Reflections of a Mother

This is well worth the read: http://www.autismsupportnetwork.com/news/he-struggles-hes-my-hero

What a touching, honest and heartfelt depiction of this child and his mother's love. JC has high functioning Autism.  His struggles pale in the light if so many. I can relate to this mother's explanation of good days and bad days. Days when JC says new words, eats new foods, plays without screaming, asks for help. Those are days when my heart beams with pride and amazement at how for he has come. And then the days of tears because he can't get his shoes on but won't allow me to help, or screams because someone touched or moved his toy, or the constant attempts to elicit a response of some sort when it feels like I am taking to myself and all he is doing is babbling or screaming.  The bad days make me so thankful for the good days.  And I love every bit of him. I'm thankful that the bad days aren't worse, I enjoy the good days and I thank God for every day. 

I have never told anyone this, but before we had my older son, my husband and I were having fertility issues. We had tried for 2 years to have a child. We had finally decided to do in vitro fertilization. During that time I asked God to please bless us with a child. Even if he needed a special home for an angwl with special needs, I would love any child and be the best mother possible.  We became pregnant the month before we were to start in vitro fertilization. We had a beautiful and healthy baby boy. He is now 7 and he lights up my world. But God remembered my promise, and also blessed up with JC 5 years later.  And I am trying to live up to my promise to be the best mother that he deserves. 

JC's Autism Spectrum

What is Autism?

For almost 2 decades, the Diagnostic and Statistics Manual of Mental Disorders ( DSM-IV),  defined Autism ( Autism Spectrum Disorder) as a variety of disorders known as Pervasive Developmental Disorders.  These are disorders which manifest in developmental delays  in multiple areas of basic functioning skills, usually socialization and communication.  The reason it is called a "spectrum disorder" is because no 2 children are alike in their symptoms.  It is often said that if you know one child with Autism, you know ONE child with Autism.  These delays can range from mild to severe and the symptoms themselves can vary from child to child.  For example, some children are communicative but lack the understanding of social cues and interactions.  This is often the case in children with an Asperger's diagnosis. Other children may be non-verbal and and/or seem to have little interest in social interaction at all, as can be the case with classic autism (the stereotypical Autism that people think of).  And many are in the middle, like JC.   The dichotomy of high vs low functioning Autism is misleading.  Someone may be "high-functioning" cognitively, but may be non-verbal and have low-functioning social skills.  This variety is why Autism is considered a Spectrum Disorder.

The New DSM 5:

Recently a new Diagnostic and Statistics Manual of Mental Disorders ( DSM-5) was released (click here to read more). It altered the description and diagnostic criteria for Autism Spectrum Disorder. Now, There are no subcategories within the Autism spectrum diagnosis (for example Asperger's and PDD-NOS were removed from the DSM-5).  The necessary criterion to diagnose Autism also changed.  In the DSM-IV, there were 3 categories from which symptoms must be present. These categories focused on problems with social interaction, problems with communication, and restricted repetitive and stereotyped patterns of behavior, interests and activities.  With the new diagnostic criteria have been rearranged into two areas: 1) social communication/interaction, and 2) restricted and repetitive behaviors.

Here are the diagnostic criteria from the new DSM-5:

1) All of the following symptoms describing persistent deficits in social communication/interaction across contexts, not accounted for by general developmental delays, must be met:

• A) Problems reciprocating social or emotional interaction, including difficulty establishing or maintaining back-and-forth conversations and interactions, inability to initiate an interaction, and problems with shared attention or sharing of emotions and interests with others.

JC has significant difficulties in social situations where HIS expectations are not being met.  If he is playing HIS game, HIS way, by HIS rules, things are fun and he enjoys social interaction. However, if someone varies from that "scripted" view of how things should go, his anxiety level increased and he is no longer able to function in that environment.
Joint attention is a struggle as well.  He often leads me to an object of interest rather than trying to communicate that interest to me.
For some children, these social issues do not manifest until school age when the demands of social situations become to much for then to handle.

• B) Severe problems maintaining relationships — ranges from lack of interest in other people to difficulties in pretend play and engaging in age-appropriate social activities, and problems adjusting to different social expectations.

