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Balancing Budgets on the Backs of the Most Vulnerable...Children with Autism

2011-08-12T21:06:01Z

Link to my latest article on PsychologyToday.com...

Balancing Budgets on the Backs of the Most Vulnerable...Children with Autism

As a parent of a child with autism, I am acutely aware of the fact that people who do not have a child with autism find it nearly impossible to understand the challenges our families face. In an effort to educate legislators, here are some factors that they may not understand.

http://www.psychologytoday.com/blog/autism-in-real-life/201108/balancing-budgets-the-backs-the-most-vulnerablechildren-autism

Grief a Year Later...Losing My Mother

2011-02-28T02:30:00Z

As the first anniversary of my mother's death approaches, I am left wondering why I am not feeling better. Not sure what I expected, but I just thought that “time” would really heal all wounds...like people were telling me. And here I am a year later, feeling, well, almost worse.

I know I am fortunate. I am blessed with 4 wonderful kids and an incredible husband. And I would be remiss if I didn't mention my loving yet still wild dog, Ace. I am lucky enough to have a sibling, my brother, who is a great person...devoting his life to the children he teaches in the inner city. My Dad, while hopelessly lost in grief himself, is loyal to his family and loves his grandchildren more than ever. While I do not have a large family, the Aunts, Uncles and cousins are dear to me as well.

Yet I am lost without my Mom. She is forever gone, and I can't seem to snap out of it.

I always knew the time would come when I would lose a parent. I guess I just never expected it to happen quickly. I always thought my kids would have my Mom in their lives just like I did. I should have known it could happen unexpectedly. I watched both my parents lose their parents. It was difficult but they seemed to move on with life rather quickly. But my parents weren't close with their parents. Not the way I was with my Mom.

My mother always made sure to tell me how much she loved me so I would always know. She said it was because her parents never told her they loved her. She wanted me to know every day that I was loved, without question. And with no doubt in my mind, I always felt loved by my parents, as a child, teenager and adult. To the day she died, I felt love.

My mother was my best friend. A confident. She was my cheerleader and life coach all rolled up into one incredible person. She was an Italian mama through and through. While she didn't grow up speaking Italian in the home, she later learned and often spoke to my kids in Italian. She learned to make homemade gnocchi from my Italian grandfather who made them for her. Her meatballs were the best I've ever tasted. Meatballs so good yet I haven't brought myself to make them since she died.

In her younger years, she was an excellent tennis player and loved the game until Rheumatoid Arthritis stole her bones making them too sore to play. But her gift of as an artist , no illness could ever steal. From my earliest memories, I remember watching her with her oils and canvas. She held art shows and painted pictures of us as kids and also of her grandchildren.

She was the kind of person who was a hard worker all her life. Even in retirement, she volunteered at the church, hospice and library. She raised money for autism walks and attended my son's endless doctors appointments. She support and accepted Tyler the way he was. She supported me in my grief over the diagnosis and the dark days that followed on our road to getting him better. That was who she was...a giving, loving grandmother who never wanted to leave her children or grandchildren.

A few months before she died, as she laid in the hospital bed, I begged her not to die...to please not leave us. I told her how much I loved her and how much I needed her. I told her I could not possibly imagine life without her in it. She said to me, “It might not be that bad.”
I cried, “But Mom, it was terrible for you when Nanny died, and you weren't even close.”
She replied, “Good point.”
But there was nothing else to say or do no matter what I wanted or she wanted. The doctors could do nothing. Praying hadn't worked. No miracle would come for her. After one tiring fight after another, she was accepting death. It was her time.

From the surgery to the chemo to her subsequent stroke, the cancer never relented. The only blessing was that she did not feel great pain as most cancer patients do. In the end, despite having volunteered in hospice myself, there was nothing beautiful or calm about her death. Surrounded by family in her home, my mother drew her last breath with her eyes wide open and teeth clenched. Her soul ripped from our world, and she was gone.

Only the shell of my Mom remained, and at that very moment, the fabric of my world and what I knew of the world forever changed. As I knew it would. I remember leaving the room, because I could not bear to see her body taken. My brother was shocked that my mother had just died on his birthday. Not so good for any of us really but I did feel badly for him. He was never much for celebrating his birthday, but this pretty much sealed the deal. And after the funeral, I awaited for the supposed closure. It didn't come. There was no closure...just emptiness.

Now as the anniversary draws near, I feel like I am approaching a year of emptiness without her. There was nothing good about her death. If I was looking for a “reason” for her suffering and death, there was none. No great revelations have occured.

It might sound bitter but over the past year, I have come to resent the saying, “There is a reason for everything.” Maybe that saying makes other people feel better about loss. Maybe it actually is true sometimes. But it isn't true all the time. One thing I know is that this experience has shaken my faith to its very core. Whatever God has planned for us or if there is a reason for her death, I will not know it while I walk this Earth.

If I learned anything from this experience, I suppose it solidified my position that there are things worse than autism. Yes, autism can be devastating to the child, parents and family. Yes, there is no denying the I felt grief over losing the child I thought my son was. But in the end, my son is here and relatively healthy albeit the autism.

I think I have also learned that sometimes grief does not go away. Sometimes it gets better. Sometimes it gets worse. In talking with my friend who lost her mother 7 years ago, she shared that it does sometimes feel worse. Maybe it feels worse because we miss the person so much and we know they are not coming back. Or in my case, every time something wonderful happens, I want to pick up the phone and call my Mom...but I can't. As I watch my beautiful daughter grow, I want desperately to share these precious moments with my Mom...yet I can't. I want her to see how Tyler has progressed. Want her to see him with friends...a miracle she will never see.

Some may say that my Mom is watching from above or where ever we go when we die. I want to believe. But maybe I am just not ready yet. Right now, she just feels gone.

So what about grief?...a year later? I still grieve the loss of my Mom everyday. Not a day goes by when I don't think of her. The loss is so raw, I still cannot bring myself to go through her things. But maybe someday it will get better...I have to hope. And like the autism I have grudgingly come to accept over the years.. Maybe the sense of loss is just something I will learn to accept as well.

With loss, there is no right or wrong way to feel. We are living and therefore, lucky to be able to feel anything. And at the end of the day, I am so very blessed to have had such an amazing mother who loved me. I am so very fortunate for what I do have...the people in my life who helped me start to put life back together the day after she died. My husband. My children. My dog. My family. My friends. I am so much more appreciative of their gifts.

Yes, a year has come and gone so quickly. So little has changed. So much has changed. But life goes on and so must I. Hopefully in years to come, the grief will ease. Time will heal. The memories and pictures won't hurt so much to look at...to share with my kids.

Hopefully, I can be as good of a mother to my children as she was to me. I need to gather my strength and dig out her recipes. Yes, it is time to teach my kids how to make homemade gnocchi and meatballs. A small step, but one I know she would want me to take....for me, for my kids and for her. Buon appetito!

Lo amo e mi manchi mamma.

Making Inclusion Work for Children with Autism

2010-02-28T21:19:00Z

Making Inclusion Work for Children with Autism
by Kym Grosso, MBA
www.AutismInRealLife.com

When inclusion is implemented correctly, it can help a child with autism improve social skills and learn to navigate the neurotypical (NT) world. The key words in this statement are “implemented correctly”. Too often children with autism are placed in a typical classroom with little to no support which can lead to a failure of the inclusion experience. In addition, many children with high functioning autism or aspergers, who are successfully included academic classes, are given no support socially. Many times schools only measure success by grades and place minimal importance on social skill development.

Over the years, I have fought long and hard for my son to have an inclusive education so that he can be socialized with his NT peers. Even though my son was severely affected by autism when he was younger, he still was able to be included in a NT preschool with supports. Today, my son is higher functioning, does well academically, but still struggles socially. My son does not have “typical” friendships the way NT kids do. But he does enjoy being with NT children and participates in many NT activities.

