lj cohen ©2000-2004 our story: birth to one year early development zp. was born in 1993 after a...

LJ Cohen ©2000-2004

Our Story: Birth to One YearEarly Development

P. was born in 1993 after a difficult labor, via c-section

He was a happy, alert baby who was breastfed for 1 year

He had multiple ear infections, multiple treatments with many antibiotics, beginning in infancy

He required ear tubes at 9 mo.

LJ Cohen ©2000-2004

One to Two YearsEarly Development, cont

He hit all major gross motor milestones normally (rolling, sitting, pulling to stand, walking, etc)

Language development was advanced speaking in multi-word sentences at 18 mo.

He was never interested in fine motor tasks (puzzles, drawing)

Very engaging and social with strangers

LJ Cohen ©2000-2004

One to Two YearsEarly Development, cont

He had an early and intense interest in books we had to read the same books and sing the same

songs in the same order for bedtime every night

He was physically awkward and clumsynot interested in throwing/catching a ball

At 2 years, he began to wear glasses for extreme farsightedness

LJ Cohen ©2000-2004

Two to Three YearsThe Toddler Years

He was content to play by himself He would talk to his stuffed animals in his crib

for an hour each morning He loved to line up his wooden trains

He was fascinated with Thomas the Tank Engine

He was extremely sensitive to noise, tastes, temperatures, and textures

LJ Cohen ©2000-2004

Two to Three YearsThe Toddler Years, cont

He was routine-bound and schedule changes resulted in tantrums Unconsciously, we began to structure our home

life to accommodate to P’s needs. We avoided dining out, surprises, changes to P’s nap times, etc.

His baby brother was born when P. was 2 1/2 years old this brought huge changes to our lives and an

increase in P’s stress level, difficulty and tantrums

LJ Cohen ©2000-2004

Three to Four YearsPre-school years

He began pre-school at 3 with a difficult transition

He couldn’t remember the names of his classmates and had no invitations to playdates or parties

He was obsessed by dinosaurs, knew his letters, numbers and colors

Did not engage in any fine motor work

LJ Cohen ©2000-2004

Four to Five YearsPre-school years, cont

Parent/teacher meeting at preschool revealed that P. had few friends, difficulty in circle time, motor clumsiness

OT (Occupational Therapy) evaluation ruled out specific sensori-motor problems, but due to his presentation in pre-school, began a short course of OT.

OT suggested we investigate ADD literature

LJ Cohen ©2000-2004

Five to Six YearsKindergarten

P. entered K just before his 5th b’day w/ strong pre-reading (‘hyperlexia’) & weak social skills

The social milieu of a K class with 21 students proved very difficult for P.

We experienced frequent melt downs/tantrums at home after school

We consulted with a pedi-neurologist who suggested the AS diagnosis

LJ Cohen ©2000-2004

Five to Six YearsKindergarten, cont

Early in his K year, P. was started on an antidepressant

It made him agitated and was stoppedP continued to do well academically in

his K classroom, with the understanding of an excellent teacher

P began to develop a small group of loyal friends with whom he could play 1:1 only

LJ Cohen ©2000-2004

Six to Seven years1st Grade

Our understanding of P. decreased the stresses at home and at school

We began him on medication for anxiety

His 1st grade teacher gave him the right combination of structure, predictability, and nurturing

Sibling stresses increase

LJ Cohen ©2000-2004

Six to Seven years1st Grade, cont

I read most of what he reads to help his understanding of social issues

We began to lay the foundation for his understanding of AS Everyone has strengths and struggles

P learns to downhill skiP travels on an airplane alone for a

week’s visit with his grandparents

LJ Cohen ©2000-2004

Seven to Eight years2nd Grade

P begins 2nd grade, same teacher and classroom

P learns to ride a 2-wheeler with the help of an OT friend

Very difficult adjustment to 2nd gradeP is ‘bolting’ out of the classroomP is the ‘canary in the coal mine’ for

stress in his environment

LJ Cohen ©2000-2004

Seven to Eight years2nd Grade, cont

After school program loses staff, structureP begins an after school drama classWe begin cod liver oil supplementationP makes a huge leap in math skills and

fine motor skills, sensory sensitivities decrease

5 yo “NT” sibling is now more of a challenge

LJ Cohen ©2000-2004

Seven to Eight Years summer crisis

Encouraged with P’s successes this year, we try a medication holiday during summer break We wean him slowly off the risperidel He seems to be coping well While my husband is out of town, P has a

crisis He feels worthless and wants to kill

himself

LJ Cohen ©2000-2004

Seven to Eight Yearssummer crisis, cont

P is despondentAfter I put his brother to bed, I try to

talk with P, but he is unwilling to talkWe begin a conversation, writing

notes to each otherHe keeps drawing pictures of himself

being shot. He begs me to get a gun and shoot him.

