A Boy and His Dog

Joseph,

Do you remember all the times you begged us for a dog?  You were relentless, as you usually are.  You wanted to work at the animal shelter just to work with dogs.  You told me of all the things you would do with your dog if you had one.  You were going to walk your dog, feed your dog, play with your dog, train your dog, sleep with your dog.  Do you remember?

By the grace of God, we got you the best dog in the world.  She is everything you ever wanted.  She is big.  She is smart.  She is loyal.  She is gentle.  She is trained.  She is amazing!  And of all the family members, you are the last to appreciate this. 

So do you remember last night?  Do you remember going to bed without telling us goodnight?  Going to bed early again due to your disrespect?  It has been the same thing for the last two nights.  But what made last night so sad is the way you came home from school.

You were so happy about your day at school.  At wrestling practice you had wrestled Z and won!  You were so proud!  You were full of stories, smiles, laughter.  After dinner, as always, everyone had chores and homework.  It was your easy night of chores.  I told you to make sure your room was clean, pick up trash on the stairs, and take the dog for a walk.

And the sweet, happy, smiling boy went away.  You got angry because you could not watch T.V. until you took the dog outside.  You thought it would be okay to just let her run around without a leash.  You did not care that she could get run over or picked up by the pound.  You just did not feel like finding the leash, putting it on her, and walking her outside for, at the most, 5 minutes.  You let her out anyway.  She ran.  You told someone else to go get her.  We told YOU to go get her.  Then you let your mouth start.  You said this was all stupid.  She was fine.  You said I was getting worked up and over reacting.  You got sent to bed.  And I sat here wondering why.  Why does that happy little boy always have to go away?  Why do our happy evenings always have to end on such an unhappy note?  Was it really that hard to walk the dog?

So today is Friday.  To say I'm dreading the next three days is an understatement.  What you don't know is how sick I've been lately.  How hard I am trying to make you happy.  How very much I love you!  Please try.  Put the effort out.  Love your siblings.  Love the life that God has blessed you with.  And love your dog!

Love,
Mom

Merry Christmas and Happy New Year from the Linscombs

 

Front L to R:  Mary Clare, Jerome, Bernadette, Joseph

Back L to R:  Amy, Mattie, Jeffrey, Justin

Changing Winds

I know it has been forever since I updated the blog.  There are various reasons for this.  I will explain these best I can and then I will tell you why I have decided to write again.  As I have stated before, writing is my therapy.  There are a few other hobbies I have but nothing soothes my soul and battered emotions like writing.

Joseph was attending Villa Maria school for special children the past few years.  He would go on a Sunday evening or Monday morning and stay until Friday evening.  We had to deal with some behavioral issues and frustrations on the weekends but it was not to the point where I had much to write or vent about on the blog.  I also turned to exercise for a long time and would set out every morning to a boot camp or bike ride which I found to be very therapeutic. 

Another reason I let it go was because I had nothing new to say.  It was the same old thing.  I needed to find other ways to deal with the stress then venting them to the world on this little blog.  And then things started to unravel quickly with every thing else in our lives BUT Joseph.

I had three weddings of adult children, two grand babies born, two knees replaced, we lost our home, moved into a rent house and just a month ago into a new home, physical therapy, doctors appointments, numerous health issues,  and problems of various degrees with all the other children.  It was mind numbing.  So mind numbing I didn't even have the strength to write.  So, what has changed?

After suffering a lot of health issues over the past three years, I have come to accept my life as it is.  I temporarily opened an antique shop but after too much success decided to open it from my home to ease the stress and to be here for my family.  Also, Joseph did not return to Villa Maria this year.  He wanted to stay home and go to the public school.  After exploring our options and finding out more about the program we decided it was worth giving it a chance.  This meant he would be home all the time which on one hand is a good thing but on the other leaves us with no respite.  Ever.

The house we bought is ideal for him.  It is 2 blocks down from the rent house so he knows the neighborhood and there was little transition to deal with.  He also has his own room which gives him his own quiet space to retreat when thing begin to overwhelm him.  I gave him the smallest room so he feels snug and safe.  He loves it!