In talking with parents and advocates, inclusion experiences vary greatly from district to district and even within schools within a particular district. One school may offer great supports for both classroom inclusion and social skills, while another only offers only help in the classroom. It is not uncommon to hear a parent tell me that their child does well in school but spends every recess alone and does not know how to talk or play with friends.

School districts and parents may view inclusion differently. But the bottom line is that a child with autism needs to learn social thinking skills so he/she can be successful in life. Social skills are essential to employment and independence. These skills may take a lifetime to develop so it is critical that social skills are taught as part of the inclusion process.

As I reflected on my child's inclusive experiences in the public school system, I decided to document the elements that have made inclusion a positive experience. It is hoped parents, teachers and professionals will contribute to this list ,since it is by no means exhaustive. While every child with autism is different, there are some common areas for making inclusion work.

Individualize Inclusion to the Educational Setting
The need for social skills and inclusion can and should be reflected in the Individualized Education Plan (IEP). A child's IEP should explain in detail how the district is going to include the child in each educational setting throughout the day (e.g., math, reading, art, and music). Additionally, the IEP needs to state what supports, adaptations and/or Specially Designed Instructions (SDIs) are needed so the child can participate in the typical class in a meaningful way. If you do not close the loop and document in the IEP how inclusion is going to be supported, then you leave it open to the interpretation of any teacher at any given moment. That is unfair to the child and the teacher and may lead to the failure of inclusion.

Many times the IEP team will make the mistake of only including a child with autism in specials such as physical education, art, music, and recess. Further, the IEP team may assume a more restrictive learning environment, like a self-contained classroom, for academic subjects. The reality is that there should be no assumptions for where a child with autism should be included.

Inclusion in a special may or may not be a good choice for the child. Conversely, the team should not assume that a child cannot participate in a typical classroom for academic subjects. The IEP team should focus on how to make inclusion purposeful for the individual child and figure out what supports are necessary to make it happen. Only then can recommendations be made about “where” and “when” a child can be included.

For example, my son, who is high functioning, is included in academic subjects with supports/services, adaptations, and SDIs. However, he is not included for physical education (PE). Rather, he receives adaptive PE in a small group setting where he can better learn skills in a sensory friendly classroom. Because he is not required to take all specials, he opts out of Art but is fully included in Band. Also, considerations are given to other parts of his day such as lunch and after-school activities. Inclusion is spread throughout his day and is supported in a way that is relevant to him.

When looking at inclusion, parents and districts should not automatically decide a child cannot be included in the NT classroom, because the child is not performing on level. Depending on the child, correct adaptations, SDIs and “push-in” services, a child may thrive in the typical classroom. But it is essential that the IEP team contemplates and documents how inclusion will be supported in order to make it work.

Push-In Teaching or Therapy
Push-in teaching or therapy allows the special education teacher or therapist to physically come into the typical classroom to teach/co-teach the children with autism. The special education teacher may assist in teaching typical children so that the child with a disability is still learning with his/her typical peers.

As a parent, my initial concern with push-in was that it could further single out my child out as different. However, if done correctly, the push-in services can be done so that the teacher involves both children with autism and NT children. For example, a speech therapist could join the class during small group time to help the child with autism work on his/her goals for joining a group and engaging in conversation. The special education teacher could lead a small reading group so the child with autism is included in a reading group with NT children.

Parents need to ask how push-in services are being delivered. I would ask for examples. Because the concept of push-in services can be interpreted differently by schools and teachers, it is important to discuss and document the delivery of these services so that it does not draw attention to the child's disability. Push-in services, when implemented correctly, can positively supplement the inclusive experience.

Aide versus No Aide
I often hear the antiquated argument from school administrators that if a child needs an aide, he/she is actually in a more restrictive setting as opposed to the least restrictive environment (LRE). While this argument may save districts money for one-on-one aides, it is not true that inclusion in a typical classroom with an aide is more restrictive than a self contained classroom. First, a self-contained classroom does not provide a student the ability to learn with typical peers nor does it give the child a chance to develop typical peer supports and friendships. Secondly, the self-contained class can isolate children with disabilities from the rest of the school. Often the actual location of the classroom itself is isolated from other students not to mention restricting students from interacting with other kids.

Let me be clear in stating that full inclusion in a NT classroom may not work for every child with autism. There will be times when children with autism need a smaller, more restrictive learning environment, and that is perfectly acceptable. But my concern here is how school districts can spin this issue to make it seem like your child is in LRE in self contained class when they really are not. So if you are a parent who has a child who can participate in an inclusive setting with an aide, don't let the “aide is more restrictive” argument push your child out of the typical classroom.

Know your child. Do your research. If your child needs an one-on-one aide to receive a Free and Appropriate Public Education (FAPE) in the typical classroom, that is LRE, and the school district needs to provide it.

Positive Behavior Support
Schools will often use disruptive behavior as a reason for why a child cannot be successfully included in a NT school/classroom. Yes, it is true that behavior is often an issue for our kids, but appropriate management of the behaviors varies greatly from school to school as does the level of staff education regarding behavior management.

Positive Behavior Support can and does work to help reduce/eliminate undesired behaviors and increase desired behaviors. That being said, it has been my experience that many schools don't understand autism related behaviors at the granular level that is necessary to help children with autism. As a result, this lack of understanding can actually reinforce undesired behaviors.

If behavior is keeping your child from being included, it is critical that you request, in writing, a Functional Behavior Assessment (FBA) be completed by a board certified behavior analyst. Do not wait for the school to recommend the FBA because often they will not. The FBA should be done over a series of days in a variety of school settings to get an accurate picture of the child's behavior. The results of the FBA should not only detail behaviors but provide antecedents, recommendations and treatment plan goals. After the FBA is completed, a Positive Behavior Support Plan should be written into your child's IEP.

As follow-up, parents should insist that the behavior specialist be become part of the IEP team and be allowed to regularly observe the child. Personally, I have found it extremely effective to have my son's behavior specialist observe him weekly at school. She works with teachers and aides to make sure the behavior plan is appropriate and working. She also helps the school staff understand what data needs to be collected, how to collect it and analyzes it to make sure my son is making progress.

Positive Behavior Support Plans need to be specifically written into the IEP so the school is held accountable for correctly implementing the plans. Managing behavior is essential for successful inclusion.

Lunch
Lunch has been one of my “pet peeves” when it comes to my son's education. Inclusion does not mean forcing a child with autism to sit in a noisy cafeteria while he/she goes into sensory overload. I can't tell you how many times I heard a teacher or therapist tell me that my son did not talk to anyone during lunch except for himself, stimming. Some years, teachers would try to address the lunch situation. Other years, teachers were happy to let him sit and stim as long as he wasn't causing a problem during lunch. During elementary school, he actually spent an entire year eating in the special education teacher's room by himself. Could there have been a better option? Yes.

Currently, my son participates in both library club and chess club, both of which are held during lunch. So instead of sitting at the table not speaking to anyone, he has an inclusive, social opportunity during lunch in a classroom with other children.

Another inclusive lunch option would be for the special education teacher to offer a “lunch bunch” session in his/her room where the child with autism could bring a friend and eat in the classroom. Last year, my son did lunch bunch on a regular basis, and it really helped him to better get to know his NT peers in a small group setting. After lunch, the kids would play a game, and the teacher would have the kids fill out a question form to help facilitate communication between the kids.

As you can see, there are inclusive alternatives to sitting in a loud, crowded lunch room. Getting your school to offer any alternative may be a challenge, but knowing what to ask for is sometimes half the battle.

Friendships
A lack of age appropriate social skills is a hallmark of autism, and therefore, friendships for children with autism can be few and far between. It is often difficult for our kids to create and maintain friendships. While children with high functioning autism or aspergers may be able to meet academic demands, they frequently flounder in the social scene.

I am sure many parents would agree that most schools don't place enough value on creating and maintaining friendships. Today, with “No Child Left Behind”, teachers many times are forced to “teach to the test”. Unfortunately for kids with autism, the ability to have a friendship is of little interest to the government. Yet, many parents of children with autism are acutely aware that social skills are critical to the end goal of employment and independence. In addition, peer supports can greatly assist our children throughout their education years.

