Slow Motion Mothering

I am a fast moving kind of a gal.

I like to go, go, go and get things done, done, done.

I like making lists and checking things off.

I guess it would be safe to say that I am most happy when I am moving.

But this fast moving, freewheeling, on-the-go lifestyle is not very conductive to raising children diagnosed with things like sensory processing disorder and poor motor planning issues.

In fact, I have discovered, somewhat reluctantly, that raising my children is all about learning how to slow things down, way down. It is a painful life lesson often delivered to me with blunt force trauma to the brain.

But applying the brakes has never come easy for me.  For a long time, I resisted this notion of slow motion mothering. I continued to run faster than a speeding bullet, slowing my pace only slightly as I dragged my overwhelmed children from one chaotic event to another.

I was surprised, even angry, when my children began to scream and cry.

I thought at first, that the trouble was them.

What I have learned most recently..... is that the trouble is me.

As many of you know, Nicholas has been diagnosed with Prader Willi Syndrome. Many individuals diagnosed with this disorder are also diagnosed with dyspraxia.

Dyspraxia is a developmental coordination disorder that causes weakness in comprehension, information processing and listening.

 

It is a disruption in the way messages from the brain are transmitted to the body.

 

Often children diagnosed with dyspraxia also have issues related to the processing of sensory information. 

 

 

Too much sight, sound, smell, touch or taste information delivered too fast to the body overwhelms the brain resulting in emotional overload.

What I have learned is......this behavior is not telling me ...."I want to be defiant"

It is telling me.........."I'm overwhelmed"

Slowing things down and minimizing the amount of sensory input is crucial to enabling my son to be successful in this world. It enables him to enjoy loud events, boisterous activities and large crowds.

As a mother of a child diagnosed with this condition it is my responsibility to slowly build Nick's sensory endurance. Introducing events and new experiences slowly, building each time in intensity so that he can finally begin to function and relate better to our fast-moving world. This is a necessity if he is ever going to be able to live on his own, go to school or secure a job.

And so it is with much difficulty that I am learning how to slow down the eager speed demon.

Now if I can just get the rest of the world to understand this important lesson.

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Lisa Peters writes more about family life at www.onalifelessperfect.blogspot.com.

Presense

Vowed to start (rather, re-start) yoga when school started back up in the fall. It started back up, and so did I. This is my last back-to-school fall, the last time I'm going to let my son trick-or-treat, the last season of football games, the last of so many routines, rituals and rhythms that have come to mark the passage of time.

Yoga is helping me to be present. For one hour, I am "there." I am not in my head. Not planning the future to a T. Not dwelling on the past. Not making a list. Not replaying the incredibly ignorant/annoying/maddening thing someone did or said. I'm present.

It helps that I'm not very good - I need to really pay attention to the teacher. I need to hear the instructions, and see what she's doing, for it to make sense to me. By the time she's said, "Let's do the other side now," I've long forgotten what the first side did.

Savasana is as close as I've ever gotten to an out-of-body experience. At the end of the practice, lying on the mat, laid over a dirty carpet, people all around me, I am in another place. They also call it the Corpse Pose, or final relaxation.

As the mother of a special-needs adult, what happens to him when I'm actually a corpse, is ever on my mind. To make my whole life one big yoga practice, is the goal. To be present. To listen. To watch. To keep breathing. To stretch. To add-on when I can, and adjust when the "pose" is too demanding - that's the key.

And to be at perfect peace for the "final relaxation."





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Carrie is a parent and advocate of a child with special needs and even more special gifts. She blogs at http://carrielink.blogspot.com/ where this is pretty much her favorite topic. Carrie’s book, WIL OF GOD: Embracing the Relentless Love of a Special Child, is available in print on Amazon and all e-readers.

Happy Birthday!!!

She came into my life like a rolling thunder storm.  A little nine month old.  She came with one broken cardboard box full of clothes and shoes that were too small and broken toys.

A week later we were in the hospital with a child who nearly died two days after coming home to us.

Two long scary weeks later she came home to us.  She had lost three pounds and I was terrified that she would not make the year.  But she did.  You see no one told her she had an expiration date stamped on her.

