The Kingfisher

~ Consult not your fears but your hopes and your dreams. Think not about your frustrations, but about your unfulfilled potential. Concern yourself not with what you tried and failed in, but with what it is still possible for you to do. ~  Pope John XXIII

I love that my kids have an interest in artwork.  As a self taught artist, I know it's important to enjoy the process.  I try to teach this idea to my children.  However, Aren tends to be super inpatient about many things.  He frustrates easily when things are very challenging.  The message I send is do your best.  That everything newly learned takes practice.  It is a mantra in my home "practice makes better".  I don't like saying perfect because, perfection is added pressure.  I want my children to enjoy learning and the process of discovery.

Aren recently learned about the Kingfisher bird.  I think he heard my daughter mention it's her favorite bird.  Aren looks up to his big sister and in many ways, she is a good role model for him.  Jade, my daughter always carries a book or two wherever she goes and so does Aren.  It's a very endearing thing.

This drawing is Aren's first of a Kingfisher from his memory.  I asked him to explain his process to me.  He said, he made the body like a "gun".  I thought that was interesting and clever.  The gun image in his mind helped him although I'm not an advocate for guns of any kind.  I didn't want to squelch his excitement with my sensibility about guns so I told him it was a good approach.  Aren felt very excited about his first effort.

My kids see me when I create art.  I look for images or photograph my own as reference material.  Aren asked me to find a Kingfisher on the Internet so he can create another drawing.   He wanted to make another piece by observation and I fully encourage it.  I did a quick search and found this image:

The following is Aren's impression of the above photo:

There was a time when Aren had a very difficult time making shapes.  Artwork is a combination of different shapes.  When I create art, I focus on the shapes and teach my kids to do the same thing.  The drawing above for Aren is an excellent effort in my opinion.  In fact, for him, I think it's impressive.  Well, Aren didn't agree with me.  He became extremely upset and completely melted down.  He cried and carried on for about 10 minutes that his drawing looked nothing like the photo.  He said, "it's horrible"; "it doesn't look like the picture".  This reaction is typical for Aren when he finds work challenging and out of reach from his point of view.  My heart goes out to him but I try to tell him the efforts he makes are very important and if he doesn't give up, with practice he will improve.

Children with special educational needs often require different tools to learning from kids who are neuro-normal.  The perspective of the child on the spectrum is often unlike the child who doesn't have the disorder.  To this day, my son continues to play with his toys in a repetitive manner, IE lining up his trucks and cars.  Challenges that an average kid might take in stride, is greatly amplified for my son.  I don't want my child to feel defeated.  I want him to have the tools to help him succeed and help him feel good about himself.

At the beginning of the school year, on Aren's composition book, I placed a picture of him standing next to the wax figure of  Kareem Abdul Jabbar with the caption, "Defeat Is Not An Option".  When I put it on his notebook, Aren asked me, "what does defeat mean?"   He couldn't pronounce defeat so I had to help him with it.  I told him it means not to give up; to keep trying; to do your best.

"When someone tells me there is only one way to do things, it always lights a fire under my butt. My instant reaction is, "I'm going to prove you wrong!"  ~ Picabo Street ~

I Hate School and What Day Is It?

"When I was a young coach I used to say, "Treat everybody alike." That's bull. Treat everybody fairly."
~ Bear Bryant ~

Yesterday, Aren came bursting through the door declaring, "I hate school".  He then continued in a very whiny voice which at first was difficult to understand, "I had to do math at recess".  And, "it was hard"; "I don't understand".  I asked him why he was made to do the work at recess and he told me because he got it wrong during class time.  My son's upset made me feel very upset, in fact, I felt angry about it.  This is the 2nd time this school term, my son was made to do make up work at recess.  And, today was the 2nd time I requested for the teacher to stop this practice.  This is another example among many where this district disregards the parents input regarding the education of their child.

Aren feels punished and singled out even if he's working in a small group when other kids are having fun at recess while he isn't.  Math is an area of significant weakness for my son.  By making him do the work when he rather run and play will only instill resentment.  The resentment will potentially lead him to being turned off and he will tune out completely from learning it.

My son has PDD-NOS and the disability affects his short term memory.  Last night at dinner, Aren asked "what day is it".  I know that sometimes this is an issue for him so I ask him to tell me "what was yesterday?"  He tried to remember but couldn't.  Aren wanted to know if it was Friday.  My son is allowed to buy ice cream on Fridays which he never forgets.  When it comes to sweets and desserts, Aren is first in line.  So I asked him, "did you have ice cream today?"  Of course, he said no because that is definitely something he would remember.  As much as I tried to get him to recall, it was challenging for him.  We finally told him, it's Wednesday.  This morning, Aren did it again.  He asked, "what is today?"  Although he was told just last night, it was Wednesday, he couldn't tell me that today is Thursday. 

The memory lapses are splintered which is typical to his abilities and disabilities.  There are days when I use deductive reasoning with him, he'll arrive at the answer on his own.  And, then there are other days like yesterday and today, where he struggles to get it right.