So how can a child's school help foster friendships? If creating and maintaining friendships is an issue for the child, the IEP team needs to discuss the need and create goals for helping a child with friendship. As previously mentioned, the teacher who created lunch bunch at our school helped my son enormously by helping him remember the names of his friends. It can be hard to make even one friend if you cannot even remember their name. As a result of lunch bunch, the typical kids were able to get to know my son and engage in structured play in a way that would not occur in busy classroom. Typical kids learn tolerance and acceptance for others via positive inclusion experience like this.

Another friendship builder is the “Best Buddies Program”. I understand from other parents that this is a great program that pairs a child with a disability with a NT child. My son's school is currently raising money to start the program. I am very excited that they are working so hard to get this program and would be very interested in hearing from other parents who have the program in their school.

Lastly, building friendships based on a shared interest is a goal for many kids with autism. Whether it is chess or band, kids with autism can have friendships that are based on the discussion of a specific topic. What can be difficult for our kids is getting them involved in an interest or activity. Both parents and schools can help to foster interests so that kids with autism can join in on typical activities. In the end, I do think parents have a greater influence on this outcome than schools because we are often the impetus for our kids taking up an interest.

As a parent, I have tried my best to expose my son to all kinds of interests, such as soccer, karate, drums, guitar and swimming. Some worked out, some not so much. Like a typical child, you sometimes never know what your child with autism will really be interested in or where they may excel. But our kids are capable of so many things if only given the chance. This is an area where parents can be instrumental in building interests so later the kids can use their knowledge of an interest to build a friendship.

Recess
Children are very social beings from the time they are born, and at school, recess is an important time for children to bond via game playing and fun. Even though recess may seem unorganized to adults, there are social rules and certain recess games that are regularly played. If you look at our kids on the playground, you might see them wandering around alone, stimming to themselves or awkwardly following other groups of children not knowing how to join. Children with autism need to be taught the social rules of recess and sometimes need to pre-learn common playground games so they can participate in recess with their typical peers.

While you may get lucky enough to get a caring teacher who teaches recess social skills and games, you may need to discuss your expectations for recess and include this in your child's IEP. For example, this might include having a goal for recess that your child will say hello to one child at recess or that your child will play a recess game such as “four square” with peers at least once a week. Whatever the goal is for your child, you may need to write these goals directly into your IEP to make it happen.

Activities
As a child gets older, social opportunities are more restricted to clubs or after-school activities. Many schools offer a diverse array of clubs, and it is surprising how well a child with autism can fit into these clubs and start making friends based on a shared interest.

Parents of children with autism need to proactively help their children select clubs and work with the school to make it happen. Children in the older grades are expected to join clubs on their own. So if you want your child to take up an after-school activity, you need to specifically ask about the clubs and be prepared to do follow-up during the year to make sure the club or activity is working well for your child.

I have been happily surprised by my son's desire to join after-school clubs. I had expected that he would like Video Game Design Club, and he really does likes it. He loves working on computers and is able to share and demonstrate this strength to typical peers.

Even more surprising was my son's participation in drama club. He explained to me they are not allowed to talk that much, so that alleviates the pressure of having to continuously interact. Yet there is enough interaction that he feels part of a group. I don't expect he will make friends the way a NT child would make friends, but he definitely has a sense of belonging, which is important. He is proud, as are we, that he is doing such a great job participating

The willingness of a school to include children with disabilities in activities is specific to that school and not necessarily specific to the school district. The school may say they will include your child but then make it difficult by not proactively looking for ways the child can be included. If your child is in middle or high school, the subject of activities should be discussed at the IEP meeting and documented in the IEP. How will the school make accommodations so that the child can participate? Does the child need an aide in order to participate? What clubs does the school offer and which clubs would the child like to join? As a parent, I would make sure to ask these questions in the beginning of the year, because it is unlikely the school will make this a priority without your involvement.

Creating an Inclusive Education Culture
Children with autism can thrive in a school that creates a culture which fully supports inclusion. This may be the most important aspect of inclusion yet the most difficult to accomplish. Nowadays, you will be hard pressed to find a teacher or administrator who will openly say they do not support inclusion. But does a school really embrace inclusion or are they only doing it in an attempt to comply with the IEP and provide FAPE?

Do the teachers read and use the SDIs listed in the IEP? Does the school support adaptations for individual children? Are teachers willing to be flexible and teach to the needs of the individual child? Does the school support teaching an alternative curriculum or making modifications to the curriculum? Does the school actively utilize Positive Behavioral Support Plans to modify behavior? The truth is that many schools don't say “yes” to these questions even if they are listed in an IEP. Often parents are in the position of pushing schools to do what is necessary to implement inclusion so that it is a meaningful and positive experience for the child.

In my experience, I have seen both ends of the spectrum. When my son first entered Kindergarten, I fought to have him included in a typical classroom. The Principal actually told me that she needed to “watch” my son for a few weeks in the self-contained autism support classroom to make sure his behaviors weren't disruptive. After explaining to her that my son was included in preschool, inclusion was in his IEP and that he would not start Kindergarten unless he was included, he was allowed to start Kindergarten in the NT class.

On the opposite end of the spectrum, there are schools that go above and beyond to make sure that the child is included. Currently, I honestly can say that the administration, special education teachers and regular teachers at my son's middle school look for ways to make inclusion work. They are flexible with homework and other SDIs in the IEP to make inclusion meaningful. They value social skills to the point that they have a 5 day a week, 45 minute social skills class. They support my son in after-school activities. A school wide culture exists that supports inclusion.

But what if your school does not support inclusion? How do you change the culture of a school? Culture is created top down and is championed throughout an organization. It needs to be rewarded and embraced by administrators, parents, teachers and students. Change is tough, but I strongly believe that parents can push inclusion by educating teachers, administrators and other parents. Talk to other parents and find out what they are doing to make inclusion work for their kids and use these as examples of what can be done at your school. If the administration pays lip service to inclusion, parents will need to strongly advocate for inclusion and regularly educate the principal and teacher what your expectations are for inclusion.

In order to affect cultural change, parents need to understand the Individuals with Disabilities Education Act (IDEA) and LRE, research their rights and be prepared to educate the team during your IEP meetings. It isn't always easy, but my son has been included since he was in preschool, behaviors and all, and the experience for him has been more than worth it. Today, when he navigates the NT world, whether he is at school, camp or the mall, he is better prepared because he was included.

Inclusion Versus Private School
As a parent of a child with autism, I would be remiss if I did not address the need for private school. There is no doubt that some districts may be unable or unwilling to provide FAPE. Therefore, some parents prefer a private educational setting for a their children because that is FAPE. If a private school is FAPE, then private school is what is best for the child.

There have been quite a few times during our journey with autism that I have considered private placement as well. Sometimes the fight is so difficult in the public school that you just feel like giving up and trying something else.

Every child with autism is different. As such, parents need to evaluate and weigh a variety of factors. Even if you strongly desire inclusion for your child, you may have to fight tooth and nail to make that inclusion meaningful. There are schools that don't get it. As long as the child can get by academically, the school will dig in and do nothing more, nothing less. If you are in that situation, you really need to ask what your child is getting out of what they call inclusion.

Positive, Meaningful Inclusion for Our Children
Now that my son is in middle school, I can say that despite the struggles with the district, inclusion with both typical peers and peers with autism has been the right direction for our son. When he gets older, I don't know if that will still be true. But for today, it is. Because of inclusion, my son is unafraid to go into new situations with NT children. There is no doubt that he gets that the NT world is different than the autism world. And while he clearly prefers his “autism friends”, he manages to make a NT friend here and there. It is hoped that he will keep both sets of friends because they are equally important.

