Archive for November, 2013

So Excited for Pookie

Tuesday we made the journey to Tulsa for two appointments at Therapy Works.  I am so happy with how it is going.  Pookie was fitted a few weeks ago with leg braces referred to as “rabbits.”  Rabbits are a brace that stabilizes the ankles, supports his arches which collapse as he walks, and the top portion of the braces resemble rabbit ears.  The “ears” are extensions that come up the sides of his calves, leaving the front and back open.  One of the functions of these supports was to prevent him from toe-walking, which he does nearly constant. From the first day that he wore the supports, Pookie continued to toe-walk.  Within a couple of days, he had the front of the support that is under his toes looking curved upward.  It was clear after a few days that these were not going to work.  His PT then ordered a new set of supports called “kangaroos” which provide more restriction of movement.  Unlike the rabbit style that has the open back at the calves, the kangaroos are solid. On Tuesday, Pookie was fitted with his new supports.  Laci, the therapist that fitted him, had Pookie walk in them so she could see how he managed.  Immediately, he was toe-walking again.  She was very surprised.  After getting a second therapist’s opinion, it was decided that if he is still toe-walking when we go back next week they will add more rigid support under the toe area to hopefully prevent him from walking on his toes. After that appointment we had a light lunch before going to his OT appointment.  His OT, Amanda, had arranged for a rep to be there so Pookie could be measured for a medical stroller.  What a blessing it will be!  He doesn’t have the endurance to go places where a lot of walking is involved without a wheel chair or some other assistance. He is tall enough to not fit in shopping carts or standard strollers anymore.  So, the medical stroller is going to be a huge improvement for us.  He will be able to enjoy outings much more often.

After the rep was finished, Pookie did some FloorTime therapy with Amanda.  By the time they were done, he was singing in his own way the song “The B-I-B-L-E”.  During their play time, Amanda would stop at intervals and wait for him to sign “more” for her to continue the play.  He loved it.  At that time, she had him swinging in round hammock style swing.  He was laughing and having a lot of fun.  When his therapy time was done, Pookie actually was resistant to leave.  He wanted to stay and continue to play with Miss Amanda.

It was a great day.  The most productive so far.  I can’t wait to see how he responds and grows through the therapy over the next year and beyond.

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Gaining Independence

Since finding out that Pookie was autistic, we have been working at helping him to gain as much independence as possible.  There is such a stigma attached to Infantile Autism.  Unlike those with the higher functioning autism spectrum diagnosis, kids like Pookie are often underestimated in what they are capable of.  Many times, a parent of a severely autistic child will be given little hope.

Last September, a Pre-K school teacher told me to not worry about teaching him academics in our homeschooling.  She felt that he would be better served by focusing on life skills only.  Her reason? She said that by focusing on the life skills, we will help him to be less of a burden on his caretakers in the future.  Her words were cutting, but I have had to take a step back as really examine her thinking.  Unfortunately, unless your child is moderate to high functioning, this attitude is not uncommon.  It doesn’t mean that those who say it are correct, but possibly uninformed.

A reality that we face with Pookie is that his ability to do a skill can change literally from one day to the next.  For example, he was learning to feed himself then lost the ability after an illness.  It is like someone erased the knowledge of how to perform that skill from his mind.  After a time, he slowly regains the skill.  It takes a lot of work though, as well as a lot of patience.  You have to look past the idea that he could feed himself before the illness and start over from square one.  Sometimes, the amount of time that it takes to regain the skill is far less than it took to learn the skill the first time.  That is a blessing in and of itself.

Most recently, Pookie has been working on the self-feeding issue……again.  He was only using a spoon or fork for about 2 months before he was ill with a fever in September.  Ever since then, we have had to work with him to re-teach the skill to him.  Suddenly, after a couple of months of working with him, I was able to get this picture.


Pookie loves peanut butter.  I usually buy several of the small jars from a $1 store each payday.  I had noticed that the larger jar of peanut butter was getting low a lot faster than normal.  Then, I found out why.  Pookie had learned to remove the lid, grab a spoon from the drying rack and feed himself the peanut butter.

Watching him, I realized that he would do this with peanut butter because it stuck to the spoon.  Pookie gets easily frustrated if the food he is eating falls off of the utensils.  The stickiness of the peanut butter made it the perfect food for him to eat on his own.

I also noticed that he is able to hold these little peanut butter jars much easier.  Unlike a plate, bowl, or even the larger peanut butter jars, these little ones offer him more independence.  With that in mind, I saved several of the jars to use as dishes for him.  I have a baby food grinder that I bought back when Little Miss was a baby.  It allows me to take any meal and turn it into a finely chopped food that is similar to a junior baby food consistency.  At that texture, the food stays on his spoon far easier just as the peanut butter does.  I place his meal into the jar and he is able to feed himself.

