Wednesday, October 22, 2008

The Art Museum

You've gotta love the mind of an Aspergers Teen - or maybe all Teens....

Like any other day, when DJ arrived home I asked "how was your day?" and I got the usual answer "fine". But today was a special day, today DJ went on a field trip to the Art Museum. This was his first time visiting this grand landmark, and I was curious, I needed to know more, so I asked just a few more questions, intended to enlighten me on what new educational information blanketed my child.

We sat down for the ritual snack time and began our conversation. I asked "what did you see at the museum today?" DJ replied "I saw some steps in front, and mom, they looked just like the steps that Will Smith was on in one of the shows of Fresh Prince". That detail certainly caught DJ's attention but I was looking for some more info, perhaps some details regarding a particular painting, or sculpture or a certain artist. So I asked again "was there anything else interesting while you were there?", to which DJ replied "Well, there was some construction going on outside, and my classmate got himself stuck on the wet cement". OK I wasn't being specific enough, so I asked once more "what did you see at the museum?". "I saw some homeless people sleeping under the blankets on the sidewalk."

After a brief discussion about the homeless people, we returned to the questions and this time I tried a little harder, to get to the core of the trip, and so I asked "What about inside the museum, what did you see?" to which he answered "I saw some artwork ". Maybe we're getting somewhere,"What did you learn about at the Art Museum?" I asked. He thought for a moment "I learned that it is the same place that appeared on that episode of Fresh Prince. It looks exactly the same too, except that they were doing a little construction when I went there".

You've got to love it.

Monday, October 20, 2008

EEG, Orthopaedist and Audiology

So much has happened in the last week.

AF had his neurological follow-up, and we got the results for his EEG (electroencephalogram ). The EEG is a test that is done by applying a netting like apparatus, with small electrodes that connect to the scalp with a gel like substance. Those electrodes than transmit Brain Waves activity into a computer, that is monitored by the technician. While we were in a quiet, dim lighted room, AF was asked to sit quietly, try to take a nap, look at strobe lighting, and blow a windmill for a couple of minutes. Each electrode measured the rhythm of brain, and detected any abnormality in electric activity during each test.

EEGs are often used by neurologists to detect seizure activity, brain damage, and even Sensory Motor difficulties. For AF the results of the EEG did not show any seizure activity, thank you Lord. His measurements were in the 7Hz range, which the Doc felt was a little below the normal (8Hz) for his age, but he did reach the normal range a few times, indicating there is no cause for concern.

Incidentally (literally) this summer we found out that AF has a Single Kidney, and Spina Bifida Occulta. When I got the phonecall from the doctor, I nearly fainted. it boggled my mind how this had not been found before. We found this out, because AF had recently undergone x-rays and ultrasounds to find out the cause of his Stomach Pains. Most people with these conditions do not know they have them, until they have ultrasounds for unrelated issues, so however shocking and worrisome, our situation was not uncommon.

A single kidney (Renal Agenesis) happens in 1 out of 750 births and is more prevalent in males. Children with a single kidney grow up to have healthy and normal life expectancies. However, doctors recommend that they avoid contact sports - AF LOVES Ice Hockey, so for now we have him enrolled in a Special Needs Ice Hockey team. There is no Checking, and it is a lot more "peaceful" than regular Hockey Teams. So he can still enjoy playing without the greater risk. We'll need a regular check up on his kidney yearly, but no special diets are needed, but of course a healthy diet is good for everyone. People with just one kidney, have a higher incidence of hearing loss.

Not wanting to leave any rock unturned, we had AF's hearing tested by an audiologist. He was placed in an enclosed, sound insulated booth, while the audiologist, from an adjacent room, asked him to repeat words he heard through a pair of headphones. A computer test was also done to measure any damage to his inner year drums, and AF did well on both tests. I was not schocked, I didn't think he had an hearing issue, however at times, he does seem to have sensitivity to loud noises, or perhaps a hard time self-adjusting to them. Uhmm....

Spina Bifida Occulta is the mildest form of Spina Bifida. It occurs in 10 to 20% of the population and many don't know they have it unless problems appeared in childhood. Occulta means that the spine is open, like in Spina Bifida, but is covered or hidden by a layer of skin or muscle. AF does not appear to have symptoms for us to worry about, which mainly appear in the lower body. He walks well (although he mostly runs or skips everywhere he goes). He can skate and ride his bike too. And the neurologist is not concerned with it.

