Love is patient, love is kind

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.   1 Corinthians 13:4-7

  Do unto others as you would have them do to you. Luke 6:31 

There are several Bible verses that, as a Catholic, I use as inspiration for how I live; above are two of them.  I also utilize these verses when I look at the behavior/actions of others and in the instruction of my children and others that are entrusted to me.  For several days I have wanted to write this blog posting but instead of writing out of anger I took the time to pray and reflect.  Now I am ready to write a posting that will hopefully be constructive and upbuilding.

This past weekend was our Church festival - Mahrajan -- and on two previous occasions I posted about how much I was looking forward to Nathaniel's participation in it.  I presented this experience as a positive experience in his interaction with the Church and up until Friday night I was looking forward to posting a great follow-up to my earlier postings; unfortunately, the events that began to unfold Friday changed the dynamics of this posting.

  Then they brought young children to Him, that He might touch them; but the disciples rebuked those who brought them.  But when Jesus saw it, He was greatly displeased and said to them, "Let the little children come to Me, and do not forbid them; for of such is the kingdom of God.  "Assuredly, I say to you, whoever does not receive the kingdom of God as a little child will by no means enter it."And He took them up in His arms, put His hands on them, and blessed them.                  Mark 10:13-16

Nathaniel is 14 years old and in today's culture he is far from considered a little child but one of the things I find most endearing about Nathaniel, and many other children with developmental disabilities, that I have had the pleasure of knowing or working with, is their child-like innocence that they seem to never loose.  Nathaniel approaches everything as a "little child," I feel that is why he glows and is so much at ease at Disney World -- it is the one place he knows where everyone comes as a child and he is secure in being a child when he is there.

What makes up the qualities of little children that I believe Jesus was calling us all too.  They are trusting.  They are not perfect. Love comes naturally for them.  Little children are not afraid to show affection.  Their inhibitions are limited and they lean on people they trust (parents and other caregivers) for support, direction and encouragement.  God desires us to come to him as little children and it is sad that are society considers the above mentioned characteristics as being deficits in ones personalities not positive attributes.

Friday night Nathaniel and Rebecca went to church for a dress rehearsal.  They rehearsed from 7pm till about 9:45pm ( a huge sacrifice for Nathaniel because he is not a "night owl").  I stayed, this time, to make sure I got all the necessary information and because I did not know how long it would take.  As I stood and watched the rehearsal, I must admit, I  was filled with excitement for Nathaniel.  Wow! Nathaniel is doing it was my thought as I watched him from 7pm until about 8:30pm.

Could he do it perfectly?  No - far from it.   Was he in sync? No, he was not.  Could you tell he was different? Of course you could.  But, does that matter?   If the Church is the holder of Truth and God is both Truth and Love then as the passage above from 1st Corinthians teaches us -- IT SHOULD NOT MATTER!!!

To advisers of the MYO (Maronite Youth Organization) it did matter.  Because, after about 5 weeks of practices, sometimes 3 times in a week, and sessions practicing with his sister at home Nathaniel was now not going to dance. About 24 hours from their first performance he was being told he was NOT going to dance.  People's pride, self-seeking behavior and need to boast got in the way of the feelings of a "little child" that was to be devastated.

The decision had been made a week earlier that Nathaniel was going to hold a flag for the 2nd song but he was going to dance the first (a decision I  agreed with  because two was too much). He was always dancing the first song.  And I saw him do it.

What did I see when I watched?  I saw a child that worked hard.  I saw a child that despite all his limitations put his all into doing the best he could.  And anyone that knew the Nathaniel (a large number of the attendees since most come from our Church) would, I hope seen the same.  Yes, he was slower and out of sync but he was doing HIS best.  He was doing more than I ever thought he could do and then for the second song he went and held his flag with pride.

I can only guess what happened.  They saw Nathaniel "stick out."  They saw THEIR dance not looking as good as it could.  They did not want to present a product that was not professional.  What they did not see was a group of 11 children that gave of their time and talents to do something special for THEIR church.  They did not see a boy with special needs, who 5 weeks ago could not hop -- and now could.  They did not see this same boy excited and eager to do something for his church and crushed and angry when told he could not dance (they did not see that inpart because I took him aside and let him vent his anger to me).