"The existence of forgetting has never been proved:  We only know that some things don't come to mind when we want them."  ~ Friedrich Nietzsche ~

My Child Needs This But He's Not Getting That

"To understand the heart and mind of a person, look not at what he has already achieved, but at what he aspires to."  ~ Kahlil Gibran ~

I watched the HBO documentary:  I Can't Do This But I Can Do That, with my family last night.  As I watched it, I couldn't help to think of how my son's educational needs are inadequate in the current setting.  Aren has dyslexia in addition to PDD-NOS.  He could benefit greatly from assistive technology such as speech to text software tools.  Aren has significant problems getting his thoughts down on paper.  His efforts are at first grade level.  The constant realization is making me feel very raw.  When I think on it too much, I feel depressed and at times, sob uncontrollably.  Last night, was no exception, I cried as I watched.

Aren is well aware he is behind his peers.  It bothers him a great deal and I know it's affecting his self esteem.  When we were watching the program, Aren seemed engaged.  He was able to see there are other kids having similar issues and they are learning to work with it.  In fact, some of the kids are able to celebrate their differences.  They have the added benefit of being in a school environment that have the tools to help them work to their potential.  I wanted Aren to see that with the appropriate tools, his learning difference can be addressed.  As we watched, Aren said to me, "I have dyslexia, right?"  I acknowledged him and he started to feel sad but I immediately reminded him that he learns differently and with the right tools, it will make it better for him.

Yesterday, part of his homework assignment was to choose 5 words from the spelling list and write 5 sentences asking a question.  My son could only muster up 3 sentences and each one began with "what" and were 3 - 4 words in length.  Why is it that he is in 3rd grade and only able to produce rudimentary work.  Well, as expressed in my earlier posts, his educational needs are not being adequately addressed because of a mindset that my son is "slow to learn" and this is the "best we can hope for".  If indeed a child is "slow to learn" that doesn't mean a teacher takes a holiday.  It means there needs greater effort on the part of the educators and to bring in added resources to get the job done.  This is called an IEP:

A plan developed for an individual child who through educational testing is determined to have learning disabilities. By law, the child's educational plan is modified to accommodate the child's unique learning requirements

After coming off a horrible CSE meeting in June, I had Aren extensively evaluated over the summer.  In addition to the medical evaluations, we took Aren to the highly regarded NYU Child Study Center in NYC.  We were fortunate to have Aren seen by Dr. Elizabeth Roberts and Dr. Melissa Nishawala.  The doctors have a respectable educational background and expertise with children who have autism and learning disabilities.  The evaluation consisted of 3 intense days.  The first day was the 3 hour parent intake interview.   Following the initial interview,  Aren had two intense days of testing.  In fact, the testing was so thorough that by the end of the 2nd day, he was physically and mentally exhausted.  His immune system was compromised  from the stress and he developed flu like symptoms, IE headache, fever, nausea, etc that lasted for a couple of days.

On many levels, I felt badly I had to put my son through so much.  It seemed almost cruel and unjust.  Not to mention, the financial sacrifices we had to make.  We had to take our son for O/T over the summer and spent $888.00 in therapy fees and transportation.    That amount is small compared to the NYU study fees.  However, I knew my son wasn't mentally retarded.  And, I know his needs are not being adequately met in the current setting.  We were placed in the position to prove and pinpoint Aren's challenges.  In doing so, we expect to have Aren's educational needs appropriately addressed.  Aren needs to be in a smaller classroom with his peers; children with similar challenges.  As shown in the documentary, there are many benefits to an inclusive  placement.  Aren would have more opportunities to focus, receive intensive intervention and educational tools to assist in strengthening weak core areas.

Although I have been advocating for my son since infancy, I've been turning up the heat since Aren entered this school district.  As a parent, I know my child best.  Many parents will tell you when something is out of sync.  It's often referred to has a "gut" feeling.  I'm not interested in making problems for this school district, however, all dirt comes out in the wash and that can't be helped.  I want my son's educational needs met before it's too late.  His needs should have been attended to yesterday but I can't reverse the past.   I have to worry about now and the foundation or lack of it in the present.  I need for these issues to be resolved today.  I can't have my son's educational future short circuited due to a one-sided mentality or preconceived ideas about him.  I worry if race enters into the equation regarding the established mindset in this school district.  Disproportionately, African American children continue to be under educated compared to whites.  Statistically, African American children are diagnosed with autism and learning disabilities later compared to whites.  Yes, I will bring up the race card because, in this situation it might be a very important piece not to be overlooked.

"There also appears to be more confusion among clinicians between autism and other disorders in black children, compared with whites. In this study, black autistic children received more misdiagnoses than whites, and they were more likely to be misdiagnosed as having organic psychoses, mental retardation, or selective mutism. White autistic children were more likely to have been misdiagnosed as having ADHD"  ~ Nearly Two Year Delay In Diagnosing Autism In Blacks by Mary Ann Moon ~

I have to make a case for my son because he needs me to do it.  He can't do it for himself; at least not yet.  I will begin preparing him, however.  Although he is only 8 years old, he needs to understand how to advocate for himself.  I will not wait until he is 14, 16 or 21.  It begins now.  I can't shelter him from the realities of what his parents are required to do on his behalf.  It is his right to be part of and observe the process.  In doing so, he will begin to learn and understand.  I do this because, I'm his mother and I love him.