We finally got to the much awaited orthopaedic evaluation for AF's scoliosis. The medical assistant who measured his legs, indicated that one leg was significantly longer than the other. AF said " Oh no. More things wrong with me?" So while we waited for the Orthopaedist to come in, I attempted to distract him from this new finding by measuring my own limbs. It turns out that I appeared to have one arm significantly longer than the other - "hahahaha!!!" AF laughed. After a short wait - thank goodness - the doc came in and measured his legs again, and behold, his legs were just fine. The assistant did not carefully place his legs at a straight angle and that little infraction caused an inaccurate measurement. Thanks a lot MS. Assistant!!! - lol.
Doc says for now, there is nothing to do, but to re-X-ray in a few months and come back to review any changes in his spine. *** Mental Note - Pray for No Change ***.

Some days, I feel sorry for AF, I wish his life, and ours was uneventful, free of doctor appointment after appointment. But then it hits me, just how "lucky" and blessed we really are, and how much more difficult our lives could have been, should he instead have Kidney Disease, Classic Full Blown Autism, Spina Bifida non-Occulta, Cleft Palate, Severe Scoliosis, and so on. I am truly thankful that God knew just how much I'd be able to handle, and he gave me not one ounce more.

Thursday, October 9, 2008

Living in Autism becomes Alone Together

Yesterday, I decided to spend a good time of my day reading through the Autism Bloggosphere. I found that opinions vary greatly on therapies, diets, behavior interventions, the function levels of autistics, the quality of Special Education, and the causes for autism. But no matter what, our experiences raising our children are very much the same, and autism becomes the center of our lives, especially when more than one child has been affected. So at this point I began thinking if Living in Autism is really a true depiction of our lives, or my family's live in particular. When i read it back to myself, I feel as if this is all that we were meant to do, deal with the autism, and forget about the rest of the world. It just didn't sit right with me at all. I want us to live and experience this beautiful world that God created. I want my children to spend time with others to the best of their ability. And I want to help them to be independent, even though in truth they will always need family or friends (just like anyone else) to live happy and fulfilling lives. They will not be able to do it alone.

And I don't want them to be defined by Autism or Asperger. I want them to learn to live and cope with the bumps on the road, and the holes in their umbrellas. They are loving, happy, creative, funny, a little sarcastic, smart and intelligent individuals. That is what I would like for the world to see. So, as we continue our journey through life, I've decided, we are in it for life, will always do it together.