This may seem like such a little thing.  Pookie is 5-1/2 years old.  What people don’t always realize is that developmentally, he is far younger than his chronological age.  For him, this step towards becoming more independent is huge.

With this single skill, he is able to take more control over his eating habits.  Being able to self-feed eliminates nearly all the frustration that he had been feeling during meal times.  He doesn’t have to wait for someone to feed him each bite.  He is able to do it for himself.

Another self-feeding development is that he is once again feeding himself finger foods.  If we go to Wendy’s for lunch, I just have to cut his food into bite size portions.  He can now feed himself, as long as someone touches his arm or shoulder.  We jokingly refer to it as his start button.  Just another autism quirk he displays.  As long as you touch his arm or shoulder, he will feed himself.  If you don’t touch him, he will wait until you do or will start getting fussy as he waits.  We went through this stage before.  It doesn’t last terribly long and always proceeds him becoming fully independent in whatever skill he is working on.

It is a journey.  I am constantly amazed at how many basic skills come seemingly by instinct in typical kids.  Seeing how hard Pookie has to work to obtain these seemingly natural skills makes me more aware at just how intricate a child’s development can be.  Milestones that others take for granted are hard work for Pookie to achieve.

Each skill mastered, however big or small, are simply a step towards him becoming as independent as possible.  We have high expectations for Pookie.  We are realistic, yet we refuse to set the goals too low for him.  If we expect little from him, he will gain little.  If we expect him to reach the stars, then he will continue to work towards that goal.  He may not actually reach the goals, but he will be much further down the road than if we expected little from him.

Our goal for Pookie is for him to have a life as an adult where he needs little assistance.  Who knows? Maybe one day he will be able to overcome his challenges enough to marry and have a family of his own.  There is only one who has the authority to set limits on what Pookie will be able to do in his life. That authority belongs to the one who created Pookie.  No, I don’t believe the Lord made Pookie autistic.  I do believe that He allowed it for a purpose.  I truly believe that one day Pookie will be able to share his testimony of what he has been able to accomplish, in spite of being autistic, with the Lord’s grace and blessing.

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Little Miss made homemade noodles for the first time yesterday. She did such a great job! Here is the recipe:

Homemade Noodles

1 cup flour
1 egg
Pinch of salt

Place flour in a bowl and make a well in the middle. Add the egg and salt. Mix together adding a little water at a time until you have a soft dough.

Turn out dough onto a lightly floured surface and knead until not sticky.

Roll the dough thin, about the thickness of a dime.  Cut into strips about 1/4″ wide.

Dust the cut noodles lightly with flour to prevent sticking together. Spread out on table or in a pan to dry or cook immediately. 

Recipe makes enough noodles for about 4 servings if used as a side dish or added to a soup.

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Little Miss is in paper doll heaven. While looking for printable dolls to use for flat travelers, we had found the Making Friends website. Ever since, she has had fun putting together dolls to play with. With the amount of clothing, hair, and theme variations I doubt she will be bored anytime soon.

We took a few of her dolls with us to the Mardel’s Christian book store in OKC.  There, we were able to laminate the finished dolls. She loved it!  A surprise that I have planned for her is to print out the nativity dolls set. I know she will have a lot of fun putting that together and playing with it.

It is so fun to watch my daughter find joy in the same things I enjoyed as a kid. I clearly remember the paper dolls I had. I kept them in a shoe box and could spend hours playing with them. Many were taped to repair them from all the use they got.

What started the paper doll interest for Little Miss was reading about the Ingalls’ girls playing with ones their Ma helped them make from paper during the winter.

We are so blessed to have a daughter who finds the simple things to be so entertaining. She would be happy if we gave her an envelope full of printed out dolls with all the clothes and such for Christmas. 

Next doll to find for her is biblical characters. She has been asking for some. So, now the hunt for ones we can use to go along with Bible stories.

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Potty Training Our Autistic Son

And the adventure begins..again.    Trying to potty train a very developmentally delayed child is very distant different than when I trained the other kids.  Pookie doesn’t let me know when he needs to have his pull-ups changed. So, I am going to have to put him on the potty chair every 15 minutes and figure out his body’s routine.  I am keeping track of when he eats and drinks as well. Eventually, I will see a pattern of the time intervals for how long after he eats a drinks he needs to use the potty.

Once we have his body’s routine figured out, potty breaks will be added to his visual schedule.

To keep the day as low-key as possible, we are doing the crafts portion of the unit studies today. Little Miss will also be working on math and reading as well.

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