Saturday and Sunday was not much better.  We went into the weekend knowing that he would be only holding the flag; something  he did for all 4 performances with a smile on his face even though he was angry and hurt.  He was also suppose to work with the other MYO members Saturday and Sunday in the games area.

On Saturday I assisted with finding him a job.  He worked with MiMi, one of the adults, and she was wonderful with Nathaniel. (Thank You!! )  He assisted in selling the games tickets.  This seemed to go well until MiMi was replaced with one of the MYO advisers.  Once he came Nathaniel was no longer engaged and his job of passing out the tickets was usurped. Instead of being an active participant he was delegated to just "sitting."  Also, when all of the MYO members where given meal coupons Nathaniel was not.  When the adviser passed out "special" bracelets for the kids Nathaniel was not given one.  He worked hard and was VERY happy to be there but he was treated as a "second class member" of a group he so desperately wants to be part of.  Even interactions with peers where difficult at best, but I can't blame them if the advisers are modeling exclusionary behaviors.

Sunday, Rebecca, his sister advocated for him.  Thank you Rebecca!  She made sure he got his meal ticket and she was gracious in working with him on the games.  He worked several games on Sunday and enjoyed his time doing it.  He performed (held the flag) as was planned and the weekend ended.

After the 6pm performance on Sunday I witnessed something very disappointing.  After the children completed their dance demonstration they remained on the dance floor to begin the crowd dancing a folk line dance. I witnessed what I am afraid will continue if  the adults excluding Nathaniel continues.  Both times that Nathaniel attempted to take the hand of a peer to join in the line the child pulled their hand away and refused to take Nathaniel's.  Finally an adult from the crowd took his hand and for the next 35 minutes he danced in the line with a smile on his face.

We need to be inclusive in our churches and their organizations.  We need to teach our children to be inclusive and help them to understand the limitations that certain members bring with them.  If we do not understand ourselves then please ask for help.  I am going to ask, again, to be allowed to make a presentation (or have someone come in) about Autism and what it means.  Hopefully if it is done in a fun and multimedia fashion people will be better informed so that they can truly welcome Nathaniel. Below are some things you can do to help understand yourself.

Active IDEAS to help teenagers understand Autism better

1. Autism's main component is having an Auditory Processing Disorder. Try playing several cd's at one time and read a poem at the same time. Read at the same level of the music. Have the group record your words only. 

2. Another activity, to warm up with, is to have the students place a 3X5 card on their forehead, with their opposite writing hand, hold the pen or pencil, then instruct them to write their name with the card on their forehead and without looking at themselves.

3. Lastly, people with autism often have a greater sense of smell, hearing, or are tactile intolerant (hate the feel of some fabrics and objects). Give students bags with something very smelly in them, then instruct them to keep it closed until you have completed the rules. The rules, remain in seat, be quiet, and write down sentences that you are giving them orally (Say 10 silly sentences). They are not to talk or react. Then they are to open the bags and pay attention to you. It gives a good idea of how challenging it can be for a person with autism that has a great sense of smell to put up with someones stinky feet smell.

4. PULL IT ALL TOGETHER  Put a heavy piece of fabric over the top of your head, then turned the lights on and off, at the same time rub your arm with a piece of sand paper, now turn the sound system up to high and finally spray the room with floral air freshener. While all this is going on one person gives a talk. The point of this exercise is to demonstrate the sensory issues that many hyper-sensitive children with autism face everyday. Imagine being bombarded by your nervous system and expected to learn how to talk, interact, engage, and act like there is nothing wrong with you.

NOTE: Once I find a missing cable I will post more photos and video from the weekend.

Dance Times

The church fesival is this weekend.