Wednesday, October 8, 2008

Homeschooling Action Requested

ENOCH of NJ Legislative Alert! Date: October 7, 2008
From: Mark August, Legislative Liaison,
Re: New Jersey Assembly Bill 3123 Update #3
Today with Scott's permission, I am passing on an e-lert sent by Scott Woodruff of HSLDA. His wording reflects the consensus of the task force in its work this week.I'll be posting additional information and talking points on ENOCH's website later this week.
From the HSLDA E-lert Service...
New Jersey--Calls Needed Immediately to Block Restrictive Homeschool Bill
***Dear HSLDA Members and Friends,
Now is the time to speak with one voice and tell New Jersey lawmakers
that the homeschool restriction bill, A. 3123, must be stopped.
This bill would rob you of your freedom, tangle you in red tape, and
let bureaucrats force you to stop homeschooling. Bureaucrats could
mandate subjects and control course content. The bill demands that you
keep mountains of records and interferes with your medical privacy.
New Jersey residents have already paid enough for expensive public
school disappointments. A. 3123 will increase taxes yet again for New
Jersey families because more bureaucrats will need to be hired and
paid to enforce it. Also, millions of dollars in added taxes will be
necessary, if even only a small percentage of homeschoolers put their
children in public school rather than endure the crushing new weight
of paperwork and the threats of school superintendents. And state
revenues will be lost if homeschool families avoid living in New
1. If either bill sponsor, Sheila Oliver (District 34, East Orange,
Clifton, Glen Ridge, Montclair, West Patterson) or Harvey Smith
(District 31, Bayonne City, Jersey City) is your assembly person, call
them and courteously ask them to withdraw this bill. Your message can
be as simple as, "Please withdraw A. 3123. We don't need our taxes
raised to pay for something as pointless as regulation that helps no
one. Studies show that children in states with high homeschool
regulation do no better than those in states with low homeschool
2. Call all the members of the assembly Education Committee (listed
below) and courteously convey your message. It can be as simple as,
"Please stop A. 3123, the homeschool restriction bill. I don't want
my taxes raised to pay for something as pointless as regulation that
helps no one. Studies show that heavier homeschool regulation does
not help children. The law already requires that homeschooled children
get instruction equivalent to public school instruction. That is
enough." Keep calling until you get through.
3. While telephone calls and personal visits have the most impact,
e-mails, faxes and letters can also have an effect.
4. Contact other homeschool families and ask them to help.
Sheila Oliver
15-33 Halsted Street
Suite 202
East Orange, NJ 07018
Phone: (973) 395-1166
Fax: (973) 395-1724
L. Harvey Smith
485-7 Martin Luther King Jr. Dr.
Jersey City, NJ 07304-2305
Phone: (201) 536-7851
Fax: (201) 536-7854
Education Committee
Joseph Cryan, Chair
985 Stuyvesant Ave.
Union, NJ 07083
Phone: (908) 624-0880
Fax: (908) 624-0587 (Note: fax machine not working right now)
Joan Voss, Vice-Chair
520 Main Street
Fort Lee, NJ 07024
Phone: (201) 346-6400
Fax: (201) 346-5385 (Note: home line)
Patrick Diegnan
908 Oak Tree Ave.
Unit P
South Plainfield, NJ 07080
Phone: (908) 757-1677
Fax: (908) 757-6841
Amy Handlin
890 Main St.
Belford, NJ 07718
Phone: (732) 787-1170
Fax: (732) 787-0356
Mila Jasey
15 Village Plaza
Suite 1B
South Orange, NJ 07079
Phone: (973) 762-1886
Fax: (973) 762-6118
Joseph Malone
311 Farnsworth Avenue
Bordentown, NJ 08505
Phone: (609) 298-6250
Fax: (609) 298-6359
Paul Moriarty
129 Johnson Road
Suite 1
Turnersville, NJ 08012
Phone: (856) 232-6700
Fax: (856) 401-3076
Nellie Pou
100 Hamilton Plaza
Suite 1403-05
Paterson, NJ 07505
Phone: (973) 247-1555
Fax: (973) 247-1550
Ruben Ramos
70 Hudson St.
7th Floor
Hoboken, NJ 07030
Phone: (201) 714-4960
Fax: (201) 714-4963
Scott Rumana
155 Route 46 West
Suite 108
Wayne, NJ 07470
Phone: (973) 237-1362
Fax: (973) 237-1364
Joseph Vas
276 Hobart St.
Perth Amboy, NJ 08861
Phone: (732) 324-5955
Fax: (732) 324-1879
David Wolfe
852 Highway 70
Brick, NJ 08724
Phone: (732) 840-9028
Fax: (732) 840-9757
Here is a summary of what A. 3123 would do:
1. Give the superintendent and school board power to force a family to
stop homeschooling if they believe the child is not getting an
"appropriate education." This means whatever the superintendent and
school board say it means because it is not defined. A bureaucrat
would have power make a life or death decision over your homeschool
2. Give the Commissioner of Education power to mandate courses and
course content ("objectives"). Families would no longer be free to
decide what to teach.
3. Require parents to list objectives in every mandatory subject. Any
family whose list does not satisfy the superintendent will be in
4. Require parents to send a notarized letter and register every
homeschooled child annually.
5. Require parents to prove that the children have received all
medical services and immunizations the law requires.
6. Require parents to certify that adults in the home have not
committed certain crimes.
7. Require that parents provide 180 days of instruction and turn in
these records annually (and also as often as the superintendent
requests, if he has "reason to believe" the student is not getting
"an appropriate education"):
> list of reading materials
> writing samples
> worksheets
> workbooks
> creative materials
> standardized testing in grades 3, 5and 8 (with parents being prohibited from administering the test)
> an annual evaluation by a person other than the parent, after an interview and review of materials. The evaluator must certify the student is receiving an "appropriate education". The evaluator must be a: (a) licensed psychologist, or (b) certified school psychologist, or (c) New Jersey public or private school teacher, or (d) New Jersey public or private school.
*** The organizations of the New Jersey homeschool task force are united in opposing this bill: HSLDA, Catholic Homeschoolers of New Jersey (Kevin Kiernan), Eagle Forum of New Jersey (Carolee Adams), Education Network Of Christian Homeschoolers of New Jersey (Mark August), New Jersey Homeschool Association (Nan McVicker), and Unschoolers Network (Nancy Plent).
Thank you for standing with us for freedom.
Sincerely yours,
Scott Woodruff
HSLDA Staff Attorney

