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

First Week

His first week of school at Villa Marie was a week of learning, change, growth and acceptance.  Monday he seemed excited but wanted me to stay until after mass.  He was full of so much anxiety and paranoia about everything.  He was worried his luggage was too big, worried he had too many clothes, worried that we were late....it was a chore just assuring him that we needed to go inside and all would be fine.  When it was class time I could see his fear but the children were so kind.  They surrounded him and made him feel so much better.  I called at the end of the school day and the sisters said he did great.  However, at 7 o'clock they called and said he wanted to talk to me because he was missing me.  I talked him into staying but he sounded scared.  I told sister to give him his medicine and lets see what happened.  They called me back at 8 saying he was on the verge of crying.  He got on the phone and then he DID cry and wanted to come home . So off I went on a 45 minute drive one way only to get there and he was sound asleep!  I had to really work to get him awake.  He came home and went straight to bed. 

Tuesday morning he talked non-stop about how awesome it was there.  He said he really liked it but missed us which, of course, we understood.  I told him that if he stayed Tuesday night I would go get him Wednesday night to come home.  He agreed.  I called sister that night and they said he did wonderful and had gone off to bed with everyone.  I talked to her the next morning and she said he slept all night and did great.

Wednesday he said he did want to come home.  Once he got here, however, he said he liked it at school better than here because here was too loud.  This was a good sign!  He stayed at school Thursday night and when he came home Friday he seemed to not want to leave.  When I finally bribed him with a cheeseburger to get into the car because he had an appointment with his therapist, he did so reluctantly.  I noticed right away that he seemed to have fallen even further into some kind of mental stress and anxiety.  His therapist noticed it too.  He started telling her that his pencils were talking to him at THIS school too but he wasn't talking back to them.  He said they were aggravating him. 

The weekend was long, hard, and frightening.  So many bizarre behaviors.  Sunday night/Monday morning he woke me at 2 a.m. talking to his Transformers.  When I went to check on him he was walking through the house looking for a dictionary.  I asked why and he said so that he can learn big words because Optimus Prime uses big words and he doesn't understand them all. 

Monday he was anxious to get back to Villa Marie.  I dropped him off and headed straight to the doctor's office.  Long story short, they put him back on the Seroquel which is used for treating schizophrenia.  We are all praying that this helps him.  He is living in a strange and scary world that none of us understand.  My heart continues to cry for him.  My poor little boy. 

A Beautiful Mind

That is what I was told I needed to remember in order to understand what Joseph is seeing.  In the movie, A Beautiful Mind, he was able to function without anyone knowing he was seeing things because he knew they were not real so he was able to hide it.  So we have to teach Joseph that what he is seeing is not real and he has to ignore it. 

Joseph started talking to things that were not there....at least they were not there to the rest of us.  We were first told of him having hallucinations over a year ago when he had a neuro-psych evaluation.  He was describing talking to a friend named Michael.  I pushed it out of my mind and thought it was just a normal imaginary friend.  Then I found out another autistic boy in his class had a "pretend" friend and figured we were just dealing with him not being able to tell the difference between his imagination and reality.

But in the beginning of December he started acting bizarre.  He was doing things we have never seen before.  He was making strange noises in the middle of class, was very withdrawn, would just start talking to something/someone not there, and then....got lost.  He went to the restroom at school and when he came out he says he "saw Optimus Prime (a transformer robot).  So I followed him.  After I followed him for awhile he turned and told me to go back to class now.  Then I did not know where I was and was lost."  He also started having conversations with his pencils.  It was obvious to the teachers that he was not only talking to them but they were talking to him.  So, I immediately made appointments with some of his neuro doctors. 

My biggest fear is hearing that it is not physical.  I know this sounds disturbing but no one can understand unless you have been in these shoes.  I want them to find a tumor.  That would explain things.  That is something I can see on an MRI.  That is something that we can fix.  And, once again, my biggest fears are before me.  He is having hallucinations . Very real hallucinations.  There were things we found out he had not shared with us.  He is seeing mummies outside and they chase him.  They turn into eagles so that they can get to him faster.  He sees monsters.  He sees robots.  They tell him things.  His pencils have names and mouths....and actually talk to him in class and bother them . He gets mad at them because they won't stop talking.

He will be put on anti-psychotic medications ASAP.  Both doctors agreed that him going to Villa Marie is the best thing for him.  Right now we must work hard on stopping his obsessions.  He is obsessed with Transformers.  I have no idea how to break this.  But his obsessions and imaginations influence his hallucinations.

The mind.  What a beautiful wonderfully complex mechanism!  We could study it a million years and still it will keep some of it's secrets!  Thank you for your continued prayers for my family!!!

Ville Mary ~ A New Chapter

Yesterday Joseph went and spent the day at Ville Mary, a small private school run by the Catholic Church in Lincoln.  It was a trial day to see if he liked it and if the sisters thought he would do well going to school there.  Most of the children I saw have autism although they do take some with Down Syndrome and other needs.  However, they will not accept anyone who is not self reliant and needs a one-on-one para.  Everything on paper, medically, physically, and with his diagnosis looked good but they needed to see how a day would go with him.  Joseph would be the youngest enrolled at the moment with 2 other boys being 11 years old.

When I went to pick him up he was out in front playing ball with all the children.    He was smiling and seemed to have many friends already.  I watched from a distance at first and then got out of the car just to see what his reaction to seeing me would be.  He did not wave, did not walk over, did not even stare hard....he just kept playing and smiling.

