Monday, June 1, 2015

Apraxia: ideas to help speech

In January 2015 at age 3 1/2, Presley was given the diagnosis of "severe apraxia".  WedMd says this about it:  "Developmental apraxia of speech is also known as childhood apraxia of speech. This condition is present from birth, and it affects a child's ability to form sounds and words."  In other words, they may know what they want to say, but the words do not come out.  Up to 40% of children with Down syndrome are diagnosed with it.  The therapist said she wasn't sure though, because the few words Presley did say came out consistently the same way and same tone. The therapist said apraxia of speech typically says the same word a little different each time.  Presley could communicate her needs, but there had been very little actual speech from her.  After her evaluation, her speech therapist quit, and we began trying  a few different interventions.  By June 2015 (less than six months later and just a month before her 4th birthday), Presley went from silent gestures to babbling, reading all her word cards out loud, singing along with nursery rhymes, imitating all of us, and making small jokes with her sister. Here is a current video of Presley and her sister Payton working on word cards: https://www.youtube.com/watch?v=dmImQzFf9Jc What made Presley begin talking?  She did.  When the time was right, she began talking.  The articulation needs some work, but it is coming along great and I am thrilled to have words to work with.  Presley was recently evaluated and is reading on a 2nd grade level, so I knew cognitively she was well prepared, but getting her to form words was completely out of my control. So, we continued the course of laying a solid foundation for good speech. We still have a long way to go, but hearing her sweet voice is a true blessing.  I hope this list of our interventions helps someone else.

1.  Geminii - http://gemiini.org/ - we began this in January 2015 when our SLP bailed on us.  It seems to really give Presley the confidence to sound words out.  They use repetition and lots of close up videos of someone saying the words. Great program with great results. 


2.  Neurodevelopmental program - we use NACD (http://www.nacd.org/) but there are others like ICAN (http://www.senc.us/3.html) so find a reputable evaluator close to you.  NACD has guided me every step of the way.  They believe it is all about INPUT, INPUT, INPUT!  Keep expanding the receptive language and the expressive will follow.  Most of the ideas on this list are from them.


3.  Homemade speech videos using family.  Here are two of ours:
      * https://www.youtube.com/watch?v=FS5d4hPB-64
      * https://www.youtube.com/watch?v=DrtStLk02oE
      * here is a post about making videos:  http://www.3of21.com/2014/03/homemade-videos-to-teach-everything.html


4.  Oral Motor therapy techniques:  we use NACD and talk tools equipment such as bite blocks, horns, straws, etc..  Have an evaluation to ensure everything is strong enough with proper placement for speech.


5.  Sequential Processing:  we will always continue to pursue the next higher level of processing.  See Bob Doman's video about how processing affects language development: https://www.youtube.com/watch?v=QXE9QwjwFJE&app=desktop


6.  Brillkids:  wonderful reading program that is kind enough to offer large (or free) discounts to children with special needs.  It says the word, shows a photograph of the word, and then shows a video of the object or action. Very easy program to use.  We began this program at 6 months old. http://www.brillkids.com/ 


7.  Diet and supplements:  we began using biokids Shine (http://bioraykids.com/ ) just one week before Presley's explosion of words. We also use fermented CLO (Radiant Life) and include lots of healthy fats to feed the brain such as avocados, almond butter, coconut oil, etc..).  We are gluten free and dairy light with only yogurt and raw cheeses.  The gut is known as the second brain and has a direct influence on cognition and "brain fog".


8.  Reading books - this was very important to me as I wanted to create as love of reading for both of our girls.  We even made some videos of my 5 year old reading to Presley and play it over and over.


9.  Music - Presley loves music, so we used different sources:
      *  Talk it, Rock it CD's - (https://www.talkitrockit.com/shop/)  fun,    
          interactive with a good beat to sing to
      *  Readeez -  http://www.readeez.com/ videos with words and singing
      *  Mother goose club Presley's favorite to sing and dance to on youtube
          https://www.youtube.com/watch?v=iwgfEQk4p4U  


10.  Speech cards and word flip books - http://www.superduperinc.com/default.aspx


11.  Exercise:  there are so many studies that link exercise with increased cognition.  Here is one article:  http://www.disabilityscoop.com/2013/03/07/can-exercise-down-syndrome/17448/  NACD also encourages encouraging learning while the intensity is high (while they are having fun).  We would go for nature walks and draw alphabet letters in the dirt as we walked and name everything we saw. 


12.  Speech apps:  NACD has a good collection for the ipad: http://nacd.org/speech_sound/apps.php  We also used articulation station, Tiga talk, and Speech 4 Kids.


13.  Ears:  Stay on top of hearing, watch out for fluid and ear infections with any congestion.  Have hearing tested regularly.  They can not repeat sounds they can not hear.