In March, my son is going to be in a school musical, because he is comfortable enough around NT peers to participate. I am scared for him and happy for him at the same time. But there is no debating that because he is included, my son has a sense of belonging to a group. Yes, he still has autism, but he has a place in school. And someday maybe he will have autism but have a place at work.

In closing, I am very interested in getting comments from parents about what inclusion strategies are working at their schools. What does inclusion mean to you and your child?Sharing information about what is going “right” with our schools is just important as solving issues. Hopefully, this blog will help some parents who may be struggling with what inclusion means or how to improve it.

Meaningful inclusion can be a wonderful experience for a child with autism as well as their NT peers. Parents do need to be prepared to help with the process as some schools are better at implementing inclusion than others. Together we can bring inclusion to a new level so that our children are someday better prepared to navigate the NT world as adults.

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Letting Go

2010-01-04T05:25:00Z

I know this is an autism blog but today I write about my family and the lesson I can't seem to learn from cancer. I have never been good at letting go or giving up. I have always been a strong, persistent person who never takes no for an answer. I have conditioned myself through my experience with autism to just keep going no matter what and fight for my son. This is what I do.

I am not prepared, however, for what is happening to my mother. She is my best friend, my mother, my children's grandmother, my endless supporter. Even though she was diagnosed over 10 months ago, I still can't imagine life without her and have not come to terms with the fact she may die.

Since the warmth of summer, the light within my mom has withstood the storms of cancer. The seasons are lost on me since her first hospitalization occurred in October. Today, my mom's cancer has ravaged her body. She has been hospitalized more often than anyone cares to be yet she continues to fight. At this point, she barely eats or drinks. My father is consumed with grief and can rarely get through a sentence without crying. His lifelong partner lies in a hospital bed withering away while we all watch helplessly.

As I sit with my brother, I tell him that I hope tomorrow will be better. He and I both know that tomorrow may be different but not necessarily better. We cling to the things that bring us together like enjoying our dogs or watching a movie. And then tomorrow comes, and we continue watch the downward spiral of Mom's health.

Today, I call my Dad at the hospital, and he tearfully tells me how my mom does not have much time. They want her to go to hospice? I don't know what is real and what isn't. I don't want to go to the hospital anymore. I want to go to sleep and wake up and see if things are different tomorrow. I can't accept my mother's illness or her death. I can't let go.

I get angry with God for doing this to her. Why does cancer happen to good people? She is a good person. Can't he take someone else? Why her? Why now? I feel badly for being angry at God but sometimes this just happens. I was angry too about the autism and Ty. But over time, I accepted the autism and feel that maybe there is a reason why each one of us gets a child with autism. I try to help others touched by autism and hope that somehow I am giving back.

But my mother dying makes no sense to me. I can't see the good in this. I don't think I will ever understand why this is happening to her. Maybe that is God's point? Maybe we aren't supposed to know why? I don't know and I don't care. I just want her well. Maybe I just have to accept what is happening to my mom? That would be the rational thing to do, right?

But I am not feeling rational as I look down at my mother in the hospital bed. She is unable to speak clearly because of the strokes. She has been nauseous for months and is no longer really eating. She tells me she loves me as she always does. And I tell her that I love her and that she is such a great mom and friend. I tell her how much I still need her and I begin to sob at her side. This is the first time since the cancer I have visibly broken down in front of her. The gravity of the situation pushes me to share my emotions...I cannot hide my overwhelming sadness any longer.

Tomorrow I will re institute hiding grief as a pillar of strength is supposed to do. My family needs me strong. Even though my husband sees the grief through my smiles, my kids expect nothing less than the strong mom they know. I have to learn to accept this situation for them. I just can't do it today. I am not sure if I will ever truly accept the death of my mother.

In the meantime, I will be the cheerleader for my mom and my family. I will pray for my mom during the day's brief moments of silence. I will hug my husband and children and tell them I love them. I will write some more and wonder “why”. I will hope and keep faith for a miracle that I cannot see.

Life isn't Fair...Deal With It!

2009-09-04T15:59:00Z

by Kym Grosso, MBA

A new year is upon us and as usual, I am trying to get the school district to see things through the eyes of a parent of a child with autism. I really would just appreciate if for once school systems would stop and listen to parents. Really listen...don't pretend to listen. Don't talk at us like we are the children you teach. Don't tell us what the district is going to do or not going to do. Please just listen and try to imagine what it is like for us and our children for one minute.

Empathy and listening are valuable skills when two parties are attempting to communicate and collaborate. And while “collaboration” is a word thrown around in school district mission statements, I often wonder if anyone understands the what the word means.

I suppose if you don't have a child with autism, no matter how hard you try you won't completely understand what it is like. To be fair, some people do try and come close to understanding. And that is how it is in life with any employee in any business. There are employees who consistently go above and beyond. The customer is always right. Then you have the kind of employees who just coast right through the work day, oblivious to the customer, but causing no harm. Then there are “the ones”...the employees who just don't give a damn about what the customer thinks. It doesn't matter who is hurt because they just don't care.

That being said, I think the message I have been sent by my school district's transportation department is that they are on the “just don't give a damn” side. Perhaps I am being a little too harsh but that is how it feels. You see my son who has autism, has never taken the school district transportation in his life. With middle school upon us, I thought this would be a good time to start him riding the bus. But the district has decided the most efficient route is for my son to be the first one picked up in the morning and the last one dropped off, giving him the longest bus ride both ways. There are only 3 kids on the bus who live minutes from each other, but the district is so completely inflexible that they refuse to change the route. In addition, they are refusing to pick him up in the driveway even though they do the same for many other children with autism.

I tried talking with the transportation office, the teacher, the supervisor of special ed and most recently the superintendent who called me when he heard of the issue. Four days later and still no flexibility on their part to merely do the right thing and be fair. Yes, Mrs. Grosso, your son has the longest bus ride BOTH ways. No, Mrs. Grosso, we refuse to pick him up in the driveway even though we do it for the other students with autism. Yes, I know it isn't fair but too bad...life isn't fair...just deal with it. Really, just tell your son to also “just deal with it” because he is the one who will be affected.

You know, ever since my son's diagnosis, I am reminded on a daily basis that life is not fair. Most days I deal with it with grace and acceptance. And on other days, when I simply have had enough of the b#llsh$t, I make a conscious decision fight for my son. But sometimes, I run out of energy to fight over simple things when there just so many important problems to resolve.

So what do I do? Do I continue driving my son back and forth to school? Do I will fight more about the transportation in IEP meetings? Or do I rest and save my energy for another day? No matter what you do to communicate your perspective, people in the school systems will never understand what it is like for a child with autism let alone the parent of a child with autism. Some people don't care and will never even try.

As for me, maybe at the end of the week I will just sit here and be thankful for what I do have...maybe cry a little...then pick myself up again and keep fighting for my son when the more important battles come. Yes, life is not fair...I get it already. But I won't stop trying to level the playing field for the sake of my son or other children who have autism.

Seclusion Rooms & the Discrimination Against Children with Autism

2009-07-10T17:19:00Z

by Kym Grosso, MBA

The seclusion rooms in my son's elementary school have been dismantled. The so-called “quiet rooms” can no longer be used to isolate a child with autism against his will. The rooms have been walled over with pretty pictures, yet the scars from their use are still apparent on some of the children and parents. The victory is bittersweet as I fear that ignorance remains in the hearts and minds of those who used the rooms.

After seeing the rooms for myself, I cannot stop thinking about how people justify this practice in their minds and wonder how they sleep at night. I imagine a small child with autism being helplessly dragged into the room as he cries for his mother and father. He is confused, overstimulated and upset as he pleads to be let out of the room. Even though the doors are not locked, the adults who peer in at him are like prison guards. Should he try to leave, he may be forced back into the room. The child is forever afraid of the sight of the teacher and the seclusion room. The scars are permanent even though we cannot see them.