The sister who is in charge took me inside and showed me Joseph's work and filled me in on his day.  They loved him!  She said that as the day went on he continued to open and shine.  She said the staff had already met and all agreed that Joseph would be a great fit and they would love to have him!!!!  She gave me the paperwork and I just went into a moment of panic, joy, sorrow, and thanksgiving all at once.  And then Joseph came in and said, "Mom, when are you leaving?  What are you here for?"  I said, "I'm here to pick you up!"  He was upset and said he thought he was staying and that he did not want to leave.  That did it for me!

I signed the papers and he starts January 16th!  He still did not want to leave!  He made friends with a boy named Charlie.  He has talked about him since yesterday afternoon and is drawing pictures for him at the moment.  Joseph will board at the school Monday through Friday and come home on the weekends.  He will be home for holidays and follow the Catholic school calendar so I will have all the children at home at the same time. 

What a blessed day!  Yesterday was my birthday.  It was also the feast day of St. Elizabeth Ann Seton.  She established the first Catholic school in our country.   She is the patron saint of Catholic Schools.  She is a convert from the Episcopal faith, as am I.   Could I ask for a more appropriate patron saint???? 

The next week will be hard as we have to leave a very important and special chapter of our lives.  His special teachers at Raymond Central are the reason he has made it this far in his education and social skills.  Joseph loves superficially but to the best of his ability he really loves these teachers.  I, honestly, do not know where I would be without them.  I think this will be harder for me than for Joseph.  Crystal, you will always be my friend sent to me by God during my darkest hours.  You will never be forgotten. 

Today we go see two of his doctors as we are having some serious concerns.  He is seeing and talking to things that are not there and appears to seriously be having seizures.  So as we celebrate the joy of Ville Marie we have to face the possibility that this next chapter has more hidden surprises for us. 

St. Elizabeth Ann Seton, please continue your prayers for our transition to Ville Marie.  Mother of Mercy, thank you for bringing Joseph into your home (Ville Marie means house of Mary).  And thank you, Jesus, for sending Joseph into my life.  I have learned more from him than any other soul.  He has taught me the true meaning of seeing You in ALL Your creatures!  Please continue to help me as his mom to follow Your will in all things!  ~Amen!

11 Things I’ve Learned Since Becoming a Special-Needs Parent

1. Not knowing is a lot harder than knowing. Yes, there is a lot we can do via therapy to help our children walk, talk, learn, etc. But the hardest thing to admit is that most of it is simply up to their brain and its wiring. There are no certain predictors that a special needs child will develop speech, be able to read, be potty-trained, or become self-sufficient . Good signs, yes. But nothing is certain. The not knowing can drive you crazy if you let it.

2. The internet is a blessing and a curse. On one hand, there is valuable information out there. Yet, information overload can get you stuck. You end up reading too many awful things — that often don’t apply to your child at all — and it can deplete your hope and make you paranoid.

3. Connecting to the special-needs community (whether it be acquaintances, support groups, or the internet) can be both a lifesaver and bummer. It is vital to find people who know what you are going through. Yet, sometimes it can produce even more negative feelings. Since there is always someone who has it worse than you, it can make you feel guilty for complaining. And, since there is always someone else who has it much better, you can sometimes forget that, when it comes to parenting, stress and worry are relative. Those people are just as immersed in their concern over their children as you are and, understandably, aren’t grateful simply because it could be worse. It can always be worse.

4. Holidays and special events magnify the situation. Birthday parties are no longer joyful events. Your special needs child is in an unfamiliar setting, one with all kinds of new dangers. You actually have to observe typical children alongside your child, so his delays and social difficulties are painfully obvious. People naturally want to know what to buy your child. And you might not know. He might not play with toys. And you will have to endure the present opening and cake cutting that your child is tuning out in front of everyone present. No matter what is said and done, there is an air of sadness. Ditto for Christmas.

5. Well-intentioned people will silence you and add to your frustration. They don’t mean to, but it is human nature to comfort and soothe. Invariably, they will attempt to do so in awful ways. Some will deny there is a problem and say that everything will be just fine. By denying there is even a problem, they effectively silence you and leave you isolated in your own mind. Some will try to remind you how grateful you should feel. And, while gratitude is a great thing, being reminded that you aren’t just makes you feel worse.

6. Picking your battles will take on a whole new meaning. A lot of folks will look at you like you are crazy for “giving in” to a 24/7 diet consisting of nothing but chicken nuggets and crackers. Even more will judge you for “giving in” to what they view as tantrums and being spoiled. You, however, know that therapy, joint attention activities, and getting to school are the real nonnegotiables.

7. People will surprise you. Causal acquaintances will step up to be better friends than the friends you most believed you could count on. There is nothing like becoming a special needs parent to give one clarity.

8. Doctors and other experts really don’t know everything. Your pediatrician and other persons doing behavioral screening may not see what you are so worried about and may try to convince you nothing is wrong. They may encourage you to wait and see. You will want to believe them and may forget that childhood development really isn’t their speciality.

9. If you aren’t a naturally assertive person, you will have to become one. People ranging from loved ones to Early Steps to the school system will give you a lot of reasons why they can’t meet your child’s needs. Even if it goes against your nature, you will have to fight for him. You will have to insist — which is both harder and easier than you might expect.

10. It’s easy to neglect others when you are caught up with the needs of one child. You can forget the importance of date night with your spouse. You might forget a friend or loved one’s birthday. You might realize that your typically developing children aren’t getting enough attention from you. And you might realize you are not taking care of yourself and are about to fall apart. You will have to figure out a way to stay both connected and together. This is hardest thing to learn and do of all.

11. You will develop an appreciation for the little things. There are moments of interaction and progress that will steal your breath. Hugs and kisses are unbelievably precious. And you will understand why this little soul was given to you. It’s because you are a perfect match for one another. And that is what sustains you through everything else.

http://flappinessis.com/2011/12/20/11-things-ive-learned-since-becoming-a-special-needs-parent/