Category Archives: Support for Parents of Children with Special Needs

Parents with Disabilities

Today, my guest writer, Ashley Taylor, is writing to support those with disabilities who want to have children, read on!  

What Anyone With A Disability Needs  To Know About Becoming A Parent

Babies don’t come with an instruction manual, so it’s understandable why new parents have the jitters for the first few weeks. Among the scenarios that cause nervousness, fear of tripping or dropping the baby tops the list — this is likely top of mind for parents with disabilities, too. But considering there are approximately 4.1 million disabled adults managing parenthood, you’re not exactly exploring uncharted territory. With a little preparation and self-care, you’ll be able to begin the next chapter of your life with confidence and safety.

Make Any Necessary Home Modifications

It’s likely that you already have some home modifications in place, but just in case, projects that can help a parent with a disability include:

  • Expandable hinges to widen doorways for easier wheelchair accessibility
  • Replacing steps with a ramp
  • Placing safety gates at the top and bottom of stairs
  • Installing skid-resistant flooring to prevent slips
  • Creating a clutter-free playroom with anchored furniture
  • Making kitchen countertops and the stove at an accessible height
  • Installing a loop lever faucet in the bathroom to make it easier to use from a distance
  • Keeping cleaning and changing essentials on a rolling cart so they’re easy to access at all times
  • If lower, specialty cribs are too expensive, do a DIY version by cutting the legs off a regular crib and then placing it on risers

Make Time To Relax

Numerous studies indicate that stress and (in some cases) depression can kick in after the baby is born. Finding time to relax — even just five to ten minutes a day — can make the difference between a slightly stressful day and an unbearable one. Even just five to ten minutes a day can help. The same techniques that are used to help relax individuals with a disability can be applied to parenthood. From visualization and meditation to yoga and self-hypnosis, here are several options available to you.

Before baby arrives, make sure there’s an area in your home that you can designate specifically for downtime. Outfit the space with oxygen-rich plants, drapes and wall coverings in soothing tones, a dimmer switch for lighting and a comfortable piece of furniture to rest on.

Don’t Neglect Self-Care

While you’ll be busier than ever after your little one arrives, don’t use that as an excuse to neglect self-care. Work with your spouse/partner on a schedule so you can take time to go to exercise, return phone calls, or meet a friend.

Another important factor that sometimes falls to the wayside with parenting is personal hygiene, to include brushing and flossing, bathing, doing your hair, and getting dressed — even if you don’t leave the house. From a psychological standpoint, you’ll feel better about yourself while feeling prepared to take on the day with confidence.

 

Eat For Energy — And Stress-Relief

What you put in your body affects what you’ll be able to handle physically and mentally, which is crucial for anyone let alone a busy parent. When considering what to eat, don’t neglect nutritious foods including nuts, red peppers, oatmeal, spinach and salmon as they also have stress-relieving benefits.

 While you may want to handle everything on your own, don’t be afraid to ask for help — and don’t feel guilty for doing so. Along with tapping your loved ones, make sure you’re aware of the resources available to you as a disabled parent, to include everything from financial support to support groups where you can share your feelings and frustrations.

You’re embarking on an exciting journey so take care of yourself so you can effectively take care of your baby.

Ashley Taylor is a freelance writer, photographer, and advocate for people with disabilities. She created DisabledParents.org to provide information and resources to other parents with disabilities. When she isn’t working, she enjoys spending time with her husband and two children.

Therapy’s Transformational Moments

In times of difficult emotions, it’s important to know that psychotherapy can offer transformational change and emotional growth.

I wanted to share this moving article from this week.

By Barry Duncan – Reprinted from Psychotherapy Networker online

A recent consult I did illustrates the intrinsic rewards of healing involvement and intimate connection. It also taught me that anything is possible—that even the bleakest sessions can have a positive outcome if you stay with the process.
— Read on www.psychotherapynetworker.org/blog/details/698/therapys-transformational-moments

MIXED MESSAGES

21453265 - young boy tries to do his homework  the problem with learning

After the heartbreak of letting the kids go off to school, your parent worry brain will start focusing on new possibilities:

  • Will my child like their teacher/s?
  • Will the teachers like my kid?
  • How is my kid progressing?
  • Does s/he like the way the material is being taught?
  • Is the teacher going to be sensitive to (fill in the blank):
    • Timmy’s allergies,
    • Joanie’s shyness,
    • Max’s fine motor struggle,
    • Sophie’s pushiness is a mask for her anxiety,
    • Allegra’s wandering but creative mind
    • Heidi’s previous bullying experience
    • And always: is there too much homework or is it just my kid?????

