Fragile X

A new school year

/ Sarah / Leave a comment

As many people are facing new uncertainties because of the coronavirus pandemic, more people than ever are considering homeschooling this year. Our local schools are requiring students to wear masks in the common areas of the school, but not in the classroom. Even so, just two days into the school year, one of the elementary classes is in quarantine after exposure. 

I can’t imagine what those families are going through. We are largely unaffected by the changes in most aspects of our daily life and homeschooling is not affected by them at all. I’m so thankful that we made the decision long ago to homeschool our children.

We started back to school at the end of July after a short summer break. I hadn’t planned a long break because two of the boys tend to lose skills over extended breaks. Plus, they all benefit from having more routine and structure to their days–and so do I.

So, what do you do when you are homeschooling a seventh grader and two kids who fall somewhere between kindergarten and third grade for most of their learning? Well, you do what works best for your family and your kids, but this is what I’m hoping to do this year:

  1. For Micah, who is in seventh grade and works well independently, I want him to gain more independence with keeping track of his assignments. He has been doing this for a couple of years with math, but I’m giving him a lot more responsibility this year. He will keep track of all of his assignments and I will check on them weekly.
  2. For Mark, I want him to master single digit addition, read more fluently, and slow down and pay attention to what he is doing instead of rushing to get it done. Goals with Mark are harder to quantify because like most kids with Fragile X Syndrome, what he is able to express is usually only a small portion of what he understands. I just have to assess what I see as his overall progress in less measurable terms.
  3. For Max, my goals are a bit different. He was already two grades behind in public school when we adopted him, but realistically he was much further behind in terms of math and reading skills. He also has focus issues and hates schoolwork. My goals for him this year are to master addition and subtraction facts up to 20 and progress through second grade math, and for him to do his best work without arguing or complaining.

 

Of course these areas are not the only things we will work on, but they are the goals that I see as the most important for the start of this year.

All lives matter

/ Sarah / Leave a comment

Today is recognized in many churches as “Sanctity of Life Sunday.”  A few days from now will mark the forty-second anniversary of the Roe v. Wade decision which played a large role in legalizing abortion in the United States.

Todd and I have been involved for several months in an ongoing project to start a pro-life pregnancy center in our area.  God has truly blessed this effort through the people who have been brought together to meet different needs and fill various roles.  We are making progress toward our goal to open a center that will help meet the physical and spiritual needs of women and families in our community.  We hope to offer pregnancy testing, ultrasounds, parenting classes, and counseling.  The purpose of the center is obviously to meet needs, but most importantly to glorify God by sharing the gospel (when welcome) while ministering to our community.

As the mother of a child who has special needs, especially one with a genetic condition, the subject of abortion is very dear to me.  When confronted with a diagnosis that their child will lead a life with some type of disability, many women (and men) choose to end that life in the womb.  Some would say they made the choice because they did not want the child to suffer.  Some would say because they have other children and their needs to think about.  Some would honestly say that they don’t want the added burden of raising a child with special needs.  Some, I’m sure, are encouraged by their doctors or by family members.  The reasons given do not matter, a child with special needs is every bit as much of a person as you are.  They are the person that God created them to be.

A single life ended is a tragedy.  One abortion is too many.  All lives matter.

(This is not intended to make anyone feel guilty.  If you have made the choice to have an abortion in your past, I pray that you will seek forgiveness and that God will grant you peace.  If you are pregnant and contemplating an abortion, I pray that you would choose life for your child.)

Choosing our words carefully

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Warning: The following is a bit of a rant.

I saw a headline today that really irked me. It said that a particular celebrity couple had been told that their premature child might “be special needs.” (I had never heard of them, and only skimmed the article, so this is not really about them or about anything that may have been said in the article.) That one phrase in the headline is what bothered me.)

“BE special needs,” “IS special needs,” “IS autistic,” “Down Syndrome child” –I hear or see these phrases on an almost daily basis. My son HAS Fragile X Syndrome. (He does not HAVE autism.) He HAS special needs. He IS NOT special needs. Mark IS a gift from God. He IS and eight-year-old boy. He IS precious to us. He IS a child who HAS special needs.

I know that most of the people who use these labels (and that’s what they are) do not mean to disparage children and adults who have differences and disabilities. (And having a husband who is a journalist, I can certainly appreciate the need to make a headline fit.) But I think what concerns me the most is how many parents of children (and adults) with special needs use this terminology to refer to their children. And I can’t help but wonder how much this leads them to subconsciously identify their children with the special needs that they have, instead of identifying them as a person, a child, who has difficulties to overcome and compensate for, and simply to accept for who they ARE.