JC often prefers to pay by himself, but will play with others when initiated by them. He usually prefers specific toys (cars) or random household objects like bowls and candles.
He has difficulty understanding the necessary social rules in various situations and often doesn't generalize from place to place (for example, he doesn't speak much at preschool, while he does at home).

• C) Nonverbal communication problems such as abnormal eye contact, posture, facial expressions, tone of voice and gestures, as well as an inability to understand these.

JC limited eye contact. This actually surprised me when the doctor mentioned it because I always thought he had adequate eye contact. However, it varies from person to person and he doesn't rely on it as a method of communication. He looks to see, not to relate. His eye contact is fleeting and he doesn't use it to establish "joint attention" (pointing and looking to see if I know what he is looking at).
He also has difficulty mimicking gestures.  He often uses his own version of gestures rather than the actual gesture (for example, he does thumbs up with his index finger extended rather than his thumb; he uses his thumb and index finger to show the number 2 rather than his two fingers; he requests you to follow him by patting his chest, rather than making a sweeping motion with his hand.). These examples are not significant in and of themselves, but they show that when it comes to mimicking, he doesn't view things like gestures from the perspective of the person giving the gestures.


2) Two of the four symptoms related to restricted and repetitive behavior need to be present:

• A) Stereotyped or repetitive speech, motor movements or use of objects.

JC toe-walks, and sometimes flaps his hands in excitement.
He also plays with cars by lying down on his stomach and pushing the in front of his face to see the wheels turn.
He also perseverates in speech (if he says something I have to repeat I back to him exactly as he says it or he will continue to say it)

• B) Excessive adherence to routines, ritualized patters of verbal or nonverbal behavior, or excessive resistance to change.

JC has a very rigid view of the world. He runs "scripts" in his head in any given situation, and if things vary from that "script" he becomes anxious. For example, if we go through downtown and don't turn onto the street to go to school, he becomes upset.
We use visual schedules and social stories to facilitate changes to his expected scripts. I could really talk about this one more, but I have other blog posts devoted to this.

• C) Highly restricted interests that are abnormal in intensity or focus.

This is really the only symptom that I don't see JC having. Some children may be obsessed with trains, others may know everything there is to know about dinosaurs, and some may have an interest in letters and words and can recite passages from books at 18 months old. It can also arise in obsessively repeating an activity with such intense focus that trying to stop that activity causes frustration.

Although he doesn't have these types obsessions, he does have abnormal intensity and focus related to fears and anxiety. We cannot drain the bath water after a bath because he panics and screams. Wind blowing leaves around the yard causes panic attacks as well.

• D) Hyper or hypo reactivity to sensory input or unusual interest in sensory aspects of the environment.

Well, this one needs no explanation. Sensory processing disorder is where we started after all.

3) Symptoms must be present in early childhood but may not become fully manifest until social demands exceed capacities. Symptoms need to be functionally impairing and not better described by another DSM-5 diagnosis.
Obviously JCs symptoms are present in early childhood.
The only other diagnosis that could partially explain his symptoms is a new diagnosis termed Social / Communication Disorder. However, it doesn't take into account sensory issues and rigid behaviors.


Another main difference is the introduction of severity levels. Previously, terms like high-functioning or low functioning were used to describe the severity of symptoms. But these can be misleading because someone who is low functioning on a communication scale may be very high functioning cognitively. The new levels will enable the medical community to describe the level of supports needed based the level severity of symptoms.
Level 1: "Requiring Support"
Level 2: "Requiring Substantial Support"
Level 3: "Requiring Very Substantial Support"


