Friday, September 30, 2011

She said, she said; Time for he said

Daniel has PT, OT, and vision therapy at school. He was denied speech therapy years ago on the basis that his speech level is on par with his cognitive level. I fought it and took it downtown to the big shots, but he still only ended up with communication "services" rather than those offered by an SLP.

We had yet another evaluation by the speech therapist at his school last year that indicated he has the cognition of a rock. Her report said: "Unable to complete formal assessment. No communicative intent was observed. Point of origin may be to establish a reliable yes/no response, however,lack of awareness, intent, and motivation will make this very difficult."

Even though I knew that her report was dead wrong, and that her motivation was the consensus in Florida that any student classified as profoundly mentally handicapped is not eligible for speech/language services, it affected my motivation. I had been using YES NO cards with him, and instead of feeling inspired to prove her wrong, I lost enthusiasm. That was wrong on my part.

This week Daniel started speech and oral motor therapy in a private clinic. After only an hour with Daniel, this therapist had very concrete suggestions for decreasing the hands in the mouth habit he's acquired, and LOTS of great things to say about him.

She feels strongly that he's been underestimated. He responded to her requests appropriately, making the correct choices and identifying colors. He used head nodding for yes and no. She has high expectations for him, and says we're going to raise the bar to try and find out what's really inside of my boy.

I can't tell you how happy this makes me. Well, I can, but I don't know if you will get how excited I am by this validation. Depends on who you are. Parents of kids who are denied approriate services most likely fall into the "gets it" group.

The good news doesn't stop there, either. I got a letter from his new teacher telling me how well he's doing with the communication program she has going. In her words, "Daniel is a smart boy. Be as persistent as he is. Don't give up on him, he can do it. He may not always get the 'right' answer, but it's more important that he is actually going through the communication steps..."

Our private therapist says that Daniel has the mobility and the intelligence to do a lot more than he's doing. His new teacher agrees; now the work begins. I'm just thrilled to have people on our side for once regarding the speech/communication piece.

I think we may have turned a corner.

Thursday, September 22, 2011

Don't define my reality for me! Don't even try...

I am fighting feelings of frustration (I'm pissed) stemming from an interaction I had with someone who assumes that my life with Daniel is one of struggle and unhappiness.

My blog title is Daniel's Gift. Maybe gift should be plural, because he has more than one. He is one of the happiest people I know, or at least his smiles and belly laughs would indicate so. The guy wakes up smiling, for god's sake. He's funny. He has a sense of humor and cracks us up at times. He's just an all around cool dude. This doesn't mean that his disability is a gift per se, it means that we all have gifts to offer, disabled or not.

So, to clear my mind, I'm going to quote someone I have immense admiration for.

"It is worthwhile making a distinction between talents and gifts. More important than our talents are our gifts. We have only a few talents, but we have many gifts. Our gifts are the many ways in which we express our humanity. They are part of who we are: Friendship, kindness, patience, joy, peace, forgiveness, gentleness, love, hope, trust, and many others. These are the true gifts we have to offer to each other.

Somehow I have known this for a long time, especially through my personal experience of the enormous healing power of these gifts. But since my coming to live in a community with mentally handicapped people, I have rediscovered this simple truth. Few, if any, of those people have talents they can boast of. Few are able to make contributions to our society that allow them to earn money, compete on the open market, or win awards. But how splendid are their gifts! Bill, who suffered intensely as a result of shattered family relationships, has a gift for friendship that I have seldom experienced. Even when I grow impatient or distracted by other people, he remains always faithful and continues to support me in all I do. Linda, who has a speech handicap, has a unique gift for welcoming people. Many who have stayed in our community remember Linda as the one who made them feel at home. Adam, who is unable to speak, walk, or eat without help and who needs constant support, has the great gift of bringing peace to those who care for him and live with him. The longer I live in L'Arche, the more I recognize the true gifts that in us, seemingly non-handicapped people, often remain buried beneath our talents. The so-visible brokenness of our handicapped people has, in some mysterious way, allowed them to offer their gifts freely and without inhibition.

More surely than ever before, I know now that we are called to give our very lives to one another and that, in so doing, we become a true community of love."
~Henri Nouwen, Life of the Beloved: Spiritual Living in a Secular World

So there (I say, sticking my tongue out)!

Thursday, September 15, 2011

Genetics Visit

A few weeks ago we saw our geneticist, Dr. Perszyk. He spent a lot of time watching Daniel, sizing up his unique characteristics, and deciding what direction we should take in looking for a diagnosis.

Daniel hasn't had any testing done since 2002, and there are better methods out there nowadays. The glitch is that most companies that do the testing won't bill medicaid or many times even regular insurance. Doc assures me that we are VERY close to much cheaper, wide array testing and that we will have a definitive diagnosis one day.

