Tag Archives: Learning Disabilities

H is for HEARTS

Hard to believe, but last weekend a Goodwill store opened here in our little corner of the woods.  I went by and checked it out and . . . score!!!  I’ve been looking and looking for heart-shaped ice cube trays.  It was just what we needed this week as I scrambled for H word activities.









I bought a “Bucket of Bling” plastic gemstones at Wal-Mart a few weeks ago, and I was delighted to finally get to use them.  I pulled out the hearts and Noah practiced 1 to 1 correspondence.

Notice the heart flashcard?  I find the easiest way to deal with my anxiety about Noah starting homeschool kindergarten is to just jump in and start exposing him to the things I want him to learn.  It’s never too soon to teach our children that letters make words and words represent objects and ideas.  I’m making and using flashcards to go with our alphabet activities.  Right now the object is exposure to the written word.  Eventually he will start distinguishing the letters and words; but because he is on his own time table, I don’t know when that will be.  My aim is to make sure that at the moment he is ready to start with phonemic awareness, the words are already and have already been in front of him. 

 Sure, our home is going to look like a page right out of a Richard Scarry book for a while, but it’s for a good cause, right?  🙂

It Never Occurred to Me

Romans 8:26 – www.biblegateway.com

“26 In the same way the Spirit also helps our weakness; for we do not know how to pray as we should, but the Spirit Himself intercedes for us with groanings too deep for words.”

It never occurred to me to ask God for a physical therapist to add to Andres’ Chiari team.  I had been wondering how in the world to find out if any of his learning or behavioral idiosynchracies were linked to his Chiari.  Since he has been homeschooled from birth, there is no one else who has assessed him and can give me any input about potential weaknesses or deficits.  I am often left wondering if his behavioral and learning differences are just normal boy (he’s our first boy) behavior or if they are a learning disability or effect from the Chiari. 

I have suspected I am missing something in the Chiari picture and wondering who in the world could fill in the blanks for me.

The director of the therapy center I take Noah to asks about my children, and I had shared with her Andres’ Chiari 1 malformation and syrinx diagnosis.  I also mentioned to her that I was concerned that he might have some deficits that we were overlooking, but I wasn’t sure how to positively identify and address them.  She offered to have him go through full PT, OT and speech therapy evaluations, but I had a nagging feeling that Andres needed something more specific.

So the next time I saw this wonderful woman, she told me that she had mentioned to the new physical therapist Andres’ condition.  Turns out the new PT did a rotation at a children’s neurology clinic and had a group of children there who had Chiari malformations.  Some were pre-op, some were post-op.  So she is intimately familiar with Chiari and the effects it has on the rest of the body. 

And if that wasn’t enough, she followed up that rotation with a rotation at a rehab where she worked with two young adults who had Chiari malformations. 

Meeting with her was such a blessing.  Together we marveled that God had been weaving this meeting together and that He had placed her at the children’s hospital with that specific group of children and at the rehab with those particular Chiari patients and then at the very therapy center that we are involved in, and into that specific meeting with a mom who very much needed to hear what she could tell me.  She said in all her schooling she probably read a paragraph in a textbook about Chiari, nothing more.  After working with the patients she mentioned, when it came time for her to present, she chose Chiari malformations as her topic.  So on top of her weekly sessions with Chiari patients, she also had done extensive research on the subject.  Such a random topic, such a random meeting, except for the knowledge of God’s soverignty.

I loved the fact that in talking with me, this young physical therapist said that when the director of the therapy center mentioned Andres’ story, this therapist knew she HAD to meet with me.  Talk about being fired up and passionate about her job!!!  Her strong, strong, strong recommendations to me are to have the neurosurgeon refer Andres to a neuropsychiatrist who can test all of the areas that may be effected by his brain condition.   If he has surgery, it will be important to also do a postop evaluation.  If he doesn’t have the surgery, then it will be this baseline evaluation that we can turn to if Andres suddenly has changes in his presentation (balance, coordination, short-term memory, mood swings, executive function, etc.).  If there are drastic changes, it will paint a much clearer picture of whether or not the Chiari is causing the trouble if we can compare findings.  This will also allow me to address his specific deficits, if he has any, through the work I do with him at home during homeschool and also get him the appropriate therapy he may need.  I suspect he will wind up with OT and possibly speech therapy for language issues. 

For now, our insurance changes a bit in July, so I’m going to wait until then to set up an evaluation with the physical therapist.  But he’s definitely going to have one.  How cool that he can be evaluated by a lady who has worked with Chiari kids and will be familiar, not by textbook scenarios, but by hands-on-experience with the effects that Chiari malformations  can have.

I didn’t know to pray for a physical therapist.  Thank the Lord He does not only answer the prayers I lift up to Him, but He also answers the prayers of my heart in the ways He knows are best.

Modified Beading Activity – Occupational Therapy (OT) at Home

One of the things I’m learning is that when people say their child with Down syndrome is “on grade level,” it doesn’t mean their child is doing exactly what the other children in his class are doing.  Often activities are being modified in the classroom to ensure the child is successful.

Successful at grade level activities?

I’m all for that.

Stringing beads on a shoestring is a common pre-kindergarten activity, but Noah’s delayed fine motor skills and high level of frustration make this activity too difficult for him.  So, do we wait until he seems ready?  This mama says NO!!!

Let’s give him a baby step.  (This is actually Bella, who just HAD to be included.)

Activity:  Stringing beads on a pipe cleaner.


  1. Pony beads
  2. Pipe cleaner or chenille stem cut in half
  3. Thread spool (with or without thread)
  4. Velcro dots
  5. Cardstock or paper


  1. Place Velcro loop dot on the bottom of the spool.
  2. Place Velcro hook dot on the cardstock or paper.
  3. Place spool on paper, matching Velcro dots.  (This holds the spool in place, making a stable holder for the pipe cleaner.)
  4. Fold pipe cleaner in half and insert into the middle of the spool, raw ends down toward the paper.
  5. Twist pipe cleaner at the top so that it is tight enough for a pony bead to fit onto it.

Activity:  Give your child a selection of pony beads and have him place them onto the top of the pipe cleaners.  Have him push the first bead down so that it is resting on top of the spool.  The doubling of the  pipe cleaner will increase the resistance of the beads, thus making it easier for your child to manipulate them.

A step up:  Instead of cutting the pipe cleaner in half, leave it the full length.  Still double the pipe cleaner to put it in the spool.   Have your child string beads on this longer pipe cleaner.  The increased length will result in more flexibility, which will increase the difficulty of this task.

Once that is mastered (over a number of sessions), do not double the pipe cleaner when you put it in the spool, thus resulting in even more flexibility and difficulty.

Finally, allow your child to string beads onto the pipe cleaner without putting it in the spool.  Once your child has mastered this, he should be ready to move onto stringing beads onto shoe strings.