JC's Autism

JC struggles with communication, speech, sensory issues and social interaction. However, he shows more affect than classic autism. In other words, he is interactive, affectionate, attempts to communicate, WANTS to be involved and social. But he doesn't understand the reciprocity needed for proper socialization.  Rather than relying on communication to effectively express his needs or desires, he often seems to assume that others should understand innately what is inside of his mind.
But, JC doesn't fit the "Autism mold" (if there is such a thing), likely because he has been receiving therapy since he was 16 months old.  Although we didn't know at that point that JC was Autistic, we did know he had sensory issues and began therapy and early intervention followed by speech therapy at 2. Even his neuropsychologist mentioned that he had never seen a child receive such early and intensive intervention.  I have no doubt that if he had not received this early therapy, his level of functioning would be much lower than it is and I am so thankful for the wonderful therapists that have made such a difference in his life already!  We have been able to circumvent many issues because of the early therapies and early understanding of his sensory issues especially.  And when you look at each of these issues and symptoms, any one may not affect daily life, but as a group - they impede his development and interfere with daily activities.  Below is a visual that I created to show JC's Spectrum of Autism.  Those items in Red, orange and yellow are the most difficult and have the most impact on daily life.  The others aren't as impeding, but are still prominent enough to be a part of his diagnosis.

He is doing very well, even compared to a few months ago. His speech has exploded and we are making progress in the other areas as well.  The therapies are working to provide him with coping mechanisms as well as helping me to understand "what makes him tic".  My hope is that by the time is is school-aged, he will have made such great strides that he will no longer meet the criterion for Autism.  That does not mean that he will "outgrow" Autism.  It simply means that he will learn to cope, manage and overcome his symptoms.  That is why these years of development are so crucial.

JC is one of those children who was not diagnosed because of the obvious symptoms, and were even told by a developmental psychologist that he couldn't be Autistic because he was social (JC looked at him when he walked in the room and made eye contact a few times).  He likely have fallen through the cracks or perhaps been diagnosed later due to the increase in severity of symptoms as school demands increased.  When JC's social interactions became increasingly troublesome,  I  researched enough to know that the issues he was having were synonymous with autism, even if it wasn't the "classic" non-interactive type. After all, it is a spectrum disorder.

When I found the neuropsychologist that diagnosed JC, I knew right away that I had found the right doctor. He listened to my concerns, never dismissed JC's struggles, and provided an in depth evaluation. That's all I wanted.  I didn't care if he said he had polka dotted monkey disorder... As long as he had taken the time to evaluate and listen. When we received the diagnosis, I agreed with everything he said. He even picked up on things that I hadn't noticed like limited eye contact and joint attention (more explanation later). But he did point out that JC doesn't fit the classic autism diagnosis because he "shows more affect" than expected with classic autism, but he still was on the Autism Spectrum.

For these reasons, I am actually happy about the changes to the DSM criterion. I feel that the new standards better describe the struggles that JC faces, especially the sensory issues (which weren't included at all before).  Although he still scored on the spectrum before, the new criterion portray a clearer picture of his diagnosis.


No matter what the criterion or severity levels... The important thing to remember is that no 2 children are the same. Every Autistic Child's Autism is as different as every non-Autistic child's neurotypicalism. No 2 children are alike... Period.

Scripts and Social Stories

Scripts

I often say that JC has "scripts" for various social situations and when these scripts aren't followed, his anxiety level rises and he often cannot function.
Think for a  minute if you went to a foreign country.  Rather than driving on the right side of the road, everyone drove on the left. And what if instead of eating at the table, you ate on the floor. And instead of sleeping in a hotel room you slept outside.  Twins would all be very unnerving.  ESPECIALLY if no one warned you about it.
JC relies on routines so heavily to give him the understanding of what to expect in situations. He then develops a script in his mind as to what that situation should look like (for us, things like: we drive on the right side of the road, we eat at a table, we sleep in a bed in a hotel).  And if that script changes (especially without notice) his expectations aren't met and he cannot adjust by himself.

I think of it like this:
JC lives in a box - his comfort zone.  He has all of his rules and scripts setup inside that box like wallpaper.  Sometimes he allows someone in there with him, but they have to also follow his scripts or he quickly kicks them out.  Occasionally he will venture outside of his box, but quickly retreats back inside the safety of that comfort zone when life gets overwhelming.   The walls of the box are always changing.  Sometimes, they are like clear plexi-glass.  He can look through to the outside world and sometimes interacts by meeting you half way.  And other times, the walls are made out of bricks and there is no getting in or out.  The majority of the time, I would say the walls are made out of sticks.  Strong, but able to be permeated with the right tools.  And just like we build our houses to protect us from the elements or rain, wind and sun - JC has built his box to protect himself from the unknown, the unexpected, and the unexplained elements of his world.