We need to choose our words carefully not just for the sake of those who hear them, but also for our own sake.

Alright, the rant is over.

Home schooling when you aren’t home

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We spend a good bit of our time away from home.  Mark has speech and physical therapy twice a week, and occupational therapy once a week. (For more about that read here.)  The five appointments, plus the time spent traveling to and from and getting everyone ready to go, add up to over five hours per week.  That takes a pretty big chunk out of every week for us.

Although I consider Mark’s therapy to be part of his schooling, it doesn’t count for his siblings who are just sitting in the waiting room.  Matthew is in tenth grade this year, Maggie is in eighth, and they do a lot of their work independently.  They usually bring some of their school work with them to work on during Mark’s appointments.  They usually bring it, but whether or not they do any of it depends largely on whether or not the television is on in the waiting room.  Last Thursday it was off and they both quietly worked their way through their math lessons.  When we were here last Tuesday, the television was on; and although they had their math books out, they didn’t really accomplish much. On days like that, they have to spend more of their afternoon on schoolwork  instead of having free time to play or read (unassigned books) or work on other things.  They are old enough that I let them make the choice to waste their time in the morning and suffer the consequences of an afternoon spent on school work instead of fun.

At six, Micah is young enough that I really don’t push a lot of “school work” on him.  We do have a math curriculum that we use and a phonics workbook.  I mostly let him go through them at his own pace as he is interested.  Some days he does four or five pages in his workbook, some days he does one.  He likes to take a backpack with him to therapy, but he rarely does any of the work he brings.  He likes to watch the TV and most of the shows that are on while we are there actually are educational for a six-year-old.  He also reads a lot of the books in the waiting room, most of which are about his reading and interest level.  This way he gets some reading in, too, and doesn’t even realize he is doing “school work.”

Sometimes we listen to audio books in the car on the way to and from therapy.  Some of our favorites are from the Lamplighter Theatre Series, such as “Sir Knight of the Splendid Way.”  They are really well done and entertaining for all ages to listen to,  and they are such incredible stories.  We also listen to classic audio books that we have downloaded from LibriVox.org for free.  They are as well-dramatized as the Lamplighter ones, but they are free and have a wide selection.  (One word of caution, they have all kinds of audio books on LibriVox, so you may want to monitor what your children listen to from there.)

I try to lower my expectations of what we can actually accomplish on therapy days while trying to balance that with what I know we need to get done on a weekly basis to reach our goals.  Do you home school away from home?  How do you manage it?

 

Fragile X Syndrome

/ Sarah / Leave a comment

Fragile X syndrome is the leading inherited cause of developmental delay and cognitive impairment.  It occurs in about one out of every 4000 males.  (For more information visit the National Fragile X Foundation.)

Why am I telling you this?  Our middle son Mark was diagnosed with Fragile X Syndrome when he was 2-1/2.  Although he is almost nine now, in many ways he functions at a younger age, especially in his language skills.

I suppose I could write about how Fragile X Syndrome affects our daily lives, and how things are different as a parent of a child who has special needs.  But Mark is who God created him to be, and Fragile X Syndrome does not define him any more than diabetes defines someone who has it.   So, Fragile X Syndrome doesn’t AFFECT our daily lives, it is part of our lives, part of who we are as a family; and yes, it makes our lives different from what some would describe as “normal” or “typical.”

For example, we spend over three hours a week (nearly five if you count driving time and getting everyone ready to go) at therapy appointments: occupational, speech, and physical therapy.  This means that we don’t do all of our home school at home.  It also means that we can’t be quite as flexible with our time and we may miss out on some activities that we would otherwise have time to do.

We seldom do things spontaneously.  Fragile X Syndrome typically causes anxiety and sudden changes to routine often increase anxiety.  Mark usually handles routine changes–especially if it’s something fun–better than what I have heard is typical for people with Fragile X Syndrome.  (I think this is partly because he knows that wherever he goes or whatever he does, the rest of the family will be there.)  When we do something out of our normal routine, we usually have to limit it to one variation at a time (i.e. run only one errand on our way home) or Mark gets overwhelmed.

I would list other ways that having a child with special needs makes our lives different, but honestly this has been our normal for a long time and I don’t really know the difference anymore.  God has blessed us with four children who are each special in their own ways.