Posted in Autism, Behavior/ ABA, Dual Diagnosis Down syndrome and autism, Parenting Special Needs

Blog #180~Special Needs Moms,Let Go of the Guilt

Blog #180~Special Needs Moms, Let Go of the Guilt

No Guilt

Am I doing enough for my child?  Should I switch to a gluten-free diet?  Does my child need more ABA (Applied Behavioral Analysis) therapy?  Maybe I should be diffusing essential oils?  These and many other questions swirl constantly, in the mind of a parent having a special needs child.  I should know after 23 years of raising my son, Nick.  He has a dual diagnosis of Down syndrome and autism.  Over the years, I’ve allowed doubt to creep in.  You see other moms talking about intense ABA therapy, up to 20 hours a week.  You hear testimonials of how a gluten-free diet helped to increase speech and decrease problematic behaviors.  Then, there are the success stories and pictures plastered over social media groups.  Compelling accounts of children excelling in Special Olympics, summer camps, recreational programs and the latest programs sure to launch your child new heights.  There is a tremendous amount of pressure to do it all.  So, you begin to question yourself as a parent.  Am I doing everything I can to help my child with special needs?  This is when the guilt begins to seep in.  That’s, when you need to let go of the guilt.

Parenting is a balance act.  The responsibilities of running a household, taking care of children and their activities along with your own personal job and welfare, can be enormous.  At several points over the last 23 years, I’ve hit walls where the pressure is just too much.

At those junctures, it’s important to stop, take a breath, and re-evaluate what works for your child with special needs, and the entire family……

*RE-EVALUATE- Which treatments, therapies, and recreational programs are useful? Where are you seeing growth and enjoyment for your child?  Weigh the benefits against the disadvantages of each program, treatment, and therapies that you are considering.

*PRIORITIZE- What activities are essential for my child and any siblings?  Which of these activities are needs/must haves (like swimming lessons), and which are wants (like a recreational soccer program)?

*STRIP BACK- After you’ve re-evaluated and prioritized, create a new schedule that suits your family.  Listen to the cues of your child, (and yourself).  Is it stressful, time-consuming, expensive or sapping your energy?  Has it become a huge inconvenience and unfair to the rest of your family?

Right now is a perfect time, before school starts, to take a deep look at all the therapies and activities your child and siblings are involved in.  Are these programs enhancing their growth?  How much time are you spending in the car, commuting all over town for these therapies and other programs? Sometimes, it’s just TOO MUCH for you child and other family members.  Consider scaling back, and opt to incorporate learning activities at home. Ask your child’s therapists for suggestions on how to do this.  With their help, create learning (TEACCH) activities that can be done at home.  It really helped me to achieve better balance, when I scaled back, and incorporated a few of the TEACCH activities along with natural occurring jobs around the house, instead of driving all over town each day to therapies.  🙂

TEACCH (Treatment and Education of Autistic and Communication is an evidence-based service, training, and research program for individuals of all ages and skill levels with autism spectrum disorders.  

Here are some TEACCH bins we do in our home with Nick…..

Task Strip with a highly preferred reward to work towards. Nick picks out a reward  from his PECs (Picture Exchange Communication book) or AAC (Augmentative and Alternative Communication Device).  He usually chooses a Sprite….

Task Two Strip

Nick get’s handed the #1 and matches to the bin and completes the activity.  Once this is done he puts the #1 on the green task strip.  This is repeated for all four bins. The activities range from sorting, matching, assembly, folding, and fine motor.  Bins can be customized to fit the needs of an individual child.  These are just a few of many Nick does.  Be sure to mix in some that have a high success rate, with more challenging activities suitable for your child:

bins 1 and 2   Bins 3 and 4

Naturally occurring activities can also be added around the house throughout the day.  Examples include unloading the dishwasher, garbage/recycling, laundry, putting groceries away, cleaning counters, vacuuming, and gardening.

Nick watering plants

All these activities help to build new skill sets, confidence and independence.  The TEACCH activities are also implemented by respite caregivers, which we’ve hired with the help of state waiver funding.  These caregivers work on goals both in the home and out in the community. Respite workers can also help take your child to afterschool activities such as therapy, Special Olympics/ sports or swim lessons and social groups. Having respite care or hiring a babysitter, allows a parent to get a break and take time to get out and enjoy their own life.