As a mother, I am overwhelmed with the instinct to protect my child from those in the school system. I find it hard to forgive the people who see nothing wrong with their actions. Considering the pervasive discrimination against children with disabilities, I should not be surprised that my son attended a school where someone thought a seclusion room was a good idea. My first “discrimination lesson” occurred when my health insurance company would not cover my son's OT services based on his autism diagnosis. Then, once he started school, I met the parents who did not want their child to play with my child because my son had autism.

But when we learned our son's elementary school built a seclusion room for the sole purpose of using it on children with autism, I did not jump to the conclusion that my son had been discriminated against, but he had. Only children with autism were exposed to the “dirty little secret room”, not the typical children. Only the children with autism saw their trusted teachers restraining one of their peers. Only the children with autism heard another child cry to be let out of a “room within a room”. Yes, the discrimination against my son with autism is not new but I cannot seem to shake the sadness of what happened to these children.

In the online news, I was struck by the many comments that supported the notion of locking children with autism in seclusion. Who are these people who feel it is best to put children with autism in empty cement block closets? Why does society feel it is acceptable to seclude and restrain children with autism but not typical children? I suspect that children with autism are often seen as less human, like wild animals perhaps. So in the minds of the ignorant, it becomes acceptable to discriminate and treat children with autism in an inhumane manner by secluding them.

The truth is that discrimination knows many faces. It can lie in the minds of teachers, principals, neighbors, family members and even the people who sit next to us in church. This “seclusion room” experience has awakened me to the fervent discrimination that exists against those with disabilities and the great intolerance of those with differences. Seclusion of children with autism is just another form of discrimination. And as usually happens, those who are prejudiced often do not think they discriminate.

Based on their discriminatory nature, seclusion rooms and restraints are usually reserved for the “autistic kids” not the “typical kids”. Adults would not restrain and seclude a typical tantrumming 5-year-old who threw themselves onto the floor, kicking and screaming. Most adults are aware that they if built a concrete, seclusion room in their home for their typical children, they would be arrested for child abuse. But build one in an elementary school for children with autism, you are good to go, and it is legal.

Even the current Pennsylvania education laws support the idea of discriminating via secluding children with autism in schools. Consequently, those schools who perpetrate the usage of seclusion rooms quote the law as gospel. They state the rooms are legal. No one asks what is ethically right. No one asks if seclusion is an evidenced based method for improving behavior. No one asks if the children will suffer psychological damage or post-traumatic stress after being secluded. The perpetrators even go as far to say “the children like it” or that they are “helping the children”. The line that irritates me the most is, “We did it for the child's safety”, which I doubt is the real reason they used the room.

So many times educators put a child in a seclusion room for “his safety” if he elopes out of a classroom. I would argue that eloping in itself is not a danger. It very much depends on the individual child and where the child is running. The child is not in danger by merely running to the nurse's office or special ed room. Now perhaps if the child tried to run out of the building every time he fled, that might be an issue. But again, where is the child running? To the playground to get away? Or out to a busy highway? Even then, what else has the school done to keep the child safe before resorting to a seclusion room?

In Pennsylvania, children with disabilities are supposed to be protected from the unnecessary use of restraints and seclusion by Chapter 14 education regulations. While Chapter 14 is a step in the right direction, it does not go far enough to protect children with disabilities from abuse. This regulation still allows schools to legally restrain and seclude children with little oversight or consequence. Chapter 14 states that seclusion should only be used as “a last resort”. In this context, the expression “last resort” means you have exhausted every other possible solution to a behavior issue. So then the question becomes, “Did the school really use the seclusion room as a last resort?” And can they prove it with untampered evidence such as videotapes, written documentation or independent witnesses?

Did the school implement an appropriate Positive Behavior Support Plan with input from ALL members of the IEP team, including the parents? If yes and it didn't work, why didn't it work? Is everyone who interacts with the child (parents, aides, teachers, bus driver, principal, etc.) aware of how they should or should not respond to the child's behavior? Was a valid Functional Behavior Assessment done by a Behavior Specialist prior to the use of the seclusion room? Did the school create a positive, safe, sensory room to where the child could run to instead of creating an empty seclusion room? Did the school assign a PCA to go with the child so they would not be in danger? Have the parents tried medications to help with the behavior? Could the child's current medication be contributing to his behavior? The list of questions goes on and on.

I honestly believe the use of seclusion rooms under Chapter 14 would be rare if schools truly used these rooms as “a last resort”. And even in those cases, I would not agree that an empty concrete room is in the best interest of any child. In fact, I would argue that this type of room is a cruel, inhumane way to treat a child no matter what the behavior. If a real “quiet room” is created for children, with soft seating/padding, and is presented in a calming, positive way with sensory items, it may provide comfort to the child. But this is not the type of room that is commonly seen in many public schools. The bottom line is that Chapter 14 does not go far enough to restrict schools from using and abusing seclusion and restraint.

Society's acceptance of seclusion rooms is borne out of ignorance about children with autism – plain and simple. Schools, behavior specialists and even parents need to help educate the educators so they have other options besides seclusion and restraint. Many educators express their frustration as “The children are simply out of control.” or “What else are we supposed to do?” Education is key to helping people understand behavior principles, behavior plans and how to successfully implement positive behavior practices in a school environment. This the only way we can achieve the elimination of seclusion and restraint. One one thing is for sure, behaviors associated with autism won't just go away on their own.

As we rely on legislators to fight for our children by introducing legislation to ban seclusion and restraint, parents need to be aware that the builders and users of seclusion rooms are going to fight hard to keep them. They will argue that they need seclusion rooms for our feral, autistic children who are simply “unsafe”. As others who have a prejudice, they either don't realize the discriminatory nature of seclusion rooms or they don't care. I am convinced that ignorance about autism and behavior management is the primary reason the administrators think they “need” the rooms. Whatever the reasons, expect the perpetrators and the schools who use these barbaric isolation cells to defend their use, because they will.

The face of discrimination is ignorance. No matter what the prejudices are, ignorance is the seed from which discrimination grows. When you don't have a child with autism, it is much easier to think of children with autism as less than human. No matter what you tell yourself, seclusion is not an ethical way to treat a child. If you are a school administrator or teacher who simply cannot accept life without seclusion and restraint and do not really want to use positive behavioral supports, you should find another line of work, because children with autism deserve better.

My son, and other children with autism, are entitled to the same respect and dignity we provide typical children. Autism does not negate his humanity nor does it exclude him from the emotional pain associated with seclusion and restraint. Seclusion in schools needs to be called out for what it really is. It is a degrading and inhumane way to treat a human being. It is discrimination in its most basic form, and it is time for it to end.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ My Great Web page

A Special Note to Parents of Children with Autism
Tonight, my son sleeps knowing he will not be restrained or put into a seclusion room against his will based upon his disability. But there are seclusion rooms at a local school near you where discrimination is waiting for your child. Seclusion rooms are peppered in districts all over the state. Find out what is happening in your school. What you don't know, could hurt your child. You may have consented to a seclusion room in your IEP and you don't even know it.

I encourage parents and professionals to write your state and federal legislators to ask them to end the abuse and discrimination against our children. As long as it is legal, you could wake up one day and find out your child has been restrained and secluded against his/her will.

www.AutismInRealLife.com

"Quiet Rooms"...What's the Problem?

2009-05-18T00:46:00Z

The term “Quiet Room” sounds so peaceful as it invokes thoughts of serenity. I guess that is why more and more school districts are pushing the terminology “Quiet Room” as opposed to “Seclusion Room” or “Timeout Room”. So what is the difference? Honestly, I am looking for some answers because I am not sure. Earlier this week, I spoke to someone from the state who told me that they are the exact same thing. She said “it was just terminology”. I have seen pictures of “quiet rooms” and “seclusion rooms”, and I don't quite understand the difference. So if anyone reading my blog knows where I can find the documented definitions, I would appreciate the help.

As a parent of a child with autism, I don't care what the room or area is called. The purpose is the same – to isolate a child with autism when he/she is having a meltdown after a teacher subjectively decides that the child is a threat to themselves or someone else. Parents should not fret, because it is legal to create a “quiet room” in a school? But wait, you don't like the idea? Let me tell you what I've learned in the past 2 weeks, and maybe you'll change your mind.