The HSLDA E-lert Service is a service of:
Home School Legal Defense Association
P.O. Box 3000
Purcellville, Virginia 20134
Phone: (540) 338-5600
Fax: (540) 338-2733

Diagnosis X

DJ was 9 year old when we finally received an high functioning autism diagnosis. It wasn't that he was "typical" before the age of 9, but no one was willing to diagnose him with it before than.
At 2, we knew he wasn't developing language and social skills like other children, but our pediatrician did not think there was anything wrong. He thought he would grow out of it. So instead, I thought, maybe it's me, if there is nothing wrong with my son, than I must be doing a poor job as a mother. So I went to work and placed him in a daycare/nursery school for 1/2 day, hoping to help him develop his social skills and communication by being around his peers, and a pre-school teacher.
After 6 months, the the nursery school contacted me. They told me DJ was not progressing, he cried a lot, didn't have an interest in the potty, and I needed to keep him home until he was ready for school. Still, no one diagnosed him, and no one thought to let me know that perhaps an early intervention program would be advisable.
At almost 4, he wasn't potty trained not did he have an interest, but still, no diagnose. He had limited language, and cried or screamed most of the time. Still no diagnosis.
By the age of 6, he was withdrawn and still struggling, so we demanded from our pediatrician that we see a specialist. He sent us to a psychiatrist, and it was then DJ received his first diagnosis of Social Anxiety and OCD. We began Paxil at this point, but there wasn't much change. We kept him on it for a year. Well, I thought the doctors must know better than me about this stuff. His Fear Factor which was already low, fell below zero, when while at the beach, in a very frightening moment he ran into the ocean. The waves were 10 ft. tall!
At this point we removed his medication and DJ received a third diagnosis of ADD without hyperactivity, and he was prescribed the good ol' Ritalin. The Ritalin helped him relax in class, not at home. It sure made it easier for his teacher, I am sure. But his language didn't improve, and his classwork didn't improve. However, we did have a zombie for a son, and that was not the outcome we were looking for.
So in second grade we began our IEP process with his school, and DJ received his first classification (OHI - other health impaired). At our first meeting, Paul and I expressed our concern, that DJ's behaviors were very much like Autism, but he had not yet received a diagnosis. Our pediatrician did not feel the need for a Neurological Evaluation unless the school was recommending it. Regardless of our concerns, it would take yet another year before the school would have DJ evaluated by a neurologist. In his first evaluation, the neurologist did not diagnose him with Autism, but expressed concerns with a possible Pervasive Developmental Disorder.
Anyhow, the school would still keep his OHI classification for one more year, until the 5th grade. When a second re-evaluation determined that DJ did indeed have High Functioning Autism, which was later changed by our current private neurologist to Asperger Syndrome. ASPERGER SYNDROME??? I had never heard of it before. I didn't know if I should cry or if I should laugh or smile on that day. It all made sense to us now, at last there was an explanation, for the madness in our lives.
Well today, I still have mixed feelings about the whole thing. I wonder if we had gotten help earlier on, would DJ be better off today? Would ABA, and bio-medical, and Early Intervention have helped?
Well, we will never know for sure, but today he is well on his way, to someday becoming independent. What did it take? Lots of patience and nurturing, and encouragement. Treating him "normal" as he truly is. Accepting him for who he is. Embracing his strengths and his special interests. But none of this would have been possible, were it not for his strength and perseverance. I am so proud of the young men he has become. And I am thankful for the lessons I have learned along the way.

Tuesday, October 7, 2008

Autism Times Six !!!!!!

The other day I was watching Jon & Kate Plus 8 ( on the Learning Channel. I love to watch them. I think it is so brave to put your family outhere for the world to see, but I also learn from them as I watch each week, and look up to them, and their ability to maintain structure in their home, and keep sanity. So one night a couple of weeks ago, I imagined in my mind, what the story would be like, should their children have autism ( I was not wishing it on them, please). Just wondering if having a show with a family that had one or two children with autism, would somehow help the world understand autism better. So behold, a few nights ago I hear about AutismX6. Was someone reading my mind???