And so...why now?  Why even start writing again?  Things are better with Joseph.  At least I know what to expect every day.  I know things will always be crazy, hectic and stressful.  What changed was that Joseph discovered this blog.  He was issued an ipad at school to better do his work.  I am still not sure how he came to discover the blog but he did.  And he read it.  And he thought it was AWESOME!  He asked me when I picked him up at school if he was famous.  He said he was on the Internet and so were pictures of him.  He was THE camouflage angel!  I told him that a lot of people around the world love him and pray for him so yeah...he is famous.  He came home with a different disposition.  He was moved by our love.  Understood our struggle.  Appreciated us! 

My idea is to change my forum.  I have decided to talk to Joseph through this blog.  It will get personal.  I will be harsh at times but always loving.  Why didn't I think of this before?  He reads better than he listens.  I thought that through this type of forum it would keep my family and friends updated while at the same time talking to the famous angel himself. 

So here goes.  I will start tonight and we will just take a day at a time.  And by the way, I hope everyone is having a very blessed New Year!  I've missed you all and hope that you continue to offer us up in prayer.

Unseen But Still There

I am not sure if I am alone in this or not but here goes a rant.  It is not that I don't understand the good intentions of others but I am defensive right now.  I would not say offended but just weary and defensive.  I am so tired of people meeting Joseph or just observing him and saying something along the lines of  "he looks so normal and is so sweet!"

I just want people to know a few things.  I am considering carrying around his massive file of reports and just say "here, would you like to read these?"  Am I looking for sympathy?  Probably.  I suppose this is not very honorable of me.  But I am human.  I am a mom.  I am a mom who deals with a special needs child and this is what  I want you to know.

Special needs of the mind, illnesses of the mind and injuries of the mind have a higher rate than those with physical conditions and often have few physical conditions.  Joseph would not be in special needs programs at school if he did not have learning disorders.  He would not be in a school for special needs children if he did not meet the criteria.  He would not have specialists in different fields saying the same things.  I happen to be a mother who did NOT want a negative diagnosis.  I went to different doctors and different types of doctors trying to get a different diagnosis.  I have sat in the chair opposite the specialists who have studied him to hear the words, "I'm sorry but this is a very complex situation".  NO!  I do NOT want to hear this.  I, too, "see" no physical handicaps.  This frustrates me more than comforts me.  There is something broken I can't see and can't fix. 

No one sees, lives, hears, and feels the violence that we do.  He slapped me on the back this weekend so hard it knocked the breath out of me and brought tears to my eyes.  And this was a playful moment.  He also pushed me into the counter this weekend saying he hated me.  I have holes in the wall in every room of my house.  Every door has a keyed lock on it...the hall closet, the wash room, bedrooms, storage room.  Anything that can be used as a weapon or could hurt him has to be locked up....knives, bats, jump ropes, tape, belts, sheets, tools, cleaners, alcohol, medications, etc.  However, there could never be enough protection as there are lamps, electrical cords, chairs, pillows, windows, sticks, rocks.  So he has to be watched 24/7 when he is home so that he does not hurt himself, someone else or our property.

He has set fires, urinated in floor vents and holes in the wall, run a mile down the road in the snow barefoot, run into traffic, ran out of a courthouse in a city, has night terrors when he does sleep which is seldom, vomits for no reason, has strange food likes and dislikes, can't stand his nails or hair to be cut, has to swim with a shirt on so no one sees him "naked" but will walk through the house with nothing on, sees and talks to things that are not there, suffers an anxiety disorder, gets motion sickness, migraine headaches, irrational thinking, memory loss and distortion, and so much more.  He does not feel severe pain but falls apart over the smallest pain.

One of his diagnosis is autism.  It is a social disorder.  He can not handle social situations.  He shuts down.  He will not look you in the eye.  Because of this, and his finger twisting and flicking, his loss of words, and his nervousness you may see him as shy.  He is but it is much more than that.  This shyness is seen as sweetness.  He is but.....  And what you may not know is that this "shyness" and inability to communicate well, with a speech impediment, with social problems, and with anxiety issues (he will be scared you will laugh at him or not like what he says) what he is going through as he talks to you is very painful for him.  So when we leave your company his stress kicks in and we are the ones he takes it out on.  Oh, and he is medicated so his symptoms are not as severe.