In the meantime, he referred us to the Angelman Syndrome expert, Dr. Williams of the University of Florida, Gainesville. We'll see him on December 12. Based on the diagnostic criteria, Daniel qualifies for a clinical diagnosis even without the labs to back it up. He meets all of the features required, and most that aren't. Of course, the way chromosomes work, he could be affected by something extremely closely related to Angelman's that hasn't been discovered yet. Dr. Perszyk believes it's Angelman's, and that Dr. Williams will make the call.

Here's Mr. Happy himself, on an October day in 2007:

Here are some of the diagnostic criteria for Angelman's that Daniel meets:

Severe Developmental Delay
Ataxic Gait
Happy Demeanor
Easily excitable
Hand flapping
Microcephaly <2 SD
Abnormal EEG
Feeding problems
Mouthing behaviors
Sensitivity to heat
Fascination with water
Abnormal food behaviors

It helps to have a diagnosis because then we have an idea of what to expect in the future. It's also good to know which chromosome was affected and whether it's due to an imprinting defect or the absence of a gene. It's the scientific part of me that wants/needs to know.

Ultimately, he's my angel with or without a diagnosis, typical or atypical, because I'm his mom and he's my boy!

Thursday, September 8, 2011

Trying Times

Lately I feel like I'm on high alert mode all of the time. I had a talk with myself this morning just to remind me that I can't change the outcome of anything that's happening. I can do my best to cover all bases, but in the end I have no real control.

Daniel's teacher and nurse called me at work the other day to report that he had a staring seizure. I gave him extra Topamax and watched him, but everything seemed fine. Then the bus driver told his sister at drop off that he had a "small seizure" and she brought him out of it.

I'm doubtful that these are true seizures. Now, I know that the staring petit mal types can be very brief, but he seems to be responsive during these episodes. He tends to space out from time to time, but he always looks at me when I say his name. I don't want to overmedicate if it's not true seizure activity. Looks like it might be time for another EEG.

Rich has nine more radiation and two more chemotherapy treatments to go. He's not feeling especially optimistic about things, and that has me worried, too.

In the end, I can pray, I can take deep breaths, and make sure both guys get to their appointments and take their medications. I can be watchful and responsible for what I see and that's all.

As my father-in-law used to say, these are interesting times. Personally, I'm ready for a little boredom.

Saturday, September 3, 2011

For Chet

It's hard to believe that a week has already gone by since we got the call from hospice telling us that my father-in-law died in his sleep. My emails from him are changing from the "on Thursday, on Friday..." to "last week" status. He always signed his emails "Cheers". The jokes he sent me that morning are still in my inbox. My last message to him remains unanswered.

He was 84 and he knew it was coming. He wanted to know exactly when the day would arrive, but of course those are the kinds of things we can never pinpoint. So, instead he planned the best he could by making sure every detail of his death would be covered: Cremation, burial, even his obit was written by him ahead of time.

Chet loved to write. When we met in 2003 and he learned that a small, independent press published my book in 1994, he told me it inspired him to finish his own and get it printed. He called it 'Seize the Carp' in it's first incarnation, and later changed the title to 'Chet Chat' when he revised it.

The cover describes it as:

Anthology of reminiscences, free verse, letters, whimsy, vignettes, opinions, observations and other stuff.

"A good bathroom book, for several reasons."....Clyde Womsley
"Fabulous coffee table book; big enough to cover stains and scratches."...B. Little
"Great Christmas gift; better than fruitcake."....Karen Stone

He was a WWII veteran, and a retired insurance salesman. He took up downhill skiing at the age of 50. His wife Betsy, married to him for 64 years, keeps telling me, "He had a great life. He did everything he wanted to do." And he did, as far as I know.

Even though we knew he had terminal cancer, we were taken by surprise when we got the call last Friday evening. He was stable for weeks. There was no sudden decline and bedside vigil. He laid down for a nap and didn't wake up.

The suddenness was hard for my husband. After a day of radiation and chemo, he was utterly exhausted when he learned that his dad died. He stayed awake the entire night grieving. Yet, I believe that by leaving us quickly, Chet was making sure that there was no need for hospitals or long, drawn-out goodbyes. Even in death he was courteous.

He didn't want a funeral or a memorial, just a small family gathering. Since he will be buried in the National Cemetery, we'll all be together then. Hopefully Rich will have all of this radiation and chemo business behind him and be feeling stronger by then. He has two weeks to go and then a scan to see if all of the super-sonic proton beams have done their job. I know that Chet is using any pull he now has on the other side to help Rich get through this last bit so that he can begin to recover.

We will all miss you, Chet. I'm not going to say goodbye, though. It's until I see you again. Till then, Cheers!