14.  The Listening Program: addresses auditory tonal processing http://nacd.org/speech_sound/the_listening_program.php


15.  Stay informed: Read this great article on Andi Durkin's blog for more information: http://dsdaytoday.blogspot.com/2014/03/treating-apraxia-in-children-with-down.html


16.  Time:  you can do everything on this list, but ultimately they will decide when the time is right.  This is difficult when you know all the pieces are in their proper place, but nothing comes out.  Stay strong and consistent, the end justifies the means.


Many blessings in your journey,
Robin

Thursday, March 26, 2015

Natural ways to treat congestion

It has been over a year since Presley has had any congestion, so I had to get back into my books and notes to remember all the natural ways we can assist the body to recover when she developed some congestion this week. I thought I would consolidate it here for myself and others who may be interested. Please know there are times to take your child straight to a doctor for an evaluation and treatment, such as high fever, persistent fever, worsening or persistence of symptoms, refusal to eat or drink, ear pain, shortness of breath and more. However, when it is mild congestion, I like to try using a natural approach. The following list could be discussed with your doctor at your next visit, so you are ready the next time your child gets the sniffles.

1. Homemade Vapor rub - I tend to stay away from chemicals, and I like being able to pronounce all of the ingredients being placed on my children's skin, since it is the largest organ in our body. Over the counter Vick's Vapor rub is lavender, rosemary, and euchalyptus PLUS petroleum, we don't need that last ingredient. I like this recipe from Wellness Mama:
http://wellnessmama.com/3527/natural-vapor-rub/>

Ingredients
•½ cup olive oil, coconut oil, or almond oil
•2 level tablespoons of beeswax pastilles
•20 drops of Eucalyptus Oil
•20 drops Peppermint Oil
•10 drops Rosemary Oil
•10 drops cinnamon or clove oil (optional)

1.Melt beeswax with oil of choice in a double boiler until just melted.
2.Add the essential oils (use half the amount for a baby version or dilute with coconut oil before using)
3.Stir until well mixed and pour into some type of container with a lid to store. Little tins work well, as do small jars. I also always make a few in lip chap sticks to keep in my purse or use on baby feet.
4.Use as needed to help sooth coughing and congestion.

Notes: Make sure to dilute for babies and children and use as little as is needed. Can also make with the herbs instead of essential oils by infusing the oil with 1 tablespoon of each of the herbs in a double boiler over medium heat for 2 hours. Many essential oils, including these, are not considered safe for babies or small children. Always check with a doctor or healthcare provider about using herbs or essential oils on young children.


2. GOOT - this is a mixture of 3T coconut oil, 3T olive oil and 3T chopped garlic.  I obtained the recipe from Dr Jullian Neil. It is easy to make and can be used for different types of infections.  This is an "old school" type of healing recipe. I used it on my daughter's feet and covered them with socks while she was asleep. See recipe here: http://nacd.org/health/goot_garlic_oil_ointment.pdf


3. Diffusing essential oils - I like to change it up throughout the day, but  
    my go to oils are:
        - Breath Rite - works like magic on congestion - it may be found here:  
          http://heritageessentialoils.com/hulls-breathe-rite.php (I have no
          affiliation with Heritage oils and receive no compensation for their
          recommendation, I just really like their products)
        - Frankincense - I also mix this with fractionated coconut oil and  
          apply to bottoms of feet and down the spine and over the sinuses
        - Euchalyptus
        - Plague defense (similar to Thieves from Young Living) - can be    
          found here: http://heritageessentialoils.com/plague-defense.php
        - Respiratory Relief - http://heritageessentialoils.com/respiratory-relief.php


4. Myrtle - myrtle essential oil can be placed on a Qtip and inserted into each nostril. For us, this has always worked immediately and given relief for several hours. It does however sting your nasal mucosa somewhat, so you may want to try it on yourself first.   From Heritage essential oil website:  Myrtle can be diluted and swabbed in the nostrils for babies and used undiluted when a child is older. Follow with an appropriate salve such as Golden Salve* or Comfrey/Calendula Salve* to keep the nostrils moist.
NeilMed Sinus Rinse Pediatric Kit:
First make up the salt mix. Each time you use the NeilMed, you'll make up a fresh batch.
Sea Salt Mix
8 TB very fine Sea Salt
10 drops Rosemary ct. verbonone
6 drops Tea Tree or Manuka or Mytle
Mix well and store in a glass jar.
When needed, mix the following until the salt has dissolved and use in NeilMed to flush sinuses:
1 tsp of the Sea Salt Mix recipe
1 ½ cup warm (body temperature) distilled water


5. Detox bath - a nice warm bath always helps soothe achy muscles, so add a few ingredients to help detox whatever irritation is causing the congestion. My bath mixture contains 1 cup Epsom salt, 1/4 cup baking soda, 3-5 drops lavender, 3-5 euchalyptus and 1 drop of frankincense. The Epsom salt contains magnesium, so it is best to soak for 15-20 minutes. Here are 10 other great detox bath recipes from Dr Axe: http://draxe.com/detox-bath-recipes/


6. Humidifier - we use a humidifier year round. Too little moisture contributes to dry cracked skin and thick mucous, but too much moisture can encourage fungal and bacterial growth. We can measure our humidity levels via our thermostat and aim for 30-55%. During times of congestion, it is important to help keep the secretions thin. I also add a drop or two of Lugol's soluation to help clean the air.


