Another Ologist

Ashley had her annual physical last week, and I sent the doctor to solve yet another of her medical mysteries.

In the last 9 months, she has gained 16 pounds.  However, her diet has remained the same.  Her level of activity remained the same.  And there were no medication changes.  After the first few months of noticing a weight gain, I did make some minor tweaks in her diet, grilled chicken instead of chicken salad, for example.  She only has a small range of foods she will eat by mouth, so it's not like I could switch her diet too much.  I also tube feed some vegetables and fruits to make sure her diet is balanced.  And the weight still continued to increase.

Then, I added in some more exercise - 10 minutes or so on the treadmill, asking the teacher at school to increase the amount of walking (versus wheelchairing) that Ashley does.  We even got a small trampoline for her to bounce on and she loves it.  But still the weight continued to increase.

In addition to the weight gain, she has also begun having significant issues with constipation.  Even though I tube feed high fiber blended foods and prune juice, the relief has been minimal.  I am not a fan of Miralix, but even the times that I have used it, it really didn't help much.

So at her checkup, I asked the pediatrician to do some blood work to check her thyroid function.  And lo and behold, one of the two tests came back abnormal and indicating that she could have hypothyroidism (underactive thyroid).  If that truly is the case, the weight gain and constipation might have an explanation.

The pediatrician has referred us to an endocrinologist, one of the few types of doctors Ashley has not seen in the past, but unfortunately the first appointment we could get is late March.  I am hoping that the explanation for her symptoms will be as simple as hypothyroidism because that is so easily treated (one small pill a day).

Please keep Ashley in your thoughts and prayers, and keep your fingers crossed that this medical mystery might be one of the easier ones to solve for her!

Special Exposure Wednesday

I want Spring, but I must admit that I did enjoy the snow this year.  Much more than we usually get, and Chip was able to build this snowman sitting in Ronnie's old wheelchair.  But now I want tulips and grass and my garden!

This One's For You, Ronnie

Ronnie, everytime you roll your eyes or complain when I don't 'fix' things for you, everytime you get angry because I don't make the hard things easier, and everytime I tell you to stop playing video games and get out and do something, I will also show you this.  Hopefully one day you will thank me.

Friends for Life

OK, let's end this week with a good old fashioned happy cry!!!

OUR Works of Art

I've always considered my children works of art, and I bet you do also. Watch this video but substitute 'my children with special needs' whenever he talks about his 'art'. Then let me know if while watching (and substituting) you found yourself saying "YES, that's exactly it...exactly what we parents of children with special needs do every single day!"

Special Exposure Wednesday

Ashley won't let her nails be painted (that whole sensory defensiveness thing), but she did celebrate Valentine's Day by wearing red tipped rubber fingers!

You Don't Matter

My day started with a trip to Michael's craft store, and this is what I found in the parking lot.

Then I went to another strip shopping center to take a look at TJ MAXX.  Next to TJ MAXX is a storefront for an auction company.  I'm not sure exactly how the auction and subsequent purchasing happens, but there are always people loading items into pickup trucks.  And those pickup trucks are all parked in the four handicapped spots allotted for the shopping center.  None of them have handicapped license plates or placards displayed.

Assuming, however, that there had been a handicapped parking space available, getting a wheelchair into TJ MAXX would still have been impossible.  The ramp from the parking area to the sidewalk leading to TJ MAXX was covered in piled snow.  And, the sidewalk which led to the store had not been cleared of snow or ice.  Only the very front entrance, the one people without mobility aids use, and the one with a 5 inch curb, had been cleared.

It's obvious a great many merchants don't care whether or not people with disabilities can get into their stores.  Maybe they make enough money from their non-disabled customers to not really care.  But how can individuals that work there, that shop there, not care?

I'm past the point of attributing these oversights to ignorance.  I believe we just have a lot of callous, self-centered, non-caring people in the world.

Bravado?

Last week, I wrote about children from the foster care system lacking motivation. There is also another trait I have noticed, at least in two of my children, and I wondered if you had also.

The two sons I have adopted, Corey and Ronnie, share a similar trait of having to always be the best, or at least trying to convince everyone, including themselves, that they are the best. Ronnie, for example, gets pouty if he doesn't score the most points in a wheelchair basketball game. He also seems to get angry if another team member plays a better game than he. Corey will do his best, even going as far as stretching the truth, to convince everyone he knows more about a particular subject than anyone else. His opinion, his knowledge have to be accepted as truth or like Ronnie, he can get very quiet and pouty.

I haven't noticed this trait in my girls, but I believe that is related their developmental delays. Or could it be a "boy" thing? I have never seen this trait in my birth son, Chip, but I have seen it in other children that have been adopted from the foster care system or from abroad.