LJ Cohen ©2000-2004

Seven to Eight Yearssummer crisis, cont

We sit together until he is able to talk and agree that he won’t hurt himself tonight.

I put him to bed and page his doctorsThe next morning, we restart the

medication and see his psychologist.His mood and outlook stabilize within

a few days.

LJ Cohen ©2000-2004

Seven to Eight Yearssummer crisis, cont.

I had never felt so frightened in my life. Our son was so vulnerable and there seemed very little I could do to comfort him. Whether or not to medicate is a personal issue that I will not debate here. In our situation, and at this time, we have decided to keep P. on his current medication regimen. It enables him to manage his anxiety and to be a kid.

LJ Cohen ©2000-2004

Eight to Nine Years3rd Grade

P. begins 3rd grade. Challenges include: Transitioning to a new teacher and classroom Increased academic demands, including the

start of state mandated standardized tests Beloved art teacher retired at end of last

year, new art teacher is a big disappointment to P.

Hebrew school increases to 3 days/week

LJ Cohen ©2000-2004

Eight to Nine Years3rd Grade, cont

My fears: Hebrew school will be a disaster

stress of additional 2 days coupled with a very rigid teacher

increased demands with Hebrew school homework on top of academic load

expectations of beginning mastery in reading hebrew

I anticipate pulling him out of Hebrew school and using private tutoring

LJ Cohen ©2000-2004


Surprise! P enjoys Hebrew school and the

challenge of learning to read Hebrew The rigidity of the teacher bothers him

sometimes, but she is highly structured and the classroom ‘feels safe’.

3rd grade teacher is an excellent match for P: highly structured, even tempered

His best friends are in his class this year

LJ Cohen ©2000-2004


The Social Minefield P begins to experience teasing and

bullying on the playground and at the afterschool program

It seems to be coming from one particular child who used to play with P quite often

I speak with his mother about the verbal taunting, but nothing really changes

This boy is in his 3rd grade class

LJ Cohen ©2000-2004


The teasing continues throughout the year It is often subtle and difficult for P to

pinpoint It often feels to P as if he’s being singled out

in playground games to be ‘out’ P feels as if this other child changes rules in

games specifically to make P lose P feels as if this other child is turning P’s

friends against him.

LJ Cohen ©2000-2004


P begins regular counseling, outside of school

P allies himself with several boys who are a good match for his temperament and style

P continues to do well academically, scoring a perfect score on a national analogy test. His classmates cheer for him when the announcement is made at school.

He also scores a perfect score on the statewide standardized exam.

LJ Cohen ©2000-2004

Eight to Nine yearsSummer before 4th grade

We attend Autreat ‘02, a 4 day retreat in upstate NY sponsored by Autism Network International, a self-advocacy group for individuals on the Autism spectrum.

It is an overwhelmingly positive experience for me and my 2 sons

The atmosphere is accepting and we feel ‘normal’ here finding a community of others with AS and autism

helps P not feel so alone We are looking forward to next year’s autreat.

LJ Cohen ©2000-2004

Nine to Ten YearsFourth grade

P. begins 4th grade. Challenges include Transitioning to a new teacher Increasing academic demands Increasing writing The challenge of learning cursive Increasing demands of 3 day/week

hebrew school

LJ Cohen ©2000-2004

Nine to Ten YearsFourth grade, continued

P. begins karate and really enjoys it. He quickly moves from white to

yellow belt, then orange and by the end of the school year had earned his blue belt and attends class twice a week.

We see huge gains in his balance and coordination and self confidence

LJ Cohen ©2000-2004


His 4th grade teacher is a good match for P. She is seasoned, straightforward, and appreciates P.’s unique personality.

There is a teacher’s aide in the classroom who is also wonderful with P.

P. continues to be able to access the curriculum with small adaptations in the classroom.

Cursive is laborious and I have difficulty getting him to practice or use it for assignments.

He is not competent enough a typist to use a keyboard consistently.

LJ Cohen ©2000-2004


P.’s younger brother is having significant difficulty in 1st grade. We can no longer ignore his learning issues and begin to consult with his teacher and the school team.