Saturday  5pm - 11pm


Sunday 1pm --  11pm

Nathaniel abd the Dance Troupe will be performing as follows:


Saturday -- 9:30pm                             Sunday  --  5:30pm  and  9:30pm

When not performing you can probably see him working in the Children's Area


Saturday  5-9:30pm       Sunday  1-9:00pm


If you can make it please come by.

Saint Anthony's

ANNUAL MAHRAJAN
September 5-6, 2009
Saint Anthony Maronite Church
1145 Amesbury Street
Lawrence, MA 01841
978-685-7233
http://www.stanthonylawrence.org/

Regarding Cardinal Sean

Some of you may have read a blog posting that I had on for a few hours on Thursday.  I decided to remove it after a good friend said something that made me think a bit.  I am taking what he said to prayer at this time.

I want to thank God for good friends that will point out when they think we have errored.

Let us all pray for Sen. Kennedy and pray that by the grace of God he has entered the Heavenly Kingdom.

I would also like to apologize to Cardinal Sean for not respecting him as Shepard.

Should I Sterilize my Autistic Son?

"Should I sterilize my Autistic son when he is about 18?  My husband and I will probably be his legal guardians and we want to save a girl that he might have sex with (and her family) from the possibility of a child or worse the abortion of a child."

This question was recently asked of me by good Catholics struggling with the overwhelming prospect of raising their child.  

This couple is not evil.  They are trying to do what is best; they are struggling with doing what is right and are seeking out the truth.  It is common today to put children with Developmental Disabilities on birth control, to sterilize or to give medication early on in their life to prevent them from fully maturing sexually.  The question they are asking is, Is this right?

Sterilization would be a "simple" solution to a complex problem.  It would also buy into Eugenics -- the study of, or belief in, the possibility of improving the qualities of the human species or a human population by such means as discouraging reproduction by persons having genetic defects or presumed to have inheritable undesirable traits (negative eugenics) or encouraging reproduction by persons presumed to have inheritable desirable traits (positive eugenics).--, which was why Margey Sanger founded Planned Parenthood and was at the core of many of Adolf Hitler's theories.  Sanger  advocated the use of birth control to bring about Eugenics here in the USA and eventually abroad.  Hitler advocated sterilization as a means to his Arlan race.

In the 1930's when Eugenics was rampant in the United States as a philosophy of thought a movie came out that looked at the evil of forced sterilization.  The movie Tomorrow's Children came out in 19 34 and  was about a young woman who wishes to marry her boyfriend and raise a family, but because her own family has been deemed “defective” by the state health authorities–her parents are lazy alcoholics who continue to have children, and several of her brothers and sisters have mental problems–she is ordered by a court to undergo sterilization so that her family’s “defective genes” won’t be passed on to any more children. Her boyfriend and a kindly priest desperately search for a way to stop the forced sterilization before it’s too late.  The movie is available on YouTube through the links posted here.                                                                             Tomorrow's Children Part 1    Part 2       Part 3   Part 4   Part 5   Part 6        

When we force sterilize a segment of our population we create a society where those "unsuited" to preo-create are not allowed to procreate.  It is done with a goal to creates a society avoid of illness, disease, disability, disfigurement, etc... ; however, sterilization though masking itself as a good is really an abomination against God.

The Catechism of the Catholic Church says:

"except when performed for strictly therapeutic medical reasons, directly intended amputations, mutilations, and sterilizations performed on innocent persons are against the moral law."   

"Purifying" society or making my life or the life of someone else easier is not "strictly theraputic."  Yes, it could be more difficult if this adult with Autism fathered a child but committing a sin to prevent this is not a justifiable answer.  We cannot sin in order to prevent future sin. This applies even if we are trying to protect someone else from sinning. You don't know that the baby would be killed by abortion. If a baby were to occur somehow, at some point, it would have the same rights to life as any other baby. Who knows, it might be the way God brings another great saint into the world? If they would not be capable of raising them, there is always the possibility of the girl raising them or adoption.

Then what can we do?