Apparently the rooms are legal as long as the physical space exceeds 28 square feet. So parents, do you feel better now? Do you like the idea of having a teacher or aide put your child in a “quiet room/area”? After all, the space exceeds 28 square feet. Sound good?

To put that in perspective, I measured the size of my small walk-in closet and it just about exceeds 28 square feet. So as long as the “quiet room” or “quiet area” is about the size of my closet, it may be legal. Feel better now?

Also, the rooms may be considered safe by the state even if the walls are made out of concrete block or sheet rock. In a split second, a child with autism could bang his head against the concrete in an effort to escape and be seriously injured. But I was told that it is legal to make a room with concrete block walls. So parents, are you warming up to the idea yet?

Here's another fact that should make you feel better. The rooms are not locked. Teachers can stand outside the door and look into observe. I am sure a 5 year old child is free to leave the room anytime they wish. Without a videotape of the entire situation, how would parents know what really happened? The answer is easy. Parents, you should just “trust” that the teachers and aides are fully trained, followed the law and did not block the door.

So you are not feeling comfortable yet? Well, if it is legal, it should be okay...What do I need to do to convince you that quiet rooms are in a child's best interest???

Well, if I can't convince you of this great idea, a district can always construe vague wording in your child's IEP to say that you gave consent to put your child in the room even if you did not know the room existed. The person I spoke to at the state said that in my son's IEP, the words “safe area” could be interpreted to mean that I gave consent to put my son in a “Quiet Room” or “Quiet Area” with a door.

So if you didn't like the idea of the quiet room, you might not even know that you consented. Nice huh? Hey parents, how are you feeling now about the peaceful “Quiet Room” now?

Still not loving it? Well, I am sure we could conjure up some school officials to tell you that the tantrumming child with autism actually likes being put in the room....concrete walls and all. Yep, the kids like being in a room with the door shut...getting that needed “alone time”. That will surely decrease behaviors, right?

Personally, I could see how a child with autism who craves a quiet place could find comfort in a small room where he could sit on soft chair/sofa and read and play with sensory items. But I guess empty quiet rooms are becoming “all the rage” in Behavior Management of kids with autism?

And what if your child happens to witness a child being restrained and being put kicking and screaming into one of these rooms in his classroom? How would the child be psychologically impacted? Would you as a parent be told that your child was exposed to the event? Possibly not. After talking to the contact at the state, she said the school has no obligation to tell me.

So why do I care about these rooms anyway? Why should you care? Two weeks ago, I found out that my son's typical elementary school, in beautiful Chester County, Pennsylvania, created 2 “quiet rooms/areas” (the name keeps changing). Apparently, the rooms were created months ago. Yet no one told parents until last week when we received the first letter. From the letters, it is clear to me that my district is very concerned about the “name” of these rooms/areas and they met the legal square footage. But is anyone asking parents or autism experts if we approve of these rooms for our children?

Sadly, these rooms are many times totally legal. I can tell you that I am NOT feeling better – no matter what the schools name the rooms or whether they are legal. As I dig deeper and deeper, I am sickened by the stories of these rooms at our school, and I am finding it hard to sleep. I hold in my tears as I hear stories of other districts using these rooms, and I cannot believe this is legal and so pervasive.

So here is the bottom line: Someone needs to stop asking what is legal, and start asking what is the moral and ethical way to treat our children with autism? It happens so often in life that something is legal but is just not right. Maybe it is because the voice of the vulnerable are too quiet to be heard. Maybe it is because we too often trust people to do the right thing on their own.

I am not naive and understand that some parents and clinicians/teachers have a true need for heavily padded rooms that are used with highly trained clinicians/teachers. I also understand that in these circumstances, parents are fully informed about the rooms and often the child finds comfort in being alone. Unfortunately, behaviors associated with autism can be very severe. I have also heard that when padded rooms are used in severe cases, they are used with reservation and caution.

But is this always the case when someone decides to create a “quiet room” at a typical elementary school? I would argue no. Districts across the country need to get serious about Best Practice Behavior Management and stop taking the easy way out with the use of these rooms. There ARE wonderful teachers out there who decry the use of such rooms, and successfully manage difficult behavior. Districts need to look to Board Certified Behavior Specialists to perform Functional Behavior Assessments and to drive the creation and implementation of Positive Behavior Support Plans.

Best Practice Behavior Management can and does work. My son is living proof. When he was younger, he often had severe behaviors such as tantrums, pinching, hitting, and eloping. Instead of being put in a “Quiet Room”, the teachers, TSS, parents and behavior specialist worked together to implement his behavior plan to reduce and eliminate behaviors. The behavior plan is not a quick fix nor is it easy to implement at times. Behavior can be exhausting for teachers and parents, but over time, my son's severe behaviors have been successfully eliminated.

So what can you do if you have not embraced the idea of “Quiet Rooms/Areas”? It is essential that parents and advocates be vocal about their opposition to these rooms. We need to change the state law to reduce and/or eliminate their creation and use. Start by calling and writing your state legislators (http://www.legis.state.pa.us/cfdocs/legis/home/find.cfm). Ask legislators for a bi-partisan investigation of the use of these rooms in school districts across Pennsylvania. Not only are our tax dollars being used to build these rooms, we are paying for the district's legal fees when they incur lawsuits.

Check your child's IEP behavior plan and crisis intervention plan. Make sure the wording in your child's IEP is very specific and does not leave room for interpretation about where your child will be placed when he/she is having a meltdown. If your child does require a quiet space, make sure there are specific time limits in your child's IEP and go look at the space. If you are not in agreement about the room, write a letter telling the school that you do not consent to the use of this room on your child. Contact an advocate and make sure your child's rights are being protected via his/her IEP.

Lastly, contact your federal representatives about this issue. On May 19th, the House Committee on Education and Labor is having a hearing to look at seclusion in schools. We must make our voices be heard so our children do not suffer in silence. Here is the link to find your congressperson:
https://writerep.house.gov/writerep/welcome.shtml A quick email is all it takes to share your views on this topic.

If you asked me 2 weeks ago what was happening at my son's school, the words “quiet room” would have never even entered my mind. If this can happen to me and the parents at my son's school, it CAN happen in your school district and in your child's school. Your school may already have a “quiet room” and you don't even know it.

As I write to you today, someone's child with autism is being put into a room in some school somewhere. There is a small, frightened child with autism crying inside a room that is technically “Legal”. It is time to put an end to this antiquated practice and stand up for our children's rights.

PS- If you feel like supporting us in our opposition to these rooms, please write Chester County legislators (http://www.legis.state.pa.us/cfdocs/legis/home/find.cfm) and tell them you oppose seclusion/time-out/quiet rooms. As parents, we would appreciate any assistance we can get educating our legislators and school officials.

Reflecting on the Important Things in Life

2009-04-17T19:16:00Z

While we all seem to know what is truly important in life, somehow we often manage to become bogged down in details like “who said what” or “who was supposed to do what”. These distractions often deter us from our family, priorities and for some, our faith. Like autism, cancer has a way of refocusing people. And like my son's autism, it has recently refocused our entire family.

In lieu of no major symptoms, my otherwise healthy mother was diagnosed with uterine cancer last month. Like autism, we knew it could happen in families but we still were surprised when cancer came knocking on our door. I felt that same sickening sense of devastation I did when I found out about my son yet in a different way.

My Mom is my rock in this chaotic world and has been the greatest Grandmother to both my children. She is my best friend. She has seen me during the best of times, like when we we've shopped till we dropped or when I married my husband Keith. She has seen me at my worst as I struggled to come to terms with my son's autism. And along the way, she never judged me.

She has raised money for autism research, gone to IEP meetings, and she been there for the birth of my children. While she lives a distance away, hardly a day goes by when we don't talk on the phone. I can't imagine life without her and more importantly, I really need her. My kids need her. My whole family needs her.