YOUR CONCERNS ARE REAL: VOICE THEM!

Most parents  have specific concerns about their child.  Many parents complain to me that when they voice concerns, they either get no response or vague responses from school administrations.

My advice:  Schedule a meeting time (not the standard back to school meetings) to discuss your concerns and ask what can be done?  Don’t wait for them to call you.

What happens if you wait? Well, sometimes, teachers do not notify parents in a timely way that they are concerned.  Other teachers will voice concerns too early and later, when the child adjusts, the concerns seem to fade.  One of the most common issues I hear is that parents learn (too late) by May that their child needs to (fill in the blank): repeat a grade, get tested, have intensive tutoring, is having social problems or they have no idea how to help and s/he can’t come back next year……

HERE IS WHY YOU CAN GET MIXED MESSAGES:   

  1. Schools: Most schools (don’t flame me for this statement) are designed to be efficient conveyor belts of education.  In comes a group in September, out they go in June.  In-N-Out.  The curriculum is devised to meet the mainstream kids.  While many schools have resource rooms, learning centers, and social groups, they are usually crowded and not individualized.  There are some wonderfully individualized and nurturing schools with small classes and a low ratio of teacher:student but these are rare gems.
  2. Teachers: Most teachers I know are lovely dedicated people who could easily be doing jobs that are higher paying or easier.  They are in the trenches with your kids daily.  It’s such a hard job! And unfortunately, your ‘one and only’ is not the teacher’s ‘one and only’.  Teachers teach to GROUPS, not individuals.  They are also not specifically trained to identify problems, nor are they allowed to suggest diagnoses (as much as they may be tempted to).  Also (and here is the biggest one): teachers do not want to scare parents.  To suggest that something is problematic about your child creates a situation where they may have to stand by what they said, even when it is just a hunch.
  3. Principals. Most principals are busy juggling efficiency, friendliness and maintaining a high school standard.  They also have a lot of budget responsibilities.  Acknowledging that a child has an issue leads to IEP, testing and costly interventions.  I understand their reluctance.

COMMON MIXED MESSAGES:

SAMPLE #1:

February:  (teacher): we are concerned about your child’s level of attention and participation in the class

May:  (teacher):everything is fine

Next September:  (teacher):didn’t we ask you to have your child tested for attention last year?

SAMPLE #2:

November:  (teacher) Jonny is not catching on to his academics easily.  Let’s wait and see.

February:  (teacher) Jonny should maybe get a tutor

May:  (Principal): we think jonny needs a different school (too late to apply to other schools!)

SAMPLE 3#

September: (parent):  I am worried about my child’s anxiety about academics

October:  (teacher): everything seems fine

November:  (parent):  I am still worried and now my child hates school

December:  (teacher):  let’s wait until after winter break to see where we are at

January:  (pediatrician) he looks fine to me, what does his teacher say? (teacher): he is doing fine now

February:  (parent:)  his grades are terrible and he has stomach aches every morning.  How can he be doing fine?

May:  (principal and teacher):  we think you should have Jonny tested

Parent:  I called every neuropsychologist in town and they all have waiting lists of 3 months! Why didn’t you tell me this in the fall?

BOTTOM LINE:

TRUST YOUR GUT INSTINCT ABOUT YOUR CHILD.  HAVE YOUR CHILD TESTED WHEN YOU ARE WORRIED.  MIXED MESSAGES OR TOO LATE MESSAGES ARE COMMON FROM EVEN THE BEST SCHOOLS.    GET YOUR CHILD CHECKED OUT AND GET THE HELP THEY NEED.

21453265 - young boy tries to do his homework  the problem with learning

You Can Be the Change

When your kids are being difficult or just plain cranky, it’s normal to have a bad day in parenting land.

But when that child develops a serious illness, has a disability such as ADHD, Dyslexia, Autism Spectrum Disorder or other Neurodevelopmental disorders, your parenting perspective and emotional responses change instantly.

The Traumatized Parent

Parents can leap from just being a stressed-out parent into PTSD (Post Traumatic Stress Disorder) or Acute Traumatic Stress Disorder, quite easily.  Because NOTHING is as scary or stressful as your child with an illness or a disorder.  NOTHING.  and this affects parents in their deepest emotional response, which in turn affects their quality of parenting.

