October is Down Syndrome Awareness Month!

This October, I am extremely proud of my little man with Down syndrome.  See, he is in kindergarten.  In a regular kindergarten class.  He has an unbelievable teacher, she has a paraprofessional assistant, and he has and a paraprofessional who is a former teacher.  Talk about a "Dream Team!" 

We have been working for a month or so on sight words on flash cards.  He and I have both gotten very frustrated and discouraged because he just didn't seem to get it.  Yesterday at therapy, I was explaining our frustration and discouragement with his OT.  She shared with me a few notes she had prepared for an IEP meeting for another boy with Down syndrome.  I am going to share them with you:

Children with Down Syndrome:

They are very visual learners.  They take in and process information more effectively when provided visually.  They need a clear understanding of what is expected from them- visual examples are a must.  If they do not understand what is expected or feel that they can't be successful, you risk shut down or behavior trouble.

Positive reinforcement is a must.  Children with DS often do not feel successful on their own, they look externally for cues to let them know that they are doing a good job and they need encouragement.

Children with DS are very perceptive- they are very aware that things are more challenging for them and they know when they do things differently than their peers.  They watch and take in lots of information visually- but remember that they do have gross, fine, and visual motor delays.  It is important to help them feel "a part" of their peers.  A special job is good- often the library helper is good.  Let them have a role that they feel good about.

Fatigue- Children with DS have low tone (hypotonia).  It is a bummer, but they do.  Gravity is very heavy on a kiddo with DS and they fatigue quicker than most kiddos.  Often they like to use external supports when they are tired.  Think about it- when "we" get tired, we avoid activities more.  Avoidance=Behavior trouble most of the time, but especially when you have expressive language delays. 

Pressure- Wow, do kids with DS feel pressure!  They perform much better when the pressure is off.  They prefer the carefree, laid back environment and often do better when things are fun or they are perceived as the helper.  Remember, they are perceptive and really hard on themselves!

Boundaries- Kids with DS don't have the best endurance and they like purpose.  So boundaries are good.  When doing non-preferred tasks, make sure they know it is not an ongoing activity but that it has an end.  Let them see that they have to complete 3 and circle the ones they have to complete with a highlighter, etc...

Purpose- kids with DS really like to know the purpose.  Sight words may not make sense until they are in a sentence. 

Working Memory- Kids with DS struggle with working memory.  Math is tough.  We have to remember that they are visual learners and go with it.  Manipulatives would help a lot!

How do we handle the behavior?  To begin with, if we follow all the above mentioned tips, hopefully the behaviors will decrease.  Remember, we have to know why the child is behaving poorly to help them.  Also remember that kids with DS have expressive language delays.  Still though, you will have some behaviors, it is going to happen and it is important to handle the behavior appropriately or things could get way, way worse.  This is when they will shut down and make it much worse.  It is important to be patient with kids with DS, often when presented with opposition from a child with DS, I give the child a choice (both of which I would be okay with) and let them know that I am prepared to wait until they are ready to complete the choice 1 or choice 2.  It has been my experience that the wait time decreases significantly as we progress.  Again, lots of praise is important when we have success. 

Social- Kids with DS are so social, which is another strength that we should use when working with them.  When they do a good job writing, coloring, etc. they love to share their work with their peers.  They like us adults, but boy do they ever love the acceptance of their peers.

Did you read the part about purpose?  "Sight words may not make sense until they are in a sentence".  That was the exact problem we were having.  Boy, does this lady know what she is talking about!  So, she took his sight words that we have been working on, added one that said "Bob" and one said "bunny" and we made sentences.  My sweet little boy read those sight words in sentences every way we rearranged them!  "Bob is a bunny.  Bob is a fun bunny.  Bob is fun.  I like Bob. I like bunny. etc, etc...  My baby boy, with Down syndrome, in kindergarten, is reading!  It just had to have a purpose.  Just like writing his name over and over has no purpose, but writing it on his assignment does...Two birds, one stone. 

"I like Bob."

 

 

 "Bob is a fun bunny."

 

I share all of this with you for one reason: to educate you about Down Syndrome.  So, remember to praise and praise often!  We were dancing and crying last night when he read to us!

 

And it Gets More Ridiculous

If you read my earlier post, you know about my frustration with Katie Beckett Medicaid. After digging through the Katie Beckett paperwork, there are a few things that infuriate me about it.

-The packet included a voter registration form. Tell me, what business is it of DFACS if the applicant, in this case, my 5 year old son, registers to vote? I see several problems with this. One, is that this is a blatant attempt to register a certain demographic to vote. I would make an educated guess that a high population of applicants for Medicaid vote Democrat. Two, this seems like a perfect situation for voter fraud. Are these registration forms checked properly? What does DFACS do with them once they receive them? Three, who is paying for the three pages that this voter registration application costs? It probably costs $.10 for those pages. Add all the Medicaid applicants each year, and that equals hundreds if not thousands of dollars. Waste. Four, KB Medicaid is only for children under the age of 18. There is no reason to send this to a person who is not eligible to register to vote. DFACS should not be in the business of soliciting and processing voter registration.