He has severe sensory issues so it is always a guess as to what is going on at every moment.  Is he too hot or cold?  Is it too loud or too quiet?  Is the room too large or too small?  Is this shirt the right material, color or size?  Are the lights too bright or is it too dark?  Is the wind blowing?  Is there a smell bothering him?  Is there someone in the room that scares him?  Is that chair too hard or too soft?  Oh, and he is medicated so these symptoms are also not as severe.

They say to find his triggers so as to avoid the meltdowns.  What do we do when everything is a trigger?  What's a meltdown you may ask?  It depends on the day and what set him off.  He may run.  He may scream.  He may cry.  He may hit.  He may throw something.  He may say something very offensive.  He may start drooling.  He may spit.  He may break something.  He may kick something.  He may fall on the floor and pitch an all out tantrum which is not easy to deal with when it is a 10 year old 93 pound boy.  Oh, and yes, this is ON medication.

I have heard some kind things from friends and family.  I know that this is just a venting rant today.  I know that I have prayers and support.  But there have been several people who have told me that it is "doctors" (said with almost a hatred) that have told us there is "something wrong".  Why did we want him "labeled"?  And "what do doctors know?  They are crazy?"  Maybe it is just his diet?"  "Maybe he will outgrow it?"  Or "I don't know.....I have children that misbehave...."  My all time favorite was "There is nothing wrong with Joseph.  He just needs LOVE!" 

So please, if you hear that someone has a child with autism, bi-polar, schizophrenia, brain injury, or other mental illness keep these things in mind.  When you see a child "misbehaving" in a public place give the parents the benefit of doubt and think that maybe they have a disabled child.  Their handicap may be unseen but it is still there.

Miracles DO Happen

I am often lost in the everyday expectations of my vocation without realizing that I have become indifferent to the crosses I have been asked to carry.  I wake each morning knowing what is expected and what to expect.  And then, out of no where, God jars me with something different.  It is Lent.  I fully expected this past weekend would be hard and maybe even harder than the weekends before.  But He gave me a gift instead.

Things had gotten so hard over the past few weekends when Joseph was home that we had decided I would find a place to stay with him.  Perhaps someone had a basement room I could use or a camper?  I am still looking if anyone has any ideas.  But this past weekend things were different.  When I picked him up Friday at school I could tell right away that he was at peace.  He was smiling.  He was happy.  He told me wonderful stories full of faith and hope.  He shared with me that he had given up Transformers for Lent so he would not be talking about it over the weekend.  He went happily and without a fight to his therapist.  There were a few issues.  He had problems sleeping all weekend and I was up with him all night Saturday.  But we had such a beautiful wonderful weekend.  He was my old Joseph.  The Joseph we knew before his brain injury.

I see my little Jo-Jo sometimes but it is a fleeting moment.  And then his anger returns.  I hope and pray that this is a real miracle.  He is going to daily mass and loves saying his prayers and singing to Jesus.  He is around such kind and pious Sisters.  He is blossoming.  I took him to get an ice cream before bringing him back to school Sunday night.  He told me how much he loved me and that he was so happy this weekend.  He said he was worried about going back to school because he was going to miss me so much.  He said he had a good idea....how 'bout we take a picture every time we do something special together so we could remember it forever.  So...I did!

Last week he had a day off school and I took him up to his old school to visit his friends.  They were so sweet to him.  They asked him so many questions.  He told them about being in the special Olympics.  Here he is telling them all about being on the basketball team!

Showing them how he dribbles the ball!

Joseph is on a prayer list for the canonization of Frank Duff, the founder of The Legion of Mary.  This may not be enough to be declared a miracle for a canonization but if he stays on this path it will be a huge miracle to my family.  Please consider saying this prayer with our family. 

God our Father, You inspired your servant Frank Duff with a profound insight into the mystery of your Church, the Body of Christ, and of the place of Mary the Mother of Jesus in this mystery. In his immense desire to share this insight with others and in filial dependence on Mary he formed her Legion to be a sign of her maternal love for the world and a means of enlisting all her children in the Church's evangelizing work. We thank you, Father, for the graces conferred on him and for the benefits accruing to the Church from his courageous and shining faith. With confidence we beg you that through his intercession you grant the petition we lay before you ..... We ask too that if it be in accordance with your will, the holiness of his life may be acknowledged by the Church for the glory of Your Name, through Christ Our Lord. Amen.