Is it a fear that if they are not the best, they will be abandoned yet again? Is it an attempt to convince themselves and others of their worthiness to exist, especially to exist as a part of a family? Is it a search for love and acceptance?

What do you think, and have you also noticed this trait in adopted children?

And Again....

Silly me, I thought that living in the South meant this wouldn't happen very much.  This is the third time this Winter, and there is still a month to go until Spring...

 

 

Special Exposure Wednesday

The last of my Christmas gifts arrived in the mail last week!  I can't wait!!!

Needing To Dream, Then Act

Ronnie starts a new class at school today - modified automotive technology. It's yet another step to help him find something he would like to do once he leaves school. Prior to stating an interest in the auto tech class, he had said he wanted to learn food prep and service. I knew that wasn't really what he wanted though. That interest was just a sideline to interest in a girl that also stated that preference. I don't think that is the case with the auto tech class, so I am really hoping he will study hard and consider this an employment skill for his future.

One of the things that has always hurt my heart, so to speak, was the thought of children aging out of the foster care system and having no skills, nowhere to go, no future. Ronnie, of course, is out of the foster care system now, but did spend 14 years there, and I'm starting to notice something about kids who spend a long time in foster care. It seems that a good many of them have no drive, no plan for their futures, no dreams.

I've seen it in three of my kids - Ronnie, Jessica and Corey. Life appears to be a day to day proposition for them. There is no thought to the future, no concept of having to work hard to have a future, and almost a denial that their future as an adult will come to be. So as much as I want to 'fix' things for kids who will be aging out of the systems that have provided their support for so many years, I am coming to realize that it can't be fixed without the committment of the kids themselves.

I've often referred to a lack of motivation at least when talking about my kids. Now I'm starting to think that it is more than just a lack a motivation, although that certainly does play a role. Have our support systems not done a good enough job of preparing our kids for a future? Have those support systems done too much over their young years to make sure their needs were met but without an eye to their lives as adults? What have those systems done to instill motivation, to encourage dreams for young people whose lives are often tumultuous beyond reason?

And it's more than providing job training and life skills...

We have to find a way to motivate, a way to encourage dreaming, an understanding of planning for the future. I don't know how to do that, but I hope that I, and indeed all the systems that support our kids - social services, schools, medical professionals, therapists, etc. - will also work on addressing this issue.

Support, Not Control

In 2009, my oldest daughter turned 18 and she and I needed to make some decisions regarding where the next phase of her life would lead. Jessica, who is significantly disabled, was living in a group home, still going to school, and still experiencing some issues related to her Reactive Attachment Disorder. Many of the support staff in her life were telling me that I needed to file for guardianship of Jessica so that I could continue to make decisions for her now that she was an adult. But that was very difficult for me.

Becoming Jessica's guardian meant I would have to stand up in court and say she was incompetent of making any decision. If the judge agreed that I should be her guardian, it would mean that Jessica would lose many important civil rights, rights that would be almost impossible to restore in the future.

I decided against guardianship, but again arrived at a similar decision point when both Ashley and Ronnie reached 18 years old. As in 2009, I renewed my research into guardianship and consulted with the attorney that had helped me previously. I have also decided not to seek guardianship for Ronnie and Ashley, but I feel like I should share my story of why I made that decision.

Below I have listed three posts from 2009 that chronicled my journey through the guardianship decision. I have also listed to other links, one from the ARC of the United States and one from the ACLU. Both these sources do a much better job of explaining the guardianship issue than I can.

I hope any parent facing this issue now will find some value in this information. But as I said in one of my posts on this subject, if you are considering any legal action involving your adult child with a disability, I urge you to contact an attorney or you state's protection and advocacy organization.

Someone to Watch Over Me

Someone To Watch Over Me - Followup #1

Someone To Watch Over Me - Followup #2"

Guardianship - ARC of the United States

Disability Is No Excuse To Deprive One of Civil Liberties - ACLU

Does Deaf = Broken?

I found this very thought provoking short film this week. It caused me to examine my thinking and views related to deafness, and I believe it will do the same for you. The only other thing I will say is that by the end of the film, I was very, very sad...

Shot in the style of a documentary, The End follows four fictional deaf children through their lives into an imagined future, as some decide to undergo treatment for deafness while others refuse it. But as the number of deaf people dwindles, what happens to the those who gradually find themselves without a culture?

Directed by Ted Evans, The End imagines the decline of deaf culture over the course of 60 years and how it impacts four individuals who have very different experiences accompanying the advent of a treatment that completely "cures" deafness. Rather than arguing for or against the preservation of deaf culture, The End asks what life might be like for the last generation of people to grow up deaf.