Here is an example to highlight what can happen: (fictional composite)

Marcia is a very caring parent. She has been an avid reader of parenting books to help her be a better mother since her daughter’s infancy. She surfs the internet almost daily on the subject of raising a good child, an optimistic child, an obedient child.  Marcia is looking for the magic to help make her family life easier.

Her child, diagnosed with ADHD, Chronic Pulmonary Insufficiency and sensory motor delays, is a handful.

As Marcia talks about her child in my office, her voice rises louder and her speech becomes more rapid.  During the hour, it’s not her child’s issues that fill the room. It’s Marcia.  Marcia is frantic.

In trying to gain perspective on her parenting style, she admits that she loses her temper easily, rarely gets a night of sleep anymore, and wonders with doubt and anxiety, if the expectations that she has for her child are reasonable.  That her child nearly died running into busy traffic only adds fuel to Marcia’s anxiety.

She is, in short,  a ‘mommy mess’, an emotional wreck.

Marcia could be any one of us.

When you parent a child  who is atypical, the demands are steep, the day is short and the support is never enough. Parents can literally feel as if they are in the desert with no water. The parent manual that was supposed to show up on the doorstep as the stork dropped off the baby was missing. Parents have literally nothing but their instincts to guide them through the labyrinth of child rearing. And children who are ‘different’ require so much more than you think.

It takes a village to raise a child, but it takes an army to raise an atypical child. But sometimes the army is YOU.

When your child is different, there is no one size fits all when it comes to parenting. Especially when your child is not the cookie cutter variety. Atypical children do not respond to the tried and true parenting techniques. It is more of an art form, learning how to parent your child. Each parent stumbles along, finding out by trial and error what works best for their own child.

It’s a game changer.

This child rearing challenge becomes so much deeper when your child is different than you imagined.  Because now, it’s also about you.  The decisions you make, the emotional tsunami that happens as you navigate your family’s daily survival and the relationships you make around you will decide the level of the health and well being of you, your child, your partner, and other family members.

If momma ain’t happy, ain’t no one happy.

It’s trite but true.  Research has found that depressed mothers are less likely to be able to bond effectively, and to follow through on taking care of their childs’ needs.  That’s right, moms need to be happy in order to run their world.  Of course, nowadays, this also means dads.  So many dads are primary caretakers and have similar needs.  Whether it’s a traditional family, single parent family, gay or blended  family, there is typically one caretaker who shoulders the majority of the child care issues.  And that person is most often needing extra attention. Could that person be YOU? Please get help! Your happiness becomes the most important game changer for your family.  

TIPS TO “BE THE CHANGE”:

1.Positive Mindset: 

The field of Positive Psychology has proved that you can change your outlook. One way to do this is by changing your self talk. Ask yourself, “Is there another way to see this situation?”

2.Nourish Those Needs of Yours!

Ask yourself: what have you given up in order to raise your child? For some women, it was a fulfilling career, for others it was freedom to be creative or to travel.  Yet for others, the image of an exercise plan is fading as child/house demands increase.  It’s time to get it back; people can’t live with emotional deprivation for very long. Pick one thing on your list and try it out.  If you have no clue what would work for you, try anything. A neighborhood mah jonng game, even if you’ve never played before. You never know what may

3.Empty time:

you need time just to do nothing. For some, this means napping. For others, this means reading a magazine and yet for others, this means staring into space while sitting in a hot tub. Sound good? Go for it.  If babysitters are in short supply or finances are a burden, You can apply for free respite care is available through social services in your community.

4.LOVE:

how is your love life these days? Yeah, I thought so. Get to work. Make it blossom. Marriage seminar retreats or books or date night.  You know the drill, just try it!

5.Community:

give back. If you think you don’t have time, think again. The science of positive psychology has taught us that if you do something for someone else, you will feel happier. Getting involved in your child’s school, after school hobby, or something that you enjoy (visiting people in nursing homes, taking doggies for walk in dog shelter)

5.Receive:

don’t be afraid to reach out for help. Do you need dinners brought to you by caring friends for a rough stretch? Would you like more attention from your family? Make a list and see if you can make it happen for you. I have found that when you bring your mindful attention to a particular need, you open the possibility of having it happen for you.

In short, having a child with a diagnosis is s game changer.  With some effort and a lot of support, you can BE the change!

Sending all of you big hugs from me.