We celebrated not one but two birthdays!!  Two precious years with a medically fragile child is an amazing feat.  She has shown me courage, strength, and grace.  She has taught me that life is a beautiful fragile web.  I don't dwell so much in the future but live for today, She is my hero and next week we get ready to celebrate another milestone.  Three.  My daughter has made it to three.  For me that is such a blessing.

What the year brings I don't know and frankly I don't want to.  I choose to live for today and celebrate my daughter.

Happy birthday little girl!  Mama loves you and is proud of her warrior daughter.  You bring me more joy than you know.
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Amy Fields is a mama and a blogger.  Follow her at Many Kinds of Families.

Will my child be able to decide for him/herself?

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Many parents have fears for the future of their child with special needs.  Families wonder if their child will be able to take care of themselves, including making medical and other life decisions. 

Is Guardianship the Best Choice?

Families may not realize that once their child is 18 (or the age of an adult under their state law), they get to make educational and medical decisions on their, regardless of their disability.  Because families may have questions about their young adult’s capacity to make their own decisions, or because a professional may encourage them to do so, they may consider going through a legal process to have a court declare the adult with a disability not competent to make decisions and give “legal guardianship” to their parent(s).  Many individuals with disabilities, and a growing number of parents, now see this as a civil rights issue, as it essentially takes away the ability of the person with a disability to decide about their own life.  While in many states there is the ability to apply for “limited guardianship,” there are also other options that avoid the need for guardianship and maintain the civil rights of the adult with special needs.

 

                                                                               www.ncil.org

 

 

Alternatives to Guardianship

There are many tools other than guardianship that parents can use to participate in decision-making on behalf of their young adult with special needs while still maintaining the civil rights of the adult.  For example, parents can use a “power of attorney” or even a form signed by their young adult authorizing them to participate in and/or make decisions for their young adult (see Resources and Forms below.)  There is an excellent guide for self-advocates, “Self Advocacy Guide to Guardianship” (see chapter 2) from Disability Rights Idaho, available at http://www.disabilityrightsidaho.org/images/content/docs/Self-Advocacy%20Guide%20to%20Guardianships.pdf. 

www.aboutkidshealth.ca

 

Children and adults with disabilities need to have input using independent or shared decision-making to the best of their ability.  Families and self-advocates need to be aware of their choices, so that they can pick the options that best suit their needs.  For more information, please see our factsheet at http://www.spanadvocacy.org/content/alternatives-guardianship-health-decisions-families-young-adults-special-needs.

 

 

 

                                                        autisticadvocacy.tumblr.com        

 

 

Resources:

Alternatives to guardianship resources can be found at:

 

Ø  Alternatives to Guardianship

http://ruralinstitute.umt.edu/images/archived_publications/Alternatives_To_Guardianship.pdf

 

Ø  Guardianship & Alternatives to Guardianship http://www.ridlc.org/publications/RIDLC_Guardianship_Booklet.pdf

 

Ø  Guardianship and its Alternatives – (see Chapter 3)

http://mcdd.kennedykrieger.org/guardianship-and-its-alternatives-handbook-2011.pdf

 

Ø  Thinking About Guardianship? http://www.gcdd.org/images/Reports/guardianship%20guide%20-%20gcdd.pdf

Forms:

Sample healthcare power of attorney/advance directive forms

American Academy of Family Practitioners (AAFP)

http://www.aafp.org/afp/1999/0201/p617.html

 

Please note: This information was current at the time of publication. But medical information is always changing, and some information given here may be out of date. For regularly updated information on a variety of health topics, please visit familydoctor.org, the AAFP patient education Web site.

 

Helpful Contacts:

Parent Training and Information Centers

PTIs help families with many issues, including transition to adult life.  Transition is more than school-to-work and also includes adult healthcare, post-secondary education, and self-advocacy.  PTIs can be found at http://www.parentcenterhub.org/find-your-center/

 

 

Centers for Independent Living - CILs maximize skills needed for independent living, supports needed to achieve this goal, and maximize potential of individuals who may not live independently.  CILs are found at http://www.ilru.org/projects/cil-net/cil-center-and-association-directory.

 

Remain Hopeful, 

Lauren   

Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269.  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.