AutismX6 is a small documentary that aired on Discovery Health Channel on October 4th. The family featured have 6 children all on the Autism Spectrum. Two of their angels have classic autism, they are non-verbal, the oldest is now 14 and has High Functioning Autism, he so reminded me of my 13 ear old. The two after him have Aspergers, and they are so much like my 10 year old. Their youngest has PDD-nos. The Kirtons have a website They have a Foundation to help other families with Autism, they have an awesome Autism Awareness T-Shirt Collection they sell, and a couple other home based businesses to help support their family. Their website is full of resources for families as well. And is the link to their blog story.

Each of these moms (and dads) was given incredibly unusual situations. I admire Kate (J&K+8) so much, and envy her organizational skills, for her strength as a mother with so many little children. I admire Robin (the busiest mom on earth), who's had to make sacrifices unlike any other mom, who has the most admirable unconditional love and kindness to give her children, who's able to nurture them like no one else. Each one of these moms was given special gifts that only they could ever handle. God knew what he was doing :o) with these two. GOD BLESS THEM Abundantely...

Thursday, October 2, 2008

Homeschooling Freedoms in NJ are being Threatened

On September 22, 2008, Assemblywoman Sheila Oliver and Assemblyman L.Harvey Smith sponsored and introduced Legislature to regulate Home Education Programs. This legislation would require parents who choose to homeschool their children to register their children with their local school children and regulate oversight of home education programs by school boards and superintendents.

Parents choose to homeschool for many reasons. There are parents who want to select the curriculum their children learn for religious reasons. There are parents who want to improve the quality of their child's academic performance. There are parents who prefer this method, to provide their children a well rounded social experience free from bullying. There are health reasons, special needs, families who travel, families who do not have access to good public schools an on and on.

For parents of Special Needs children, homeschooling is a Gift. For children who have Aspergers, participating in a regular educational schedule is often prohibitive. Many have sensory or physical difficulties, that make it impossible to fully participate in a regular classroom, others have such difficulty navigating the social arena, and are not able to handle the school experience, even with supports. There are many districts who do not have the resources to help and support children with higher functioning Autism, Aspergers and a host of other Neurologically based Learning Disabilities. Many children with these difficulties, face lifelong depression, loneliness, and stigma.

Many parents choose to take their Special Needs children out of the public schools and educate them at home, while providing them structured social opportunities where their children can learn, thrive, and experience social interaction at their own pace. The benefits of homeschooling for Aspies goes beyond the Social Opportunities, their parents can also pick and choose from a wide range of curriculum that emphasises their children's interests and strengths, and prepares them for future employment and independent lives.

For many teens with Aspergers, the inability to navigate the social arenas at their local public schools, leads them to lifelong depression and loneliness. For younger children, the lack of appropriate supports in the public schools, leads to behavior problems, stigma, and low self esteem.

This legislature makes a point to offer oversight, by the same public educational system that habitually fails to educate Special Needs Children in many parts of our state, the same system that exposes children of Special Needs to abuse, without oversight. It gives the Board of Education and Superintendent the ability to control what is taught and terminate a parents right to homeschool based on their disagreement with the curriculum being offered. It gives the Board of Education and Superintendent the ability to force a child with Aspergers or ADHD or other learning disability, back into a school system that is currently failing them.

If this legislation becomes law, parents will loose their rights in the choices they make for their child's education and can be forced to educate a child in a Government Institution. Taking their constitutional rights, and God given rights to decide how their children are educated, much the same as communist, socialist, and Nazi based idealism.

Read the legislation, and please note that no where on the list of regulations, does this legislation ensure that Special Needs Homeschoolers will also be given the right to receive services through their school system, such as speech or occupational therapy. In other words, the government and local school system, will control your homeschool, but you foot the bill for their decisions twice.

The cost to the taxpayers, for all the litigation and regulation will be atrocious, as parents will have to go to due process and mediation to get their curriculum, and homeschool approved.

Dear tax payers - We will all be paying more taxes for this. Don't let this one go by us

To read the legislation click here



Please take the time to read the bill. Please take some time to pray for the N.J. Homeschool community, the State leaders who will be discussing plans of action, and for our legislators