-The packet contained a questionnaire about our whole family's income and assets. Now, specifically for KB Medicaid, family income/assets has no bearing on the eligibility. See, KB was created for people with special needs whose family income excludes them from regular Medicaid. The questionnaire wanted our bank account numbers, make/model/value of our vehicles, value of our home and land, value of my husband's farm equipment, value of my husband's farm crops, value of boats or recreational vehicles, types of life insurance and their values, our family income, etc. First of all, I am not applying for my family to be covered by Medicaid. Just my son to be covered under KB. So therefore, it is none of the state's business the value of ANYTHING! Period. A simple statement of our family's annual income to determine ineligibility for regular Medicaid should be sufficient. Who in their right mind would rather go through all the hassle of KB Medicaid if that person is eligible for regular Medicaid? Doesn't make sense.

-The packet had a several page form about health insurance. Again, KB Medicaid eligibility is not determined by health insurance. But, in our case, Cohen doesn't have it. They will not cover him. That's why I apply for this ridiculous KB Medicaid. But the packet wants all of our family health insurance information regardless of Cohen's coverage. They also want copies of our insurance cards. Now, they will take my word that Cohen is registering to vote and meets eligibility requirements, but won't take my word that he in ineligible for health insurance coverage under our policy? Again, all of that doesn't matter. That is not considered when determining his eligibility. So, why do they need to know it?

I think that this is a profiling and data collecting attempt by the state and federal government. See, I talked to my state senator last night, and most of this is federally mandated. I'll keep you posted with what I find out. I am sending the forms to my state senator for him to review. Hopefully we will be able to streamline this application/renewal process. I read the State of Georgia Katie Beckett Policy Statement. I also read some other states policy statements. Georgia's is the most complicated. Of corse. Leave it to Georgia to make something that should be simple the most ridiculous and complicated.

Katie Beckett Medicaid Ridiculousness

For those of you who have no idea what I am talking about, be thankful. For those of you who do, you know exactly what I mean by ridiculousness.

A little background information for those of you who are fortunate enough to not know what Katie Beckett Medicaid (formerly known as Deeming Waiver) is. Because we have private health insurance (we pay for it, and it is not provided by our employer), the insurance company can chose to deny coverage to anyone for basically any reason. In Cohen's case, he was born with the pre-existing condition of Down syndrome, so our insurance policy would not cover him. That means no medical coverage for him. At all. So, years ago, there was a lawsuit and a type of medicaid was created for people with certain conditions to be covered under medicaid regardless of the family income. Trust me, if I could pay for an insurance policy to cover him, I would. Medicaid approval is the most time consuming, frustrating thing I do for my son.

But, unlike insurance, where you keep it as long as you want it; Katie Beckett Medicaid must be renewed every year. Ridiculous, right? Nothing changed. He still has Down syndrome. Our insurance still won't cover him. I can expect that envelope every spring to come. That envelope means hours of paperwork for me, his pediatrician, therapists, etc. because while we strive daily to prove to the world that Cohen is smart, capable, and making excellent progress, we have to prove what Cohen can't do to continue his coverage. We have to prove how far behind he is as compared to typical peers. Wow. That will really make a mom feel good.

About two weeks ago, I received a letter from DFACS reminding me that it is time to renew and it gave me an online form to complete. Hmm. That has to be easier than the paperwork I had to complete in the past. I logged on, spent an hour or so answering questions and filling out forms. Easy enough.

Then, yesterday, the envelope arrived in the mail. Great. Just what I have time for- hours of paperwork, running around having the doctors and therapists fill out paperwork and picking it up- instead of planning field day, pre-k graduation, Mother's Day, my husband's birthday. And the worst part of it all- the questions and forms that I spent an hour filling out are included in the paperwork to be filled out again. I nearly lost it when I read through that. Seriously? Could they not use what I filled out online? Needless to say, I am ticked off.

So, now I will be spending hours filling out forms, typing narratives, running to and from collecting therapy notes, delivering doctor forms, etc. All because my son has Down syndrome. All because this system can't use common sense and note that since nothing has changed with his condition and prognosis over the past year, there is no reason to make us all go through the hours of paperwork AGAIN.

Last year, I added up my time spent on his application. I spent over 30 hours working on the 137 page packet that I sent in. Tell me, who has time for that? I sure don't. But, blogging about it isn't going to get it completed. Time for me to begin filling out the 28 page packet that I received in the mail yesterday. Time to email his six therapists for copies of therapy notes. Time to prepare forms for the doctor to fill out. Time to type his narrative. Time to make copies of the psychological evaluation from last year. Time to make copies of his IEP.

Be glad you have never even heard of Katie Beckett Medicaid.

Catching Up

Life got busy this school year. Here are a few photos to help fill in the gap.