Balancing Budgets on the Backs of the Most Vulnerable...Children with Autism
Link to my latest article on PsychologyToday.com...
Balancing Budgets on the Backs of the Most Vulnerable...Children with Autism
Grief a Year Later...Losing My Mother
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
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.
Letting Go
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!
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.
