Trip to IAHP – Summary of Lecture Series III

We have now been home for one and a half weeks from our trip to the Institutes for the Achievement of Human Potential (IAHP) in Philadelphia.  There is so much I can talk about but I will do my best to summarize.

Days 3-4: Lecture Series III

The parents spent about 11 hours each day (Tuesday and Wednesday) in the lecture hall learning more about our children and the resources there are to make significant progress. We were taught more about physical growth, intellectual growth, physiological growth, and social growth.

IAHP Auditorium

The gravity free and gravity assisted program are a new part of the physical growth program that we learned. With the use of a harness and surgical tubing, the kids will be able to partially experience a gravity free and assisted environment. When you have physical limitations, gravity is very difficult to work with. IAHP began working with NASA’s Ames Research Center in 1976 to develop this program. They have continued their relationship with NASA and have accomplished many projects together including the oxygen enrichment program. Dr. Ralph Pelligra, chief medical officer of the research center is still on the board of the IAHP. Cate will not start the anti and assisted gravity program yet but I expect she will start next time.

We had a review of the effect of food, chemicals and the environment on health, behavior and the brain and learned about applied kinesiology and how IAHP utilizes this tool to help the kids. There is a chiropractor and applied kinesiologist on staff at IAHP. We were taught how to do acupressure tapping for Cate during this session to relax her upper body tension. I will keep you posted on how it works!

Our first lecture on social growth was about The Law. It seems like common sense right… rules, consequences, and follow through. But when you have a very intelligent brain injured child it is easy to lose control of your house. Our house now has 3 laws posted on the wall: 1) No screaming 2) No throwing 3) No hitting and kicking.  The second two laws are more for Charlie.

The majority of the lecture time was about intellectual growth: joyousness and reading, auditory pathway, communication and language development. We learned about the impressive tool of facilitated communication, invented by Rosemary Crossley in Australia. We already use a choice board for Cate but this will take it to another level. Basically, without having verbal language or written language my child can learn to communicate very clearly and effectively using a word board and eventually a keyboard. We haven’t tried it yet and I think we will wait until she can read 1500-2000 words. Currently she knows 1000 words. Give us a few more months and we will be ready. This does not replace encouraging Cate to speak, but it will help to give her a voice until she speaks clearly. We also learned that all sounds are language, even if poor quality! Now we just have to learn how to interrupt the sounds. This is important to remember as Cate starts to make new sounds, she is currently practicing the letter “m”. I assume so she can say mom!

We got Cate’s new program and have slowly began. More to come!

My best IAHP friend! Jen is another intensive treatment mom. Her son Jacob and Cate are the same age. Visit her blog, http://www.defyingthediagnosis.com

Trip to IAHP- Day 2 Evaluation

Yesterday we arrived at the Institutes at 9am with Cate and spent the day playing with her friends, reading books, crawling on the floor, playing with new toys… oh yeah and Cate got a full neurological evaluation done.  They were very happy with Cate’s progress.  I sent in reports and videos but they were able to see and test her abilities. There was so much that happened but one thing that I was surprised and impressed with was her tactile competence. Her evaluator showed her a small jingle bell and a small toy elephant and told her what they were.  She mixed them up and put one in each of her hands without her seeing the objects. She asked her to let go of the bell and after about 10 seconds of thinking about it she opened the hand with the bell! She did this three times in a row with different objects.  Not only does she understand what the objects are and the question but she is able to hold on to the objects with assistance and let go of the correct one after feeling the objects.  We are so proud of her!  At home she practices hanging or holding on to my fingers but this is something we do not specifically work on at home. At the end of the week Cate will come back to the Institutes with us and we will get to learn her new program for the next 6 months. Today was a full day of lectures for parents.  We learned some great information.

I was so pre-occupied with Cate and the Institutes that I forgot to take pictures yesterday.  I will do better the rest of the week.

 

The IAHP

The IAHP

 

Trip to IAHP- Day 1 Travel

Yesterday we traveled from Louisville, Kentucky to Philadelphia, Pennsylvania for our intensive treatment visit at The Institutes for the Achievement of Human Potential. The flights went well but it was a long day. Cate did not want to sit in her car seat on the plane, no surprise. She is 2 now so we have to buy her a ticket. Overall she did very well for a day that started at 5am. We are staying with a very nice host family here. They train service dogs!  The house has 5 beautiful, well behaved labs. We are at the Institutes today. I will post an update after the day is over but so far the day is going great!

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Cate hanging out on the floor at the airport during our 3 hour layover.

All About Charlie

Charlie with shades September 2014

Charlie is our wonderful, spunky, loving, stubborn, and beautiful daughter.  She and Cate are identical twin sisters. I spent the morning with only Charlie today on our adventure of our gymnastics class.  Charlie has been very difficult in class so far and last week I tried a new tactic of timeouts every time she screamed at me.  Well, one warning then 2 minute timeout. We spent almost half of our time in timeout last week but it paid off! This week she was great!!  I was so proud of her.  Only a few small meltdowns and 3 timeouts.  I was pretty picky with her. She is the type of personality that if you give an inch she WILL take a mile:). Everyone in class, including her teacher were very surprised and happy to have less screaming.

Charlie with blanket August 2014

She is really growing up and becoming more independent. I think this week it has finally hit me that she is no longer a baby. Although she still wants her momma throughout the day. We are not taking her to Philadelphia this trip so we will be apart for 7 days. This is not going to be good for me but I am sure she will be fine. We will be facetiming (is that a verb now?) everyday and talking on the phone but it will still be very hard.

Charlie is so good with Cate, other kids and animals. She wants to be everyones friend. Even strangers at the grocery store she yells “hi” to. Charlie likes to talk very loud whether she is happy or sad. She has tried to give all the kids in her gymnastics class a hug and yells “no, no, no” when they run away from her. She gives Cate hugs and loves to pat her on her back just like mom and dad do. She is now giving the dogs kisses and gently pets them. She also loves horses! I believe she will grow up to be a very caring and nurturing women. I suppose you can think of it as some positive when having a sibling with a disability, it builds character even at the age of 2!

Mom and Charlie July 2014

Excited for our trip to Philadelphia and the IAHP!

Cate August 2014

Today is Tuesday and we leave early Sunday morning for our week at The Institutes for the Achievement of Human Potential in Philadelphia, PA!  I am very excited.  This will be our 4th trip to the Institutes and our 3rd trip taking Cate.  Since Cate is on the intensive treatment program we are able to go every 6 months for a week. Day 1 is a full day of evaluations for Cate.  She will see all of the specialists and they will update her neurological profile.  Day 2 and 3 will be a lecture series for  Ryan and I.  About 20 hours of classroom time learning more information to help our daughter.  Day 4 and 5, Cate will join us again at the Institutes and we will learn her new program for the next 6 months.  It is a busy week but a great one.

Cate has made some amazing improvements in the last 6 months.  I fill out reports every 3 months to send to the Institutes and it is a great time to reflect on how far she has come.  For example, 3 months ago Cate crawled an average of 10 feet each day. Now she is crawling an average of 115 feet each day! Now that she no longer uses her inclined floor she will have time for different exercises.  Let’s see what her day will look like after our trip.

Cate loves being at the Institutes!  Everyone talks to her like she is an intelligent little girl and she gets a lot of attention.  She just eats it up! We get to see some great friends we have made during our trips.  So as stressful as it might be getting prepared and traveling it will be a wonderful, fulfilling week.

We also get to pick up Cate’s respiratory patterning machine when we are there. It has been delivered and is ready for us to pick it up!

Cate and Charlie August 2014

Charlie and Cate playing