School based testing reveals a huge gap between E.’s verbal and performance scores consistent with Nonverbal Learning Disability (NLD)

LJ Cohen ©2000-2004


I discontinue P.’s psychotherapy. I did not feel P. and the therapist had developed the kind of rapport needed to do effective work, and P.’s schedule is getting much busier than he or I like.

Monday and Wed are his only “free” days—tues, thurs, and sun are hebrew school, fri is karate.

Homework demands about 1 hour/night, (fortunately ½ hour of that is reading, which P. does not consider work)

LJ Cohen ©2000-2004


E.’s distress and frustration with school and with his brother continue and erupt in intense tantrums, which in turn, stress P.

We decide, on the advice of E.’s physician, to try him on desiprimine. It is a class of older tri-cyclic anti-depressant that in children like E. can help executive function.

Within a few short weeks, (without knowing about the medication) the school is reporting a significant improvement in E.’s ability to access the curriculum. He is slightly less volatile at home.

LJ Cohen ©2000-2004


P and E are both fragile emotionally and often end up setting each other off

There are frequent outbursts and tantrums E is often physically aggressive with his older and

(larger, stronger) brother—he has bitten and kicked him on several occasions

For some reason, P has never really retaliated physically, but the tension certainly vibrates between them some days.

I often feel like a referee and lose my own temper and shout far more than I want to.

LJ Cohen ©2000-2004


P. is beginning to unravel with the stress of hebrew school. All our fears from last year have materialized.

The teacher the school hired showed up several weeks late.

The substitute was given little support The regular teacher had a poor command of

English and little ability to manage a classroom—she literally walked out and quit one day.

The students are rude and disrespectful and the classroom is a nightmare for P.

LJ Cohen ©2000-2004


We meet with the hebrew school to try to improve things in the class.

After sitting in several class sessions, it is clear that the current situation is a poor match for P.

We pull him out of hebrew school for the remainder of the year and have him work with a private tutor.

LJ Cohen ©2000-2004


P.’s stress is lessened and he is able to attend karate 2 days/week

Academically, he is extremely strongHe continues to do his homework

with a minimum of fuss, though he can be careless, especially with the mathematics

LJ Cohen ©2000-2004


E. continues to struggle academically. Reading is a laborious process and he is easily frustrated and distracted. He is beginning to notice his classmates passing him and this increases his distress.

He is, however, beginning to show artistic talents in painting and clay

LJ Cohen ©2000-2004


Both boys benefit from a break from the school year as we take them out of class for a week’s ski vacation in Utah.

Both of them show huge gains in their skiing ability, out-skiing their poor mother on black diamond trails, no less.

LJ Cohen ©2000-2004


Social issues continue to plague P. and E. as well.

P.’s circle of friends seems to have narrowed this year—one of his big issues is his difficulty playing with more than one child at a time and his lack of desire to participate in team sports. The older he gets, the more the kids move away from the things P. is interested in.

LJ Cohen ©2000-2004

Nine to Ten YearsSummer after 4th grade

We attend Autreat, 2003 and it is just as much a profound experience as the previous year’s trip.

The rest of summer is fairly uneventful—P. and E. enjoy their summer day-camp experiences.

On the advice of P.’s psychiatrist, we wean him off the risperidal. This time, he does not become suicidal, but does become far more emotionally fragile. We start him on a small dose of zoloft which helps significantly.

LJ Cohen ©2000-2004

Ten to Eleven YearsEntering 5th grade

P is assigned a wonderful 5th grade teacher She is firm, organized and kind She is able to work effectively with P

and he thrives academically

LJ Cohen ©2000-2004

Ten to Eleven YearsHebrew School

We have decided on an alternative hebrew school, not affiliated with our temple P is in a small group of 4 children with 1 teacher Environment is more casual, with emphasis on

community rather than academics P is the oldest child there and is frustrated by the

‘day care’ feel of the school He often presents with headaches on hebrew

school days

LJ Cohen ©2000-2004

Ten to Eleven YearsHebrew School

Despite working with the hebrew school teachers and administration, it becomes clear that this is not a good match for P

The program is in its first year and undergoes a lot of transition, with several teachers leaving

The curriculum seems weighted to the younger children

The teachers report that P is being inappropriate in some conversations, ‘bragging’ about beating up his little brother It is clear that this is simply about looking good in the eyes

of the other children We pull P out in early spring; we will return to the

temple’s program next fall

LJ Cohen ©2000-2004

Ten to Eleven Years

P continues to have success with and enjoys participating in Karate. He moves up several belts through this year, ending up as a red belt by spring.