It’s so easy to get bombarded with advice on treatments, diets, therapies and recreational programs related to special needs.  As a parent, you need to decide what is useful and stop feeling guilty about doing everything single therapy and program to help your child.  Do your research, weigh the pro’s and cons, and decide what works best for your child and family. Consider incorporating TEACCH activities at home, instead of running and around, and spending more time in multiple therapy clinics.  Don’t allow those guilty thoughts to rob your peace, or make you doubt your parenting skills.

relax boardwalk

That’s what is in my noggin this week.

~Teresa

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Posted in Autism, Down syndrome

Blog #99~ *Essential Oils and Sleep

Blog #99~ *Essential Oils and Sleep

*The statements on this blog regarding essential oils are my personal testimony only. Any claims made for the products listed below are based on the experience of my son, Nick who has Down syndrome and autism. The products have not been evaluated by the FDA.

Recently, there was a discussion about essential oils on one of the Down syndrome & autism Facebook groups that I belong to. A couple of mums from England described the benefits of using Bach Flower remedies to promote better sleep. I decided to do some research on essential oils to see if they might benefit Nick.

Here’s what I pulled off the website: http:// www.bachflower.org

bach flower logo

“Bach Flower Remedies were invented and developed by Dr. Edward Bach about 80 years ago. Dr. Bach isolated and classified 38 flowers from which he extracted 38 essences with which he succeeded in healing patients’ ailments while taking    into account their individual emotional states. Dr. Bach found that certain flower essences led to self-healing, as they purified the patient of negative elements that adversely affected their health.”

There is a difference in Bach Flower Therapy and other essential oils.  I found the following link which contains more information that further distinguishes them: http://goodworkswellness.com/difference-between-bach-flower-remedies-essential-oils-and-herbal-tinctures/.

Essential oils work on the body, mind and soul.  I learned that these oils were more than just a fragrance.  They can provide immense health benefits for humans and animals. They are natural, non-toxic and non-habit forming. The oils can be administered topically, aromatically, and most can be taken internally.

bach flowers

When using them topically add 1-2 drops to carrier oil (such as coconut or olive oil) and massage over a large area.  Avoid rubbing essential oils on the skin directly, always mix them with a carrier oil.  You can rub the mixture on the bottoms of the feet or back of the neck at the brain stem and gently massaged into the skin. The second way to administer the oils is aromatically using a diffuser. The third way is internally.  It is best to assume that an essential oil should not be used internally, unless the product has been specifically labeled as safe for internal use.

After doing this research I decided to give it a try.  I’d welcome anything that would help Nick sleep through the night.

autism and sleep cartoon

I went to Fruitful Yield, a natural food and vitamin store (in Oswego, Illinois), where a very helpful staff guided me to a few types of the essential oils.  Here’s a sample chart of some of the oils:

bach flower chart 2

I decided to pick one Bach Flower remedy called “Vervain,” which helps you to relax when you are over enthusiastic or strongly driven.  The second oil was suggested by the staff person at Fruitful Yield……

“Now Essential Oil Peaceful Sleep”………

Peaceful Sleep Oil

The Now Diffuser was very easy to use and priced at $30 dollars.  It BPA-free and utilizes high-frequency ultrasonic electrical vibrations to create an ultra-fine aromatherapy mist.  Also, it doesn’t utilize heat, which maintains essential oil integrity and holistic properties.  You simply fill it the line with tepid water, put a few oil drops in and push the button.  A plume of mist filled with the scents of orange, tangerine, lavender, chamomile, ylang ylang oils along with sandalwood in the Peaceful Sleep Essential Oil then fills the air. It is a floral citrus aroma with benefits to calm, relax and soothe.   The Now Diffuser also has a light that changes colors intermittently.

 Nick’s out like a light  🙂 ……….

aromatherapy

After using the diffuser with the peaceful sleep oil for two weeks, I am happy to report that Nick is sleeping much better.  There is a notable difference.  Nick is relaxing and falling to sleep much quicker than he usually does. He is also sleeping without interruption almost every single night.

I haven’t tried the Bach Flower Remedy yet since the Peaceful Sleep Oil is working like a charm for Nick. This experiment with using essential oils to help with sleep has been very successful for Nick.   As I have mentioned in other blogs that I’ve written, it’s good to think out of the box. That’s what is in my noggin this week. 🙂

~Teresa

thinking outside the box