBS News  evening broadcast included a piece on Warrior Caregiving on October 7th (above photo, video to follow).  On Saturday, Pamela Eggleston of Blue Star Families and I participated in a panel discussion regarding women veterans and service family needs, including the value of Caregivers in recovery (below).  Very tough topics such as MST (military sexual trauma or rape/assault), equity in benefits for Guard/Reserve, and the evolving VA medical system to address women's issues were discussed, and Caregiving needs resonated with the attendees.

        We are spending significant time talking with DoD and VA leadership about proactive assistance and timely follow-through.  There is unfortunate bureaucracy in managing chronic pain, depression, invisible injuries (PTS and TBI), family health issues, and comprehensive care plans.  Suicide prevention will always be a deep concern.  As you are aware, under the "feel good" stories are unresolved darker stories that may follow if we do not keep assertively sharing service family challenges and casting light into the dimmer corners.  

        In short, we appreciate you and your commitment.  Maya Angelou said this:  “There is no greater agony than bearing an untold story inside you.”  Tell your stories and shine the Light !

Linda

PS:  Even our foreign counterparts are requesting briefings about the role of Caregiving in reintegration after injury.  Let your voices be heard!