Tag Archives: special needs

Advocating for Joey . . .

10 Sep

There is something wonderful about finding a community for your disabled child. We have rejoiced as we have seen our son blossom at his three year college/horticulture program in Wisconsin. This is his second year.

Something really neat that happens is you start to realize how everyone in such a community plays a role in advocacy for the disabled. The disabled even learn to self-advocate.

In our advocacy, we are not all the same. I am Joey’s mom. That means that my natural bent is to advocate for Joey. It doesn’t mean I *can’t advocate for others, but just that my most natural stance is as Joey’s advocate. The more successful I am at helping him, the more I can generalize my skills to helping others.

Meanwhile, the staff are the ones who have to advocate for everyone, to keep things in balance, and to make sure that no one gets left behind, even if their parents are *not strong advocates for them.

That advocacy is to be expected and honored. It is a totally healthy part of Joey’s community.

So it is that our latest challenge is how to find time for Joey, who was left in the dorms with one other second year student, to be part of his second year class, which is living, mostly, in a group home situation on campus.

One of their classmates is actually in the third year apartments and that person turns out to be Joey’s best friend.

So you have best friends who are of vastly different abilities. Happens all the time in the real world.

And you have college, where best friends expect to eat together and spend time chatting every day of the schoolyear. That is how all of us have experienced college. That is how people with disabilities like to experience it, too.

The school is growing and that is a good thing. Having too many people in a class to fit them all in the group home is a good thing, too, showing that we need to be serious about fundraising and getting at least one more group home built on campus.

But we have our individual children with disabilities living in this situation. We need to have the wisdom of Solomon so their college experiences will be as normative as possible.

I am glad I am working with a valiant group of advocates for the disabled. This wonderful group of staff finds solutions to help our wonderful group of students. Every time.

With God’s help we do this . . .

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A Perennial Favorite on Special Needs . . .

4 Jan

A Perennial Favorite on Special Needs . . .

I have reblogged this before and probably will again. Everyone wants to feel included. Here is how to help families who have special needs to feel included in your community, wherever it may be.

My Hero!

24 Jan

Today I was privileged to take a long look into the milestones our beloved Joey has reached.

I did the Vineland Assessment of Adaptive Behaviors for him, in advance of a psychological testing session he will have before going off to college.  When he is at college, we will have at least four states between us, no matter how we complete the journey!  So this is a huge step!

I am so proud of him!  And so thankful to God for having brought us thus far.

Remember, when we first heard the word “autism” in 1996, when he was four, we didn’t know where the upper end of his scale would fall!

I spent years in prayer and worry that he would “top out” somewhere in the lower elementary school range of skills, both intellectual skills and life skills.  And the life skills part always scared me the most.

Now as I check mostly “can always do this” on the list of skills, I see my cup as 95% full.  Sure, he doesn’t drive and doesn’t meet friends socially without one of us facilitating it.  Oh, well.

And the part about maintaining the home can stand some work.  He might be quite capable of running that vacuum cleaner or that load of laundry.  It is just that I haven’t checked lately.  It is easy to get used to being busy at work, come home, and just do it all myself.  Easier than teaching the skill, but short-sighted.

But I must underline that all of this is a great, great comfort for me.  When a parent first hears about a disability, there is no guarantee about how far that child will go.  Everything is unknown.

Granted, everything is unknown with our other children, too.  They could become disabled after being born normally.  But the idea is that we have more assumed milestones for our normal children.

Joey was a big question mark.

And I am so very comforted that he has hit so many milestones, sometimes late, but almost always there.

We can call him a late bloomer.

And we can rejoice in our family and in our God!Image

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A Joey Story

1 Oct

A Joey Story

Jude 1:22, “And of some have compassion, making a difference.”

This is one of my “Joey stories” about our son, age 20 with Asperger’s syndrome (high functioning autism). It comes from when he was 16 years old and I was fighting breast cancer. We enrolled him in a private school (from homeschooling) so I could take a year off to be treated with surgery, chemotherapy, and radiation, and to heal. Here it is:

The principal thing I have noticed over the years about Joey is that he looks at the world in an “inside out” way from the rest of us. It’s not wrong, just different.

Sometimes I find Joey’s way of looking at the world utterly breathtaking.

Joey has had his challenges, as do we all, but he defies many of the odds for autism. A recent one was the supposed “lack of empathy” that people claim characterizes autism.