So how do we get through into JC's box?  Certainly not by knocking the walls down like the big bad wolf or trying to drag him out kicking and screaming.  We have to remember that this box serves a purpose for him.  So we work to be included in the box, then from the inside out we can gradually adjust the structure, add to or change the scripts and maybe chip away bit by bit at the rigid walls.

This is why we use visual aides and social stories.

What are Social Stories?

Social stories help explain what is expected in certain situations. They can be simple short stories (we use pictures along with them) that describe a social situation and give the child a "script" to follow when one is not readily available already.  For our example above, it would be like sending us to a foreign country with a guide book that says "we drive on the left side of the road, eat on the floor and sleep outside".  All of a sudden our experience isn't surrounded by anxiety and uncertainty.  We may not like it - its still outside of our comfort zone - but at least we know what to expect.

Social Stories contain certain types of sentences that describe social situations and explain in detail what is expected in those situations.

• Descriptive Sentences: these are statements of fact... e.g: "Sometimes I ask for a cookie"
• Perspective Sentences: these are statements that refer to or describe an individual’s internal state, their thoughts, feelings, beliefs, or physical condition…e.g. “I like cookies"
• Directive Sentences: these describe desired responses to social situations... e.g. "If Mommy says "no" I don't scream or cry"
• Affirmative Sentences: these often express a commonly shared value or opinion within a given culture…e.g. “I can wait or choose something else"

It seems simplistic but after hearing the story several times, the concept is engrained and when the situation arises, a simple reminder will help ease the anxiety of the situation.

In addition to molding behaviors, another important reason to use social stories is to provide preparation for the unknown. We went on vacation recently and used a social story so that JC would have a preview of what to expect so that all of the new sights and activities wouldn't overwhelm him. They are a useful tool, along with visual schedules and first/then cards to alleviate stress in day to day activities.

A First Look at the IEP Process

In a few months JC will start the process of developing an Individualized Education Plan (IEP) to transition him into preschool & beyond.  My head is spinning with questions and I want to be as prepared as possible going into this...
I am very happy to share with you a guest post from Alison W regarding what a parent needs to know about the IEP process.  Lots of useful information here!  Enjoy!

IEP Team Members

As a parent you are the first member of your child's IEP team. But there are other members who come and go depending on the needs of your child. As you child moves from Part C with an IFSP to Part B with an IEP the core team members may change.

The New Players on the Field

While there are array of people who will move onto and off of the IEP field, two players will probably do the largest amount of ball-carrying for students with special needs. They're the ones who will send you letters announcing scheduled meetings, and the ones who will hand you the 5,000 copies of the booklets on knowing your rights. They'll be responsible for evaluating your child on arrival in the system and periodically thereafter. One of these individuals will probably be assigned as your child's case manager. This team may change year from year without notice.

Special Education Teacher: The special education teacher is the person who will give your child tests that assess level of educational achievement and ability. The special education teacher may make observations during the meeting about the appropriate educational placement for your child. Should your child need special learning techniques, modifications and accommodations in the classroom, the special education teacher will be able to strategize those with you and the teacher, and help monitor progress. This teacher will be charged with outlining your child's educational progress and prognosis for the IEP, and with gathering opinions from all other teachers as appropriate. What you hear from the teacher at the meeting should be consistent with what you've been hearing throughout the year. If not, ask why. If you haven't been talking with the teacher throughout the year ... well, then I'll ask, why not? Don't be a stranger.

The Regular Education Teacher: From the school's point of view, nobody knows your child better than the teacher. So it's natural for the teacher to be involved in the planning of the IEP. Your child's regular education teacher will ALWAYS be at the meeting. That's good news for you if you've built a rapport with a teacher, or if a teacher has a particularly good feel for your child's abilities and needs.

Other players may include: Speech-Language Pathology, School Social Worker or School Psychologist, Physical Therapist (PT), and Occupational Therapist (OT) depending on your child’s needs. Remember services can only be added or taken away with your permission. Don’t be afraid to tell the team what you think should be done and why. They too, will tell you why these players may be needed or no longer needed.