Being an autism mom, I know support groups are a wealth of knowledge. In my efforts to find the best doctor, I turned yet again to my autism support group. They are all such special people and always willing to help. Someone on the group, who I have never personally met, recommended one of the best surgeons in the area. Through the grace of God and a wonderful friend, Mom was able to get an appointment.

A week or so later, Mom had surgery to remove the cancer. Unfortunately, it spread so she needs chemotherapy. But like with autism, there are silver linings. Just like we are grateful for the little progress our children make, I was grateful the cancer had not spread to her lymph nodes. I try to remember all the things that are good and be thankful.

Like autism, uncertainty is palpable. Most times I shove those feelings aside and choose to be positive. It is hard to explain but I guess there is a healthy amount of denial happening that lets me refuse to accept anything less than a positive outcome. This may seem unrealistic to some people, but after autism, I have learned that anything is possible when it comes to our kids making progress. The doctor said that my Mom can survive the cancer. In my mind, there are no other options.

The possibility of losing my Mom is so painful ,and I just can't even think about it. I know I will lose my Mom someday. But I need her now. My kids need her and my Dad needs her and my whole family needs her. It sounds almost selfish as I write the words but the feelings are what they are. Most importantly, my Mom wants to be here, and she is ready for the fight. Her faith, family and friends will support her when she cannot support herself.

I know so many families are affected by autism and cancer or some other health crisis. I never thought there would be something as bad as autism but I was wrong. I guess I always knew that intellectually, but it is hard to remember sometimes when you are in the throws of life with autism. And just like autism, you sometimes don't notice cancer until it personally touches your family. When it does, you are connected to another group of families by another common thread – this time cancer.

I learned early in my journey with autism that even when I was having an issue with my son, there was always someone else who had a problem that was worse than mine. That is when I started feeling lucky. Lucky to have my son, autism or no autism.

And same with my Mom's cancer. We are lucky she has a great doctor. We are lucky that we have each other to lean on during this time. And I feel lucky to be reminded once again about what is really important in life. Sure, we could have gone with out the cancer to make us pay attention, but we are paying attention now.

In closing, I want to offer my prayers and thoughts to all of our families with autism and with cancer and with whatever other challenge your family is facing today. As I think of my challenges tonight, I am reminded of those silver linings and grateful that I am paying attention to what is important.

p.s. - If my mom reads this tonight, I want her to know how much I love her and how much she is needed in this world.

Little Miracles Bring Hope

2009-02-11T23:04:00Z

When my son was first diagnosed with autism, I was devastated with a sickening feeling that only a parent knows. Despite the diagnosing physician's cold words and depressing prognosis, I still had faith and a need for hope. What I really needed was to talk to another parent and hear that their child who had autism was making progress. I needed to hear that their child was happy. I needed to know that a child with autism could grow up and be included with typical children. I am not really sure what else I was looking for but I needed hope. You really need hope when things seem hopeless.

I admit that at first I was prey to the stories of "cures", and I was desperately looking for one. I prayed everyday for a miracle (and still do). Perhaps what I didn't realize at the time is that the miracles would come in the people who helped my son and the progress that he would make. Each and every word he spoke was a miracle. Every time he met a goal, it was a miracle. There were lots of miracles, small yes, but just as important as the big ones. I soon realized the importance of appreciating little things like my son saying "Mommy" or being able to dress himself. I also came to realize that just because my son had autism, he did not have to be defined by his disability. Most importantly, at some point, I realized it was okay to have hope for my child.

This month my son is turning 12. As his 12th birthday approaches, I am thankful for all the little miracles along the way. I think back to when he was first diagnosed at age 2 ½ when no words were present. I remember how he no longer looked in my eyes like he did when he was an infant. The tantrums were ever present, and the physician words of "mental retardation" and "autism" rang in my ears. In an effort to squash hope, the physician refused to listen to my insistence that my son was intelligent. Perhaps by instilling the thought that there was little hope for my son, she thought I would come to acceptance faster.

How I wish that physician could see the miracle before me today. My soon to be 12 year old who excels at math and other academics is yet again fighting to be in our world.. As I watch him tonight, he is beating his drum to the theme of "Star Wars", his favorite movie obsession. But he is not alone at home or self-talking to himself. Instead he is one of many children playing in a Honors Band.

While the autism hides behind his eyes, his spirit to succeed propels him forward even when he is bothered by the noise of the instruments. As he struggles to fit in to this new group of children, he covers his ears waiting for the practice to start. But he doesn't run. He doesn't yell. He patiently waits with his ears covered and fights for his basic need to belong.

I do wish that physician could see him tonight looking at the other children to see what he should be doing both on the drum and while he waits. It is the subtle things I notice like him copying another student who pushes himself up on the stage so he can sit while he waits. My son notices and follows as if he is part of the group. The six drummers sit patiently and wait for their turn to play. He is noticing the social rules of the other drummers and following along as if he has been playing with them for years. Another student high fives my son for a job well done after the number is completed. He happily interacts with another child while sharing a common joy. Yes, another small miracle.

To the other parents and children tonight, my son is just another special child. He is special because he is good at the drums and for no other reason. They don't see the autism or Aspergers or ADHD. And as I type, I am thanking God and so very grateful for this miracle that others around me don't see.

I wish I could videotape this simple band practice so that every physician could see my son. So the next time they give a diagnosis of autism, they can offer hope instead of despair. They could know of a child who once couldn't talk who now talks with others. If they knew my son, they would know that there are other kids with autism who are just like my son. There are children with autism who are struggling to fit into the world. And some, if just for a moment or an hour, are succeeding. Most importantly, they are happy and feeling what it is like to belong.

Yes, my son still has autism. Yes, life is still difficult for him and for us. Yes, there are battles to fight at every turn. My son's story to date is not one of recovery, but one of perseverance and hard work. Seeing him tonight in this elementary school gym, I am filled with hope at least for this hour. No thoughts of IEPs or ESY. I am just thankful for my son and for the little miracles.

In our dark moments, we sometimes need a short story of hope to bring us up into the sun again. A story to remind us that our children are capable of so many things. Capable of things you cannot even imagine.

I never thought I would be sitting here tonight on this dusty gym mat watching my child not just excel at something but actually "fit in" with a group. It may just be for an hour. But I'll happily take it. As I peer over my laptop, I see hope, not just for my son but for all our kids. Hope is only a drum beat away.

Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come.
~Anne Lamott

What Do You Want Schools & Teachers to Know about Autism?

2008-10-14T19:59:00Z

When my son was first diagnosed, I felt like no one could see the child that I saw in my son. He was so intelligent but no one seemed to see it. Maybe it is a parent's blind love or never ending hope, but I knew my son was special and not because he had autism. He is special because he is a smart, caring, loving little boy who deserves my infinite hope.

As the school year began, it made me think about what people, especially those at school, should know about autism and my son. Since my situation is not unique, I asked some autism moms what they wanted the schools and teachers to know about autism and their children. (Thanks to the smart autism parents who wrote me back!)

What we want schools and teachers to know about our kids with autism:

My son is NOT the diagnosis. He may have autism, but he is first and foremost a child. He is a child with needs and fears and likes and interests and a desire to succeed just like neurotypical children.
Remember to always look beyond the diagnosis and to see the beautiful, loving child that I see every day.
Learn my child’s strengths. Hear how he learns best from my perspective so you don't reinvent the wheel and can tweak it.
Understand my child’s weaknesses and what distracts him from learning.
Know that my child’s behavior improves most rapidly with praise and rewards, rather than reprimands.
I am looking at my son’s entire future not just this meeting. So when I scrutinize the details, I am not just trying to be difficult. I need to know that everything we do today will positively affect my son's long term outcome.
Don’t underestimate my son’s intelligence just because he has autism. He may learn differently but he does learn.
Just because my child does not know how to interact with other children, that does not mean he does not want to interact or care about friendship.
If you teach a child with Asperger’s Syndrome, please read Tony Atwood’s book: Aspergers Syndrome A Guide for Parents and Professionals.
There is no way that I could just name "One" thing that my son needs. He needs sooooo much, as they all do!