LJ Cohen ©2000-2004

Ten to Eleven YearsSocial Issues

P’s circle of friends becomes smaller and smaller

It is rare that a friend calls him to playHe has one strong friendship with a

child at another elementary schoolHe plays more and more with his

younger brother and his brother’s friends

LJ Cohen ©2000-2004

Ten to Eleven YearsSocial Issues, cont

At the 5th grade end of the year party, P is horsing around with another student

The other boy gets suddenly furious and tackles P to the ground

Parents intervene, gently. The other boy flees the party and cannot be found

P is inconsolable, feels it is *his* fault This child is eventually found, safe The issue had *nothing* to do with P or the way the

boys were playing It is a huge learning experience for P to realize that

*ALL* children can struggle with emotions, even if they look ‘cool’ on the outside

LJ Cohen ©2000-2004

Ten to Eleven YearsSibling Issues

E, now in 2nd grade continues to have organizational problems and emotional lability. We switch him to strattera which almost immediately shows dramatic effect

P and E are able to (for the most part) play well together, although normal sibling issues seem to be magnified by their difficulty with emotional self-assessment and communication skills

E allows P to join in with his friends. P is well liked by E’s friends

LJ Cohen ©2000-2004

Ten to ElevenPre-puberty issues

P has begun to show signs of beginning puberty He needs to wear deodorant He needs to shower and wash his hair daily

He is very resistant to this and we have minor battles almost every evening

Sarcasm is beginning to creep into his communication with me at home

It may be age appropriate, but it’s extremely frustrating!

LJ Cohen ©2000-2004

Ten to Eleven YearsPlanning for Middle School

P has his IEP meeting in the spring of 5th grade We all agree that academically, he is on track He will need support to manage the

organizational demands of a new school, switching classes/subjects, homework Team recommends an integrated program for children

on the spectrum P is extremely resistant to anything that makes him

seem different from his peers We compromise on using the integrated program leader

as a ‘touchstone’, with support early in the year that can decrease as P’s comfort increases. He will attend all regular academics with his peers

LJ Cohen ©2000-2004

Ten to Eleven YearsSummer before 6th grade

We plan a low key summer, P gets to choose his summer camp experiences and enjoys them all (day camp)

We have a wonderful family holidayThe boys have a great week alone

with their grandparents

LJ Cohen ©2000-2004

Where we are today

P understands that his intellectual age and his social age are not the same as his calendar age He understand that his social age is about 3 years

behind his chronological age, which is why he is more comfortable with his brother’s friends

He understands that his intellectual age is many years ahead of his chronological age, which is why he is so comfortable talking with older children and adults

I think he is confident that he will catch up with his peers, but he remains worried about middle school

LJ Cohen ©2000-2004

Where we are today,continued

Rigid thinking, social demands, and his own perfectionism continue to be challenges

He continues to have difficulty judging his emotional state, expressing it in words, and reacting appropriately

He is comfortable with the word “asperger” and understands what it means

We continue to monitor both children’s stress levels

LJ Cohen ©2000-2004

Where we are today, continued

Asperger Syndrome is part of the tapestry of our family

I am starting to read and gain information on NLD to help our younger son navigate through school

LJ Cohen ©2000-2004


I often feel daunted at the prospect of dealing with 2 children, both of whom seem to need my undivided attention

LJ Cohen ©2000-2004

Where we are today, cont

It is hard for me to find outlets for my own stress. I continue to work part time, in an effort to find balance I do tai chi and meditation I make sure I have some hours in the week alone,

without the demands of work and children I often feel as if I had 2 personas

the confident one I use for the outside world of work and school meetings,

the one who vacillates between elation at her childrens’ accomplishments and despair at their future challenges.

LJ Cohen ©2000-2004


We move between worlds--AS and “NT”, not always smoothly, but with increasing knowledge and comfort

We are grateful for the knowledge and support in the AS community

LJ Cohen ©2000-2004

Challenges for the future

Helping our younger son understand his brother and himself

Fostering P’s self knowledge and ability to name and react to emotions

Helping P navigate the world of friendships

Continue to affirm what’s right about our sons to a world determined to focus on what’s wrong.

lj cohen ©2000-2004 our story: birth to one year early development zp. was born in 1993 after a...

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