Joey is in a school small enough (less than 20) that the kids draw names for the Christmas party. After first thinking that drawing names had something to do with art (and being afraid to ask because he is a big tough teen boy, after all, hee hee!), he finally figured out he had drawn Moriah, a 12-year-old girl whom he describes as “too young to be a girlfriend but a really good friend.”

They then were awarded their “merit points” (the opposite of “demerits”) for the semester and were allowed to purchase gifts for themselves from a merit points store.

Joey didn’t realize I was already out shopping for Moriah’s gift so he used some of his merit points to get Moriah a gift that he put under the Christmas tree for her!

I think this was his own idea and it was so sweet it made me cry! He was so excited thinking he had gotten something she would really like. And I was so excited to see him being able to fully enter into someone else’s world like that.

I got her a bracelet from him, too, as I remember getting jewelry from my first crush in sixth grade (when we drew names for gifts) and how special it made me feel (my friend’s mother probably bought it, like I did . . .).

So we had a very happy young girl who became Joey’s loyal friend at that school. So sweet.

It Takes Time (Why the Process of Training our Children Matters)

27 Aug

It Takes Time

Psalm 12:6:  “The wordsof the LORD are pure words: as silver tried in a furnace of earth, purified seven times.”

This verse has often been used to explain how ancient silversmiths refined their silver, heating it at least seven times till no more impurities could be found in it.  The criteria for knowing when the silver was fully refined was when the silversmith could see his face reflecting in the surface of the liquid silver.  The example also lends itself to the process God uses with refining our lives, as living souls who are more precious to Him than silver.   He keeps patiently working with us, seven times or more per each lesson He wants to teach us, until we finally get it, until He finally begins to see the face of Jesus Christ reflecting back from the surface of our lives.

A modern way to explain the process of slowly training another person is called “hand over hand.”  As the mother of a special needs child, I am very familiar with this process, although it is not unique to training special needs children.  It consists in showing a child how to write, use scissors, color, do a zipper, etc. by putting your own adult hand over his or her little hand and completing the action with the child.  The act may need to be repeated again and again until the child learns.  Probably more than seven times!

One problem with people in our time-starved society today is that we have begun to believe that shortcuts are preferable to processes that require many steps and much repetition.  God seems to have set repetition up as a principle for learning, not for the sake of repetition itself, but for the sake of the interaction it takes to train children (and other people) that way.  And we want none of it.  We don’t regard such repetition as efficient.  And, truth be known, at heart we don’t regard it as worth our time to repeat the same instruction over and over as someone slowly learns.

Isn’t that funny?  God will go over and over the same material with us, for a lifetime if necessary, to help us get it, while we consider ourselves above doing all that in the life of someone else, even in the life of our own child.

My husband isn’t unique in this, so this is not singling him out in any negative way, but he recently saw an infomercial about a learning method that supposedly patterns the brain efficiently within several weeks.  It was only $100 and he sincerely wanted to try it, to increase our son’s chances of retaining material more quickly.  What he had forgotten about was how many such methods I had seized upon in my early years of homeschooling a child with autism.  If there had been a “miracle” learning method for autism, I would have found it back then.  And, truly, there are thousands of methods that claim to be that miracle, but I have long ago given up on spending $100 for each of them (and the time invested in learning that it is just another learning method, with some good and some bad aspects, like everything else in education).

No, I have not given up on educating our son, but have just realized that it is a long learning curve.  It is a long learning curve for children without autism, too.  Why would I have it any easier?

And why would God make it any easier, so we could teach our children something once, then go on autopilot and leave them alone in that area?  Isn’t it good to spend teaching and learning time together?  I think it is.

Look at the three years Jesus spent with His disciples.  Even when He sent them out by themselves in pairs, they came back rejoicing that demons were subject to them.  Was that what He sent them out to learn?  Or did He mean for them to learn that He was all in all?

In His very last week, the disciples rejoiced to see Him welcomed as a conquering king to Jerusalem.  In the very last week He had with them before He went to the cross!  He was teaching living through dying and they were understanding the lesson to be about conquering the Romans.  Yet, He never gave up on them.  He gently loved them into the men He knew they could become, by way of the Holy Spirit.

As teachers, we are to be like Him.  Never giving up, never thinking of our role as thankless, never flailing about for a shortcut to get those students out of our hair!!!  It is worth it to God to persevere with us; it is well worthwhile for us to persevere with our students, too.

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