Some Amazing Friends

Good afternoon!

When having a special needs family you quickly find out who your real friends are.  They are the people that love you and your family regardless of what concessions have to be made to make things comfortable.  They are the kind of people who will be happy to eat takeout food every time they visit, or cook, rather than going to restaurants where it may be difficult (Yingers I'm talking about you! xoxo).

Last weekend we had the honor of hosting a few of our most special friends for a relaxing and informal summer dinner.  The Miller family has been a second family to me for about 35 years.  I love all of them like brothers and parents.  They are all warm, wonderful, and good people that define to me what friendship and love is all about.  To say that we are thankful and blessed to have them in our lives is a gross understatement.

The other guest is a man named Tom Newnam.  We met Tom last fall at Leg Up Farms which is a facility which provides services for special needs families.  He was volunteering his time to help tend the pond.  Tom and I became friends for life from the moment we met. We spoke the same language about leading life with your heart.  The more I learn about Tom the more I admire him.  He is not any ONE thing, but MANY things.  He is a volunteer, a painter, a writer, and so much more.  When I am inspired by a photo or something I write, I immediately share it with him because he sees exactly what I see.

That day we met Tom my daughter caught his eye and he asked if he could paint a picture of her.  The result was stunning.  And with the help of Mom and Dad Miller we were given this incredible gift to keep in our family.

Tom often uses Leg Up Farms and special needs children in his paintings.  He sees the beauty in the pure heartfelt things going on there and has the gift of translating it to canvass.

If you have the opportunity, please look up Tom Newnam (note the spelling) and read his book "Memo From Your Soul", or look him up on Youtube, or Google him to see more information about his paintings.  He tells incredible stories through his words and his paintings.

Be Well and God Bless.  Tom

Poem to my Son

To Tyler

It's so amazing to watch you grow
Into this man we've come to know
Stronger than we thought could be
An example of great possibility

No longer the child who could not walk
Or the little boy that could not talk
Not the boy that had to hold my hand
Or need my arm to help him stand

What I see in you is so much more
Than all of us had seen before
A strength you found deep within
All the while you keep your grin

There is a sadness to letting go
Heartache we try not to show
But we know this road is what you need
Our wish for you to succeed

Though you don't see us every day
We have your back in every way
And if you feel we are apart
You will find us right within your heart

-we love you and couldn't be more proud.   Mom and Dad

Empathy in Today's World

Good afternoon!

This was a much better week for Tyler.  His belly issues cleared up and he was feeling much better by  the middle of the week.  The consensus is that Tyler has returned to his "old smiling self" which is music to my ears.

I try not to get preachy with my posts but I do have a particular subject in mind.  It seems the longer I am on this earth the less empathy that I see.  That is to say people are considering the feelings of others less and less.  It is almost as they we creating a culture where putting yourself in someone else's shoes is labeled as "political correctness" and then shunned.

Many people think nothing of parking in a handicap parking spot because they are just running in for a minute.  We turn our heads to the real atrocities in this world like hunger, war, child trafficking, and missing persons to more fashionable and trivial topics.  Perhaps it's our way of protecting ourselves from the really painful truths that play out in front of us.

We pay athletes 100s of millions of dollars to catch a ball and yet we continue to cut special needs funding on a regular basis.  We despritely need more research and funding to stop cancer, Alzheimer's, ALS, Autism, etc. because so many of our friends and family members are suffering and need better care.  But sadly we have created a system which makes billions of dollars on the treatments and not the cures.  Too many people are making too much money keeping people sick.

We have to wake up and stop thinking only of ourselves.  I believe we will be judged by how we treated the least fortunate among us.  Do we take care of our sick children?  Do we fight for those with disabilities and try to make their lives better?  When we get a leg up do we turn around and reach down to help pull the next person up?  Do we empathize with our neighbor and try to make their lives better regardless of their religion, color, and beliefs?  Or do we stand in judgment of them with a our noses up?

Perhaps this is one reason I love Tyler so much.  Materialism means nothing to him.  Nor does color, a persons beliefs, who they love, or anything else like that.  He loves those who love him and respects those who respects him.  I think that makes him far superior to most of us.

Be well and God bless.  Tom

Updates Good and Not-So-Good

Good evening!

One thing a special needs caregiver, or any caregiver knows is that some bitter can always accompany the sweet.  For me getting great news on one hand means I look behind me to see if the other hand is coming to smack me in the head.  Some might consider that paranoid but I've got plenty of scars to remind me that it's just a reality.

I received an amazing update about Tyler this weekend.  His house staff is more pleased with each passing week with his progress.  Specifically, he had an appointment this week to get a test which required blood draw.  At home that meant he would have to be put under so nobody would get hurt.  There was no way I would try having it done with him awake.  Part of that, I admit, was my growing inability to see him being held down to do a test.  In 23 years I held him down "for his own good" more times than I cared to count.  Every time we would compete the test I felt like I had done him wrong somehow.  I knew the test had to be done but all he knew was someone was inflicting pain and I was participating in it.  I couldn't make that distinction anymore and emotionally I couldn't be part of hurting him ever again.  But the test went better than expected this time.  Yes, he had a few security guards help hold him still, but the test got done and he had very little anger about it.

Tyler also visited the dentist this week.  The staffers said he was really cooperative and allowed them to get X-rays and do a full cleaning.  His dental health is quite good!