The best we can do is to educate our special needs child to the best of our ability.  We need to be able to discuss with him/her sexuality to the ability they can comprehend.  We need to ensure that they know their body is a sacred vessel not to be touched or compromised.  We need to teach over and over that sexual intimacy is only for marriage.  If we are their guardians through adulthood we need to try to prevent situations where sexual activity may arise.  Also, if they father a child or become pregnant we need to be the VOICE for LIFE even offering to raise the child.

Good intended people are sterilizing children/adults with disabilities.  They are passing out condoms and birth control and doing all they can to prevent procreation.  They do not see the sanctity of sexual intimacy.  They only see the potential "harms" if these children procreate.  They are not bad people, just misinformed.  Let us pray that they see why forced sterilization, birth control, etc... are morally wrong.  Let us pray that they understand we cannot sin to prevent future sin. Let us all work towards better education without sin.

Isolation is the Key to Succesful Integration -- What???

Nathaniel is back from his first day.  And I want to scream.

He was happy and had a good day, by his standards.  Let me talk about the positives.  He came home and was able to name the children in his PDD Classroom (good because they have been the same for 4 years 1/2 of them for 7 years).

 

"I didn't go nowhere!!!  I stayed in the class.  You no like Sam and Bob.  They don't go nowhere.  No gym. No art.  No lunch room.  No Home room. Nowhere, ok!!!!"  Nathaniel's response today when I asked him about going to his inclusion time (names changed of peers for their privacy).

Now the negatives:

1) We Knew he was going to have a new teacher in the PDD Room (the 4th year in a row with a new teacher).  I sat on the interview committee and was happy with the selection.  When we asked him who his new teacher was he said it was the teacher from the classroom next door last year. This was not the one that I thought was being hired -- in fact she did not interview.  Of course, I can not verify because he came home with nothing that says the name of the new teacher.  A nice letter of introduction would have been appropriate.

2)The bus picked Nathaniel up on the wrong side of teh street.  Special Needs children are not suppose to cross the street.  Not a big deal but a simple policy that should be followed.

3) As Is always the case on the first day Nathaniel did not begin any of his inclusionary classes; not even Homeroom or lunch.  They kept him in the "fully Separate" classroom all day.

4) He brought home no list that had the names of teh students in his class or the paras in his class.  It would be nice especially to know who his 1:1 is.  He says there is no Ms. Burns who he has had the past 3 years.

5) Nathaniel had NO special today (art, gym, etc...).  The other students (regular ed) all would have.  He should have had it as inclusionary time.

Nathaniel is made to feel more like an outsider when these issues occur.  That first day is critical to knowing one's classmates.  With Nathaniel too often they will strat inclusion after about 2 weeks of school has occurred and that creates a strong dynamic of him being an outsider, someone who is being thrust into their environment.

Year after year the same issues and no matter what I do to try to make for a smoother start they repeat the same over and over.  I am sick of it!!!!

A new Fight - aka School Year -- Begins

First day of the new school year,  Nathaniel would be starting as a Freshman in High School this year but we kept him back in 1st grade.  That was our first attempt at trying to get over the reading hump.  We gave a second go around at 1st grade; unfortunately, that did not work and still he can not read.

So, he is going into 8th grade and as with any school year we pray for the best.  We pray that the obstacles and trials will be less than the year before and we continue to pray that somehow this year will be the year when Nathaniel begins to read.  It is, ultimately, his greatest obstacle.

Having a child with special needs can be a challenge on so many fronts.  When as child has a developmental disability those challenges are on every front.  In your family you are constantly working towards helping others to understand your child (and lets admit you are often trying to understand your child yourself).  When in public you are always aware of the looks and see the chatter; if you let yourself, you become paranoid and stop venturing out in public.  In church you are faced with having a child that has great difficulty conforming to the expected behavior.  But the GREATEST challenge I feel has been trying to deal with the school system.

We  have only dealt with one but as I begin another year we are still struggling.  Nathaniel is beginning the school year with parts of the current IEP (Individualized Education Plan) rejected.  I have been trying for several weeks to connect with the ETC (Educational Team Chairperson) so that we can "discuss" the areas I rejected to hopefully come to an agreement so that the IEP can be signed and fully implemented.  By starting the IEP with rejected parts we are working off last years IEP now and his education is once again stalled.  No return phone calls, no responses to email requests -- nothing!!!