Be sure that all team members are present. While you can call an IEP meeting any time you wish, sometimes the annual review is the only one you need. Attendance is important!

Don’t forget you are the most important member of the IEP team. Yeah, you, the parent! You are the most important member of your child's IEP team, far and away. You are the expert on your child, and your child is the reason all those people are sitting there. You are the only one to have seen your child in multiple settings, in multiple school years, in multiple moods. You are the only one who has talked to the doctors and the specialists. You are the only one who has traced your child's development from early days until right now. And you are the only one who will still be involved in your child's care years from now, when the decisions made at this table will bear fruit.

The IEP

What’s an Individualized Education Program (IEP)?

Each public school child who receives special education and related services must have an Individualized Education Program (IEP). IEP creates an opportunity for teachers, parents, school administrators, related services personnel, and students (when appropriate) to work together to improve educational results for children with disabilities.  IEPs are required under Part B of IDEA and cover ages 3 to 21.  The IEP focuses on how to help students be successful in the education setting. Sound educational decision-making includes observations by people who know the child well and objective information from various tests and assessments.

The IEP includes information about the child's present levels of performance on various tests and measures and how they are functioning in an educational setting compared to their peers. The IEP also includes information about goals and objectives for the child, specifically how educational problems will be addressed. The IEP should also include ways for parents and educators to measure the child's progress toward the goals and objectives.

What should be in my child's IEP?

The IEP should accurately describe your child's learning problems and how these problems are going to be dealt with. One of the best and clearest ways to describe your child's unique problems is to include information from the evaluations. The IEP document should contain a statement of the child's present levels of educational performance. If your child has reading problems, the IEP should include reading subtest scores. If your child has problems in math calculation, the IEP should include the math calculation subtest scores.

Goals and objectives

The IEP should also include a statement of measurable annual goals, including benchmarks and short- term objectives. The goals and objectives should be related to your child's needs that result from the disability and should enable your child to be involved in and progress in the general curriculum. The goals and objectives should meet other educational needs that result from your child's disability. Goals are written for 364 days because at day 365 is when your next meeting will be.

The IEP goals should focus on reducing or eliminating the child's problems. The short term objectives should provide you and the teacher with ways to measure educational progress. They should be written to close the educational, behavioral, or speech/language gap-getting your child to their same aged peers. Are reading decoding skills being mastered? How do you know this? An IEP should include ways for you and the teacher to objectively measure your child's progress or lack of progress (regression) in the special education program.

Data Based

Everything in an IEP is driven by DATA. This is important because it is how you and the team will know if the goal has been mastered or not. If you don’t understand how they will know this ask. Data is needed to know 1) where they are when compared to their peer group (same aged peers not grade level); 2) if they are making progress.  If your child is not learning and making progress – with progress measured objectively – the IEP should be revised.

The Meeting

Bring your ideas about goals and objectives. Don’t be afraid to speak up about what you think. All of the people at the table at your child's IEP meeting are going to have ideas about what your child should be learning in the upcoming year.  You have every right to speak up about the goals and objectives (and placement) they write into your child's IEP for the year, and schools will WANT to hear your thoughts and ideas.  If you don’t understand what’s being shared-TELL the team. The IEP team will do their best to schedule it when everyone can make it. This is many cases is before or after school. Please show up to your child's IEP meeting! It's important!

So first, your state code is thick, and you're never going to be able to read it all but take some time and read your parent rights and responsibilities BEFORE the meeting.  Ask your IEP team if you have questions about your rights.

All schools prepare a "draft copy" of your child's IEP. You have the right to see it before the meeting! Request a copy! This draft should ONLY include reports with data. Nothing else! Everything else is talked about at the meeting.  (As a special education teacher, I make changes right there during the meeting on my draft copy.) You also have input in classroom accommodations, modifications, and services.  As a Case Manager, I take the last couple of minutes before closing the meeting to summarize what was said, any changes and any agreements. I also tell parents that I will send home a “final” copy of the IEP within 7 business days. Why seven? This gives parents time to think about what was talked about and ask for a meeting to readdress something they forgot or to add or change pieces. Deadlines are different from state to state on when final copies have to be to parents-mine is 10 business days.