7. Elderberry syrup - this is usually given once a day, but I increase it to once every 4 hours during an illness. I can also mix this with 1-2 drops of these essential oils: Lemmon, Lavender, and Peppermint to boost the immune system. It is commonly referred to as "LLP".  Tricia also places it inside a capsule or suppository (mixed with coconut oil) to treat allergies or congestion. See elderberry recipe here: (so easy to make!) http://www.3of21.com/2014/01/homemade-elderberry-syrup.html


8. Potato Peeling broth - it is very important to hydrate well with this broth or water during any illness. I have personally witnessed this broth restore health to individuals. My girls drink it each day mixed with a very small amount of organic apple juice. See Tricia's previous post for recipe: http://www.3of21.com/2014/07/potato-peel-broth.html


9. Rest - I support their body when they do not feel well by encouraging lots of rest. These are the days we do no therapy, go nowhere, and watch Minnie Mouse on tv to keep them from being too active.


10. Diet - stay away from dairy, which could encourage mucous production. We initially used goat milk, but more recently switched to coconut/almond milk. We always try to avoid processed foods. We eat real foods, it helps the body to take care of itself. You could also increase their Vitamin C intake via diet or supplementation. Vitamin D supports the immune system also. Avoiding sugar is important, since it weakens the immune system.


11. Chiropractor - do your own research, but I personally believe in our chiropractor and routinely take the girls to see him. At the first sign of illness, we make an extra appointment. Learn more at: http://www.chenalchiropractic.com/pediatrics/


12. Andi Durkin from the website "A Day to Day Guide to Down Syndrome"  has a great article about the importance of keeping congestion away, and why it is so important to keep our children breathing through their nose. Read more about her thoughts and suggestions at: http://dsdaytoday.blogspot.com/2011/07/keeping-nasal-passages-clear-mouths.html


13. Ear infection - keep an eye out for congestion to lead to an ear infection as children's ear canals are more parallel than the slanted anatomy that occurs as they get older. Children with DS typically have smaller canals anyway, so it takes even less mucous to create an infection. Some signs of congestion progressing to an ear infection is the low grade temperature increases and no longer responses to Ibuprofen; the crying increases or occurs for no obvious reason; pulling or pointing at their ears; drainage from the ears; one or both eyes turning inward as fluid accumulates. If you suspect an ear infection, please contact your physician for treatment.

14.  Recommendations from others: saline nasal rinses, raindrop technique using essential oils, and sinus washes using colloidal silver and xyitol, and craniosacral therapy.


Healthy blessings to you and yours, Robin

Tuesday, March 3, 2015

Let ARHIPP Pay Your Family Health Insurance Premium


 
 





First of all let me say ahead of time...I AM VERY SORRY.  I have completely dropped the ball on supplying this information to you, with that said lets get to the good stuff. 
 
What is ARHIPP?
 
The Arkansas Health Insurance Premium Payment (HIPP) program is sponsored by Arkansas Department of Human Services, Division of Medical Services. HIPP is designed to save money for Medicaid clients with high healthcare costs by reimbursing all or a portion of the cost of their health insurance provided by an employer or COBRA and by eliminating some of their out-of-pocket medical expenses. In some cases, clients may qualify to receive reimbursement for the premium cost of a family health insurance policy.
 
HIPP membership is completely free for those who qualify and does not affect eligibility for Medicaid.
 
Not currently insured through your job? When you qualify for HIPP, federal law makes it possible for you to enroll in employer-sponsored health insurance at any time of the year.
 
Do I Qualify?
 
The Arkansas HIPP program is specifically for qualifying Medicaid clients and their families who have access to group health insurance through a job or COBRA.
 
Other requirements:
  • Your health insurance must cover at least 1 Medicaid beneficiary
  • You must be able to provide the following Information along with your completed application:
-List of policy tiers and rates provided by your employer
-Policy number & group number
-Employer & employee share of premium cost
-Medicaid client(s) name & Medicaid identification number(s)
 

 
 
What are the benefits?
 