I am sure there are many other things that could be added to this list. What do you want schools and teachers to know about autism & your child? Join the blog and add a comment!

Thanks again to all the parents who helped me create this list!

A Matter of Trust

2008-09-04T01:52:00Z

Whether your child with autism is a toddler or a teenager, trusting another person with the future of your child can be very difficult. Ironically, “trusting” is the very thing parents with children of autism are asked to do over and over again.

So how interesting it was this week when someone flat out asked me to please just “trust them” with my son. Since this person happens to be a mom of a child with autism and is amazing when it comes to working with my son, trust was granted without hesitation. But on many occasions, I find myself holding trust as if it is the greatest treasure on earth. And perhaps, trust is just that, a gift, a treasure, something to be earned.

If you read my earlier blog, the beginning of the school year was a little rough. While I managed to resolve the issue, it took several days to get a reasonable explanation from administrators. Sadly, this situation could have been easily resolved if the administration understood the reasons for the class assignment and had a desire to communicate clearly. Thankfully, the teacher explained the situation in detail, and I really appreciated her taking time to communicate with me.

I was left questioning why it is so seemingly difficult for school administrators to communicate with parents. It is as if information is given only on a “need to know basis” as if I am in a secret government organization. But I am not. I am in a taxpayer funded school system where the salaries are paid by me, you and everyone else who lives in our community. So, what is the deal?

Giving administrators the benefit of the doubt, I would say it is ignorance on their part about the level of detail parents need about a given situation. Parents of children with autism like details. Administrators are generalists, looking at what is best for the whole school and are just not big on the details.

Sometimes when I ask questions or request information, I honestly get a sense that administrators surprised I am even asking. It is as if they can’t even comprehend why I would care about the details of a situation. Some administrators are just busy and barely have the time to call or email you with a response let alone give you details.

In real life, when I get “real” about why administrators sometimes don’t communicate well, I often sense arrogance during our conversations. There is great power in administrative positions, and they know it. And we all know what they say about “absolute power”. They are in charge of teachers and staff, and sometimes I think they believe the parents work for them too. So when I ask a question, I may get an authoritarian response as if to say, “Because I said so”. No real communication because they see no need. They are the “boss” so we should just fall in line and get with the program.

Luckily for the children, most parents of children with autism are strong moms and dads. We do not fall in line and accept vague answers. Rather, we tend to press for details until they are given with sufficient clarity. We have come too far with our children not to get honest answers to questions. When we do not get the information we require, the lack of communication is destined to create conflict.

Interestingly enough, I have found that most teachers do want to communicate with parents. Most teachers do care and understand why you need to know the details. Most teachers want to earn your trust with your children. My son has had extraordinary teachers throughout the years who communicated well and often. I will be forever grateful for their dedication to educating my child.

Perhaps teachers have learned something that administrators fail to learn. Effective communication goes a long way to build trust and also helps to avoid conflicts with parents. While I suspect “effective communication skills” is listed in the job requirements for administrators, I wonder if they ever do a self-check to make sure they are indeed communicating well.

Parents of children with autism know that we do not have room to make mistakes with our children. Given a negative learning experience, our children may not “bounce back” like a typical child. We know that one bad experience could set our children back so far they may not recover.

Therefore, as parents of children with autism, we are a bit stingy with our trust. Yet we are willing to give it to those who deserve and earn our “gift” of trust. Professionals and administrators must continually employ effective and honest communication to build, earn and keep parent trust. When this happens, the answer to the request, “Will you please trust me with your child?” is more likely to be a resounding, “Yes.”

Back to http://www.autisminreallife.com

Inclusion, Really?

2008-08-31T18:15:00Z

While some of us feel inclusion is the best thing since sliced bread, some of us hate it because it doesn't work. I was mostly on the "inclusion is great side", until recently.

Last Thursday, I attended my son's sneak-a-peek at his school. I was initially very excited because my son got a teacher who he already knew and she was a good teacher. Upon talking to the teacher, she mentioned that 3 children with autism, all of whom have aides, were assigned to her classroom. I could tell by the look on her face that she herself was surprised that 3 children with autism were assigned to her classroom when there are many other fifth grade classrooms. Yet she said nothing. How could she? She has no choice in the matter.

Upon talking to the special education teacher, I found out that they are trying some "new inclusion approach" - code word for "your son is going to be a guinea pig".    She said that she was going to be in the typical class teaching only our students, as if the other typical kids wouldn't notice.   When I raised concerns about the many distractions with all the aides, teachers, therapists, etc. in the classroom, she said that the aides were going to "switch" around with all the different kids- code word for "inconsistency". She added that we should remain "positive" - code word for "let's hope this works".

Needless to say, I left the school feeling confused about the new "approach" and thought perhaps "approach" was code for "we want to save money somehow".   I am not entirely sure of the motivation. But dollars and cents are often behind decisions, unfortunately not just "sense".

Perhaps the decision was driven by the Gaskin Settlement. If so, did anyone from the district read the article from the Pennsylvania State Education Association (PSEA) that discusses misapplications of the settlement? (see http://www.psea.org/article.cfm?SID=838). This article specifically mentions a particular misapplication of the settlement: "In some cases regular education classes are being overloaded with IEP students well beyond natural representation."

I can't be sure of why this new approach is being pushed so hard in my district, but I do know one thing. My son actually regressed in reading comprehension last year when my district allowed a substitute special ed teacher stay on despite many parent complaints about his competency. Like it or not, these actions or lack thereof, created a track record.

Now, this same district is implementing a controversial approach to inclusion by segregating the children with autism into one typical classroom and calling it inclusion. Really, this is inclusion? They are literally taking a cluster of children with a disability and putting them into one classroom with typical children.   No one has asked for my opinion or what I think is best for my child. No one has asked for the opinion of the parents of all the typical children in the classroom. No one has provided the parents with any data or studies indicating this new approach is going to work or is of any value.   No communication whatsoever.

Will the distractions far outweigh any benefit gleaned from remaining in a typical classroom for more hours in the week? How will my son get individual reading comprehension attention when there are so many distractions in the class? Will he be able to focus? Who will be in the special education classroom if he needs to go down there for special help or to take tests during the day if the special ed teacher is now in the regular classroom? Are they going to make all the kids with autism sit together in the typical class so they can teach them as a group like they do in the special education room? Are our kids going to be "outed" when this happens? Too many questions, not many answers. What I see is that the district wants my son and others to be "guinea pigs" for their inclusion experiment.

So as you can imagine, I am not remaining "positive" - code word for "my son is NOT going to be a guinea pig". My son did very well last year as the single student with autism in a typical class because the amount of distractions was very low, the new special ed teacher was terrific and worked great with the regular ed teacher, and most importantly, the regular ed teacher was highly structured and also a great teacher. Pretty simple formula to make inclusion work well.

While I am not old fashion in any sense of the word, there is great truth to some old sayings. "When it ain't broke, don't fix it". Well, maybe the system wasn't perfect, but it wasn't broken either. At least my son wasn't someone's guinea pig.

As I continue on my journey, I am learning that inclusion, implemented correctly, is best for my son.  The key phrase being, "implemented correctly". So I still am a fan of inclusion but I will have to be diligent in my quest to have it implemented correctly.

As I fight my next battle for my son, I knew it would come. If you are a parent of a child with autism, you know it will come even though you may have no idea what it will be about or the form it will take. It is the nature of the beast, so to speak. Thinking positive is important but that does not mean you forgo advocating for your child. By the time I blog again, I am hoping to report a positive outcome on this situation.

Good luck to all as your children begin the new school year. Thinking positive. Advocating positively!

Welcome

2008-08-30T07:30:48Z

Welcome to my blog. Please check back soon for new entries.