Right after this wonderful update Tyler began to have some of his usual belly bloat symptoms.  Every 3 to 4 months he experiences gas buildup that causes him to get bloated and not want to eat until it can pass through.  We have never known why this happens, and all treatments thus far seem ineffective.  At last check he is getting a bit better again so hopefully he is on the mend.  His physician is wanting him to take gas reducing medication to see if that helps.

I look at all of this as part of a long learning curve.  The positive news is awesome and I am thankful for it.  But even the not-so-good things are serving a purpose.  Tyler is learning to allow his staffers to care for him through the bad days too.  And the staffers are learning how to be there for him when he needs their help.  Everything, good and bad, is a building block for his future.

As a caregiver we need to try and create a building block from every positive and negative experience.  Negative experiences are opportunities to improve the overall condition of things.  Don't allow frustration or hopelessness to blind you to the lessons you could learn.  Keep your eyes and ears open and evaluate what the experience means.

Be well and God Bless.  Tom

Tyler Update July

Happy 4th!

This is a great weekend to enjoy lots of time with our friends and family.  We were excited to have a visit with Tyler scheduled at the park on Saturday.

We arrived at the park to see him sitting with his housemate and their staffer.  As I approached him he stood up to meet me and gave me a nice hug and kiss.  It is always encouraging to see him looking relaxed and smiling when we meet up with him.

Within a couple minutes he wanted to take a walk with me through the park.  All of his usual silly sounds and movements came right back to him and we were carrying on as though we had never missed a beat.  He doesn't seem at all upset, confused, or uncertain as we walk the path we had walked hundreds of times before.  He just seemed happy to be walking in the sunshine with his dad.  For him its like sliding on an old pair of comfortable slippers.

Of course I enjoyed his company too.  Even better I love knowing that he is happy in his life.  For me, the walk was not so much like an old pair of comfortable slippers, but rather an old pair of sneakers.  What I mean is, even though they were tremendously comfortable for a long time, and still are, they feel a little less familiar now.  But after a couple of minutes they start to feel familiar again.  

We took a nice long walk and stopped a few times to snap some pictures.  His smile and laugh were relaxed and genuine.  Only a happy Tyler would be that way.

Once we returned from doing a nice big loop around the park, we returned to the bench so he could spend some time bonding with mommy again.  As with our walk, Tyler was the Tyler we have always known.  He was happy to get some pictures taken and feel our presence for a few more minutes.

After about a total of 30 - 45 minutes Tyler was ready to go back home.  This is certainly not a surprise as he doesn't prefer to stay in one place for very long.  We were not in the least bit upset because right now we want to do whatever makes him feel comfortable.  Seeing him healthy, seeing him smile, hearing him laugh and chatter makes us feel good. Giving him the love and support that he needs to grow as an individual is the best thing we can give to him, so if that means our visits will be shorter than we would like, that will be ok for now.

The reports from all agencies and everyone working with him is that he continues to enjoy his environment and they continue to enjoy being with him.  His family continues to be here for him and love him with all of our hearts.

Be well and God Bless.   Tom

Feedback Please

Good Evening,

It is hard to imagine but it has been 6 months since we first started this little blog.  So far we are nearing 3500 page views which is about 3499 than I might have imagined we would get....LOL.

I am always excited to see how many other countries are checking in!  There have been views from so many places.  The blog seems especially popular in France, Canada, and Brazil.  I'd like to welcome all of our international friends.  This blog opens its arms to all nationalities, religions, colors, and beliefs.  


I'd like to know what this blog means to you.  If you could please comment and just let me know how you feel about what you see and read here, it would help me as the blog's author.

Thanks to everyone who visits.  Tyler and I love to see all of you here!!

Tom

Nothing Compares to You

Good Afternoon!

Back in the 80's there was a song called "Nothing Compares 2 U" by Sinead O'Connor.  But this post has absolutely nothing to do that!

What I do want to discuss is how important it is NOT to compare yourself with other families. 

I have completely been there.  I've looked at other families and wanted to slap them just for being able to be "normal".  I wanted to know what it felt like to be able to do something without planning every single detail.  In fact I wanted to know what it would be like to do a lot of things.  As I am all in favor of owning your feelings I'm not suggesting that this is somehow wrong, but rather that there are other things to consider when you do feel this way:

1. That "normal" family has problems too.  When you talk to other families you hear how many are touched by special needs, cancers, Alzheimer's, and so many other challenges. There is a saying that if everyone threw their troubles into the center of the room most people would take theirs back again.  We never know until we walk a mile in someone else's shoes.

2.  You have to stick with what you do well.  There were certain places and things that we knew we could manage reasonably well.  Or there were slight modifications that we could make to increase our success with certain things.  We stuck to these strategies to make our experiences feel more typical.

3.  The truth is the truth....you have a different situation.  Trying to force your family to be more normal is a waste of time and energy that will lead to more frustration and futility. 

4.  You have limitations but you CAN do things!  There are so many places that can accommodate special needs families.  For some families the beach provides a great escape, for some it might be a mountain cabin, or using an RV.  Find what you can do and expand upon it.

5.  Don't become obsessed with what you CAN'T do.  I was somewhat guilty of this and it started to affect me negatively.  You can become discouraged which will make you want to do even less than you were doing before.  Just understand the line between processing these feelings and obsessing over them.

We have all been created as very unique creatures.  It is the things that make us different that make us so special.  Embrace that you are special and resist the urge to compare yourself with someone else.  After all, they may be looking at you and thinking the same thing.

Be well and God Bless.  Tom