Arkansas Medicaid clients who enroll in HIPP will receive:
  • Reimbursement for the monthly cost of all or a portion of group health insurance provided by a job or COBRA.
  • Access to a wider network of doctors through group insurance coverage.
  • Healthcare for your entire family, even family members who are not eligible for Medicaid, if found to be cost-effective for the State of Arkansas.
 
Can I receive benefits from Arkansas HIPP and Medicaid at the same time?

Yes. To qualify for the HIPP program, an applicant must be eligible for Medicaid within the state of Arkansas. You will have access to benefits from both programs for as long as you qualify for each program (separately).
 
Will Arkansas HIPP pay for my entire family’s health insurance coverage?

 In some cases, an applicant will qualify to be reimbursed for family health insurance coverage. This depends on the health insurance policies your employer provides as well as the family plan’s cost-effectiveness.
 

Insurance Covered by HIPP

To be eligible for the Arkansas HIPP program you must have access to group health insurance that is offered by a job or COBRA.
 
What is COBRA?

Consolidated Omnibus Budget Reconciliation Act (COBRA) is a federal law that allows former employees to continue health insurance coverage for 18 – 36 months after leaving a job. If an applicant has access to COBRA, the applicant meets the insurance requirement for Arkansas HIPP. If all other qualifications for participation are met, HIPP will send you monthly reimbursements for all or a portion of the cost of the COBRA plan.
 
What is employer-sponsored insurance (ESI)?
Employer-sponsored insurance (ESI) is health insurance that employers offer to their employees, and is typically offered as part of an employee benefits package. ESI is offered to current employees.
Am I eligible for Arkansas HIPP if I have insurance that is not provided by an employer?
No. Arkansas HIPP is offered to clients who have access to employer-sponsored insurance or coverage through COBRA.
 

Applying for HIPP Benefits

There are three ways to apply for Arkansas HIPP benefits! You can:
Submit your completed application and documents by:
 
Toll-free Fax: 1-855-777-1001, or
Mail: HMS
Attn: AR HIPP
1818 N. Taylor St. #360
Little Rock, AR 72207
 
 
You must be able to provide the following Information:
  • Policyholder’s Social Security number
  • Policy number & group number of the group insurance
  • Employer & employee share of premium cost
  • Case identification number(s)
Along with your application, you must provide a copy of:
  • Insurance card (front and back)
  • Summary of benefits for your plan or desired plan
  • Employer health insurance rate sheet
  • Paystub if it shows premium deduction


We had on of or local moms put this together for additional assistance.  Thanks Amy Kinnard.


Lessons learned when applying for ARHIPP:

1. Apply online. https://pierweb.hmsy.com/Arkansas/hipponline/OnlineApplication.aspx

2. Better to email (customerservice@myarhipp.com) all your documents instead of faxing.
(Include pay stubs starting with the month you are applying, signed doctor's statement regarding your child's diagnosis, current plan benefit summary page with company logo, current plan rates, W-2, document showing your plans open enrollment dates, plan coverage dates)

*If you don't have access to a scanner, take pictures of each piece of information to send as jpgs instead of pdfs.

3. If your spouse is the policy holder, have him/her call and add your name to the account. He/she will need your date of birth and social. Failure to do this means that you won't even be able to call in and check on the status of the account. If your spouse doesn't have time to call, include a letter signed by him/her with the needed information to be sent along with the other documents. Only the person who is the primary insurance holder will be able to make changes or request information.

4. As soon as possible, find out what case # has been assigned to your account. Add this number to EVERY piece of information you email!!!

5. After emailing your documents, call a few days later to verify the information was received and linked to your account.

6. Create file folders both on your computer and inside your email account to store the pdf documents you sent and the actual emails sent so you have record and can quickly "re-send" if you are told the email in question was never received on their end.

7. Keep a telephone log. Write down the date, time and customer service reps name, and a brief description of what was discussed each time you call.

8. Understand that the person you are talking to when you call customer service is based in North Carolina and will have to send all your information over to your case worker in Arkansas.


Contact Us

AR HIPP
1818 N. Taylor St. #360
Little Rock, AR 72207
Toll-free Phone: 1-855-MyARHIPP (855-692-7447)
Toll-free Fax: 1-855-777-1001
 
 
 
 
 
 
 
 
 
 
 
 

Saturday, January 10, 2015

2014 NACD Scholarship Recipients

 
 
 
The Harris Family
 
Lachlan Harris
 
age 3
 

 
 
 
 
The Kinnard Family

Isaac Kinnard
 
age 4



 
 
 
 
The Stafford Family
 
 
Michael Quinn Stafford
 
age 2 
 
 
 
 


The Torres Family
 
 
Serio De JesusTorres
 
age 9 months



 
 
 
To everyone that came out and supported us for such an amazing cause we can not thank you enough.  Lives are forever being changed because of you.