An IEP is NEVER final. It is a living document--that can be changed as any point in time by any member of the IEP team. This means three weeks after the meeting, a new one can be created or six months from the meeting. You don’t have to go a whole year with it. Your child’s success in the general education classroom in VERY important. if they aren’t making it-something needs change. Don’t be afraid to ask for a meeting if you think something isn’t working.

What is Least Restrictive Environment? (aka LRE)

The IEP team will recommend services in the least restrictive environment (LRE) appropriate to your child’s needs. This means that the team will consider how your child can be educated with children who do not have disabilities, to the maximum extent possible. If means that services can be provided in the general education classroom, pull out to a resource room, or to a center based placement.  Children fluidly move through their least restrictive environment depending on what they NEED to be successful. This can change throughout a year or your child’s education. As an example: they might start out with all the services being provided out of the classroom and as they master the skills move to services being provided both in and out of the classroom. Teams tend to be more conservative and services are provided outside of the class to start with so the student experience success verse being in the class and experience failure.

My name is Alison Whiteley. I write for Toad-ally Exceptional Learners Blog. Thanks so much to JCs Mom for having me guest blog. It’s been so much fun. The freebie has information on transition and ideas for what you can do to help get the school year off to a great start. If you would like to know more about me please visit my blog.

 

Link to freebie: https://docs.google.com/file/d/0B_h6TZs4mLsFdHVmSDdsd0hVbTg/edit?usp=sharing 

Our Fun Days of Summer

WEEK 1:

 

WEEK 2:

Make Something Monday:

Take a Trip Tuesday

Wet  n Wild Wednesday

Thinking Thursday (July 4th in a college town)

Fun Friday:

WEEK 3:

Make Something Monday

Take a Trip Tuesday

Wet n Wild Wednesday

Thinking Thursday

Fun Friday

Week 4:

Week 5:

Week 6:

Pinwheels: A lesson in Life

Pinwheels are a staple of childhood.  They are so simplistic in their design, but seem magical to a toddler.  JC was playing with a pinwheel last night, or at least trying to.  He knew that blowing on it should make it spin, but it wasn't quite working for him.  He couldn't get his mouth puckered the right way to blow a single stream of air.  His attempt was more like a heavy breath so the pinwheel wouldn't move.  He struggles with mouth movements (which is part of his issue with speech) and only recently successfully "puckered up" for a kiss :)

As the pinwheel sat lifeless, his frustration level started to rise so I sat beside him to help.  We both held the stem and we sat face to face with the pinwheel between us.  As he would blow his heavy breath, I would secretly blow a directed stream of air to make the pinwheel turn.  His eyes lit up with excitement!  Once again, he faltered the mouth position and tried his best to blow - as I blew and the pinwheel started to spin he squealed with delight.  This continued for quite some time and as I sat there I realized what an amazing moment this was.  It wasn't just playtime with a pinwheel, it was a moment when we were both acting as one.  I was replacing his breath with mine.  I was filling in the blanks where he wasn't able to do so.  I was providing a chance for him to succeed where he had previously failed.  It was an opportunity to show JC that even those things that frustrate him can be overcome... that by perservering through difficulties magical things can happen.  Maybe next time he picks up the pinwheel, I won't be right there using my breath to make it spin, and maybe he will again be frustrated that his efforts are in vain.  But then again, maybe he will remember that it CAN be done and he will keep trying.  At that moment, I felt that fleeting feeling that I was making the world easier for my little guy.  And I wished that every frustration could be eliminated that easily.  I would breathe every breath for him, to make his world easier.

Weekly Fun Schedules

Weekly Schedules for weeks filled with Play, Learning and FUN!

I will update more weeks soon!

Links to the actual Pinterest Projects:

Gum Drop Geometry

Water and Ice Play

Baking Soda Volcanos

 Balloon Ping Pong

 Links to the actual Pinterest Projects:

Marshmallow Catapult

Outdoor Shower

Fireworks in a Jar

Water Gun Target Practice

See more summer fun ideas  HERE