If we do not reach an agreement we then can go to mediation or a hearing.  This requires us to pay for advocates and/or lawyers and to pay for additional testing (possibly).  We also could have to pay for experts to come testify if it goes to hearing.  Nathaniel is 14 and we have already spent over $14,000 to fight the district for what is just and right.  I would rather not waste their time, my time and unnecessary dollars but it is a game.

The school department has limited resources and if they could I feel they would offer every child what they need for a free and appropriate education, but they can not.  So what do they do?  They offer the minimum to all and up the offerings depending on how vocal you are.  Then they force you to rely on your resources (money) to fight them.  The belief is that everybody has a financial breaking point and at some point in the process you will accept less than you should get because you just cannot financially afford to fight anymore.  For those that can continue the fight the amount of time it takes to push it through the hearings and judicial process is so long that months and even years of educational opportunities are lost on the child while the issues are fought out.  Who wins??

Are the school districts malicious?  No, I don't think so, but they are working with unfunded mandates.  What are they to do? 

They need to do the best they can for all the children under their care and spread around a pot of money way to small and I need to expect the best for Nathaniel and do whatever I can to assure that he gets it.  Too often people that should be working hand-in-hand for the best of the child are forced into an adversarial relationship.  I can only hope that the issues, this year, get quickly resolved but at the same time I am already worried about next year and what it is going to take to make high school a positive opportunity for learning.

He Can Dance!!!!!!!------- Update

Note:  Today is very humbling.  In  24 hours my number of hits has doubled over all the hits up to that time.  I hope I do not disappoint.  God is answering my prayer.  I need to believe that.  I want to be a voice that facilitates people to thin k and discuss and this can only occur if people read.  So thank you and please continue to read and spread the news.

As I  wrote previously Nathaniel has been preparing for the church festival (Maharajahn) this weekend (Labor Day).  This is the largest fundraiser for our church and many take an active roll.  It is two days of Lebanese food, drink, and entertainment.  Their is a Children's area complete with games, bouncy rides, and this year a dunk tank (Nathaniel thinks it is great that Msgr. has agreed to be in the dunk tank -- he has been practicing his throwing.)

Nathaniel is part of the MYO (Maronite Youth Organization) and they are responsible for the children's area and the Lebanese Folk Dance demonstration.  He, and his sister Rebecca, have been working hard to prepare for the dancing especially.

Nathaniel is not the most active person and as you can imagine preparing for this has been difficult but rewarding.  He knows both dances they will perform he just has difficulty actually performing some of the steps.  Rebecca has been upset because he tends to sit down the last 15-30 minutes of practices that last from 90-120 minutes.  The dancing involves a lot of hopping (something he could never even do before he prepared for this) and it takes its toll on him physically.  I am amazed he last an hour.  He may not look correct all the time but he smiles and enjoys the fact that he is part of something.  He is with his peers and mommy and daddy are not there.  He is an individual, a real teenager.  That is what is important to me.

Tonight is his 3rd straight night of practices.  I hope he makes it.  Last night they also had an MYO meeting before the practice to work on posters for the children's area.  Nathaniel and 3 others made posters for the Face Painting.  He was so proud of his accomplishments telling me how he drew faces on the posters and got to sign his name on the bottom of the poster.  It is good to see him excited about something and fitting in.  And, I am so happy that the advisors and other MYO members have welcomed him and are giving him the chance to be Nathaniel and grow with them.

I pray that this experience will continue to be a positive one for Nathaniel.  I pray that his differences in the dancing will not cause people to laugh at  or "talk about him," but rather that they can see the joy that he has being up there on the stage with his peers doing good for the church he so desperately wants to be part of.

Saint Anthony's
ANNUAL MAHRAJAN
September 5-6, 2009
Saint Anthony Maronite Church
1145 Amesbury Street
Lawrence, MA 01841
978-685-7233
http://www.stanthonylawrence.org/