Moments Like This

Sleeping peacefully on the couch as if in prayer.

Moments like we had this past weekend are God's little reminders to me of how blessed I am to have this incredible child in my life.  In His mercy, God opens these windows of time where, for a moment, I am able to look into Joseph's heart and soul and really see him.  I see the little boy that is happy and yet profoundly sad.  The little boy who is at peace and yet terribly afraid.  The little boy who is full of joy and yet so angry.  For a moment he looks me in the eye and we really connect....and then it's gone.  I honestly do not recall the last time I enjoyed a whole weekend with Joseph and the rest of my family.  Joseph did not give me one moment but several of them where his camouflage was gone and I really saw an innocent sweet angel.  We laughed and we played.  He was so at peace.  He would go to his bed on his own and fall asleep.  He was concerned about the rest of us.  He reminded everyone of rules.  He taught us how things were done at Villa Marie and voiced his opinion that it would be better if it was done that way at home.  His infectious smile was back!  The dark circles under his eyes were gone.  I can only think that his new medication and his time at Villa Marie are to credit for this amazing transformation.  I knew that daily mass, the sisters, and sleeping just steps from Our Lord would make some difference in his life.  Will it last?  You know, I am past asking that question.  I just soak in every single moment like this and treasure it.  It gives me the energy and strength I need to face the next battle.  He called me last night.  He was missing me.  He said he loves me.  I heard it and felt he meant it.  I dreamed about him all night.  I can't wait to see him again.  No one but the mother of a child like Joseph can understand how bittersweet that is to say. 

His reaction to my question, "What do you think about all this snow?!?!"

Family fun at the lake!  That's Joseph flying down the hill!

School, Snow and Seroquel

Fundraiser dance for Villa Marie

Joseph's second week of school went much better than the first.  He stayed all week!  I didn't even get a phone call from him.  We met him that Friday night at the dance hall where the school was having a fundraiser.  He was dancing with his fellow students having a great time.  All he did was wave to us!  He was so happy and did not want to leave. 

The weekend, however, was horrific!  He really needed to be brought to the hospital several times but we held off hoping things would settle down.  He did not have school Monday which meant a long and hard 3 day weekend.  We decided that if the new medication (actually an old one we have gone back to taking) did not kick in and things didn't get better I would find a place to stay on the weekends and keep him away from everyone.  Those plans are still there on the back burner.

The new/old medication, Seroquel, is working.  He is not hallucinating any longer.  Which means that he is mentally ill.  The medication is for treating schizophrenia.  He has not been diagnosed with this but instead bi-polar, however, it is very common for children to have their diagnoses change as they age.  The bottom line is that the medication is working.

The third week of school went great!  I picked him up this past Friday and again, he was not happy about coming home.  We have worked hard all week trying to make changes that he would not notice but would make a difference.  We locked up all his Transformer toys and decided he would get one back per hour that he was well behaved pending his request for them.  So far, he has not asked.  We locked up all electronics.  We have gentle quiet music playing.  The lights are very low, if on at all.  And we are not reacting to his behaviors.  So far, so good.  And THIS IS A MIRACLE as we are snowed in for the weekend!!!!

Joseph, far right in red

He has been out but doesn't like it much.  He comes in and sits downstairs singing at the top of his lungs the church music he has learned at school.  "Never too young to preach the gospel, never too young to bring Good News....".  I think him being at school during the week has given our whole family a chance to heal during the week and to be strong enough to deal with him on the weekend.  God has given us a new understanding and love for him.  The opportunity to practice patience and true charity are always present.

Blessed are you who take the time to listen to difficult speech,
If I persevere, I can be understood.

Blessed are you who never bid me to "hurry up"
Or take my tasks from me and do them for me.
For I often need time, rather than help.

Blessed are you who stand beside me as I enter new and untried ventures, Myself and You.

Blessed are you who ask for my help.
For my greatest need is to be needed.

Blessed are you who, with a smile encourage me to try once more.

Blessed are you who never remind me
That today I ask the same question twice.

Blessed are you who respect me and love me just as I am.

Author Unknown