From Holland to Belgium

I've been living in Holland for almost 17 years now. You know, that place Emily Perl Kingsley described to us parents of children with special needs in her poem titled, Welcome to Holland. My family and I learned a lot from being in Holland - we learned to speak a new language (IEP, IFSP, ESY, etc.) - we learned a new way of living (enduring the stares, appreciating the smallest of gifts, etc.) - and we learned how to move around a foreign country with ease and grace. But since my son and daughter have reached adulthood, we are moving once again, away from Holland, that unplanned place that quickly became our home, to Belgium, the next leg of our family's journey.

The language in Belgium is different. Gone are IEPs, replaced by Plans of Care. The environment is different. Gone is the teacher, replaced by the case manager. The daily schedule of school, often a place of comfort and routine, will soon be gone, and our children must find other ways to occupy their days. Some may have a job, but not a job like you and I understand. Their employment life will be dotted with supported employment, sheltered workshops, and enclaves. If not working, they may spend their days in a day support program. The routine of getting up and going somewhere will be similar to the school years, but the expectations during the day will be completely different.

Some of our children may consider moving away from the family home. If so, there will be group homes to visit, 'staff' to meet, and lives to share with strangers. The lucky ones will be able to stay in their family home, hopefully forever, and not forced to move due to deaths or illnesses of their family. The Federal government will come into the picture as Social Security benefits are sought, and if secured, our children will have to learn to live with substandard incomes.

There will be new doctors to find, doctors who accept our children's Medicaid insurance. Friends, if our children had any, will change. Leisure activities will change. Learning to shop and manage money will be a skill some of our children will forever work to master.

And there will be the skills that must be worked on for years and years, skills not mastered in childhood. Along with those, will be the new skills that accompany every move to another country.

But like Holland, Belgium is not a horrible place:

• There are more castles per square kilometre in Belgium than in any other country.
• Cable TV penetration is the highest in Belgium at 97 percent of households.
• It produces 220,000 tons of chocolate per year, which is about 22kg of chocolate per Belgian.
• It was the place for the world's first recorded lottery, to raise money for the poor.
• Its highway system is the only man-made structure visible from the moon at night due to the quantity of lights.
• The saxophone was invented in the early 1840′s by Adolphe Sax (1814-1894) in the city of Dinanti, Belgium.
• There are actually 3 types of Belgian waffles including the common Liege waffles, rectangular Brussels waffles and thinner breakfast galettes.

But there is one very big thing that concerns me about Belgium - It legalised euthanasia in 2002 ...

I'm trying to accept that Belgium is going to be a nice place, a place to explore, and one that is very well-suited for the next adventure in my life and my children's life. What about you? Is Belgium a place you're dreading or looking forward to?

Special Exposure Wednesday

Pullups - wheelchair style...

Humor Does Help

All the school closings recently for cold weather, snow, and one day just for the threat of snow have been quite frustrating for parents who must stay home from work or search for alternate plans for their children. But I must say, if my school district followed the lead of this Kentucky school district, that frustration might be lessened!

Lifetime Learners

When Ashley was in the third grade, one of the special education staff told me I needed to be more realistic and accept that she had a lot of limitations. He said I set my sights too high when it came to what she was capable of doing. He was wrong, of course, and a judge told him so when I took his self righteous behind to court.

There are times when it seems our children with disabilities might not be making much progress. Sometimes it seems like they may be 'stuck' at a certain age, often not their chronological age. But I believe we are doing a huge disservice to our children if we accept they have reached the limits of their potential, regardless of their age.

Ashley will be 19 years old very soon. Just this week, I heard something that my heart has longed to hear for 17 years - she called me 'Ma'. She has always used the sign for Mother, and that is wonderful. But I just always wanted to hear it in her sweet voice. I wasn't sure I ever would, but this week I did.

Also, Ashley has always had some problems with eating. She has a g-tube, but she also takes most of her food by mouth. That's a result of some intensive therapy at the feeding clinic at our local children's hospital. Her food choices, though, are very limited. We see the same subset of foods rotated through every meal. But recently, she reached over and snagged my chocolate croissant - and ate it all!! A couple of weeks ago, she also took a spoon and indicated that she wanted to stick it in the jar of peanut butter. I helped her scoop some onto the spoon, and then she ate it all! I just stared at her in shock!

Our children are never stuck, never without potential. Even during the slower times, they are absorbing and processing, just like any person does. Never believe people when they tell you your child has reached their limit - never underestimate them - and never, ever let anyone else try to stifle your child's growth. Regardless of their age, I believe our children are always learning just as we learn throughout our lifetime. Let's celebrate their successes whenever and wherever they happen!