It is IEP season in our home. We have meetings, conferences and Functional Behavioral Assessments. This is a stressful season for me. Today, I saw this on Facebook. I think I will be using this technique to deal with the frustrating and occasionally illogical aspects of the IEP:
I just read Schizophrenia Revealed: Accepting Uncle Leopold at “A Quiet Week in the House”. It is a bittersweet and uplifting story. It is beautifully written. As the daughter of a paranoid schizophrenic (my father) and the mother of an Aspie, it was particularly poignant. It reminds us that “You can accept them as beautiful and whole people. Isn’t this what any person, regardless of circumstance wants?”
A timely reminder for me.
Recently, the mother of 23-year old Paul Corby received a letter from the Hospital at the University of Pennsylvania’s transplant team. Her son has a congenital heart disorder which leaves his heart unable to pump blood as efficiently as required. The family had hoped to have his name added to the wait list for a new heart. Instead the letter stated, “I have recommended against transplant given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior.”
Yes. Paul Corby has autism. He also has an unspecified mood disorder for which he takes medication. He lives at home with his family, plays video games, has written on self-published novel and is working on a sequel. He is aware of the lengthy hospital stay and other stresses associated with a transplant and states that he is ready to participate in his post-surgery recovery. Most of the 19 medications he takes are associated with his heart disorder.
I see this as the dangerous side of defining Autism as a mental illness. Discoveries in neurology and regarding the human mind has given us the ability to more precisely describe the neurodiversity that surrounds us. These more precise descriptions allow us to link more and more behaviors to specific syndromes. While that gives us the ability to provide the individuals and families with tools and therapies, it also expands the population currently defined as “mentally ill”. Eventually we will find that nearly everyone could be defined as “mentally ill”. Using mental illness as a criteria to exclude individuals from other life-saving procedures has become untenable. We need to find an alternate way of distinguishing between a true illness and neuro-diversity.
Do you think we need to change the stigma surrounding mental illness, redefine some mental illness as neuro-diversity, or some combination of both?
“I am not bound to win, but I am bound to be true. I am not bound to succeed, but I am bound to live up to what light I have.” – Abraham Lincoln
I have always viewed integrity as an ideal. Lately, it has been dawning on me that integrity is actually my life line in parenting my teenage Aspie.
“I think that I actually just hate you,” my Aspie Son informed me the other night, “I get along fine with everyone else and when I was at Dad’s house, I did the work he asked me to do with ease but when it is you, I feel so angry. So, I think it is just that I hate you.”
“Well, I think that makes sense,” I replied, “When you visit Dad’s house, it is for a short time and there is a lot of emphasis on you having fun. With me, there is a lot more working on life. I am the one who works with you through school and a lot of the life lessons so I can see how I could be the one that triggers irritation.”
“Well, I don’t know because Dad talked to me about life but I didn’t get angry. I think it really is that I just hate you!” he concluded.
I took a deep breath and remained silent. I realized that engaging in this a conversation when he is in this kind of space is not helpful. However, the conversation does continue later when he is doing the dishes.
I was walking toward the kitchen and my Aspie Son popped out.
“What do you want?” he demanded.
“I wanted to get a glass of water,” I explained, “Is everything ok?”
“See, that is what I mean. I think I just hate you because just you saying that makes me SO angry!” he replied.
“Well, that is too bad because I love you and there is a lot about you that I actually like,” I explained.
“Well! How do you think I feel? Hating my own mother! But if I didn’t tell you, I would be living in denial!” He emphasized the last part of this with a dramatic turn back into the kitchen.
I nearly burst out laughing at the ridiculousness of this last display. I was thankful for this gut response. The earlier conversation had me feeling sad and discouraged. My Aspie Son’s bluntly honest responses to everything are sometimes harsh and painful.
Being a parent to a typical child is difficult. There is uncertainty, guilt about mistakes and fear of making the wrong decision. The same struggles exist when parenting a child with special needs. These struggles are often magnified and there is a unique lack of payback. There is little reciprocation from the child and often my child’s frustration is poured out on me. Additionally, the outside world rarely gives recognition of the hard work being done every day. Quite the opposite, there is judgement, shock, and a drawing back when my child’s behavior is outrageous and socially unacceptable.
How do I keep my perspective and persistence in these situations? Truth be told, I don’t always keep my perspective. When I do, it is because I choose my motivation. I do not chose to act in order to receive praise or recognition from others. My choices cannot be motivated with a hope that my son will be pleased with me or even acknowledge me.
I must make my decisions, take my actions and draw my motivation from inside of myself, from who I want to be. I do what I do because of the parent I want to be. I will know when I lay down at night or when I look at my face in the mirror in the morning that I have done what I believed was right and best. Integrity is my life line.
“I prefer to be true to myself, even at the hazard of incurring the ridicule of others, rather than to be false, and to incur my own abhorrence.” – Frederick Douglass
Even in the NT world, teenagers are famous for having a self-centered perspective. I am sure there are plenty of NT teens out there who view their parents as hypocritical, selfish, or even lazy. Teenagers are not known for the ability to have a big-picture perspective and tend to over-exaggerate most everything. Having an Aspie teen means all the same things as a NT teen but with less filters, less stops, rigidity and the irresistible need to express a thought to its completion even when they know they shouldn’t.
As the parent, I have found this to be intensely emotional and draining. Some aspects of raising my son are very similar to raising a young child with the physicality and experiential understanding of a young man.
My lesson is to know when to disengage and just let my son be who he is right now. Occasionally, I find moments when he will listen. I even find moments when I can get him to acknowledge that I might have a different perspective than he does. On a really good day, he may go as far as to acknowledge that my perspective might have some validity, if for no other reason then it is my perspective. However, none of these moments will happen at a moment of confrontation.
There are days when I will spend hours working only to stop working and start cleaning, cooking and doing laundry. My son will walk into the kitchen after 5 hours of free-time, make toast, leave a mess behind. His response to my request to clean up after himself is a simple, “No.” Further discussion will lead to a rant about how my expectations of him are SO unjust. Giving him a consequence for outright refusal would lead to a meltdown. Waiting and re-engaging him later will often result in not only compliance but frequently a learning moment for both of us.
Each aspie is as different as each NT teen. Some things about this stage are just teenage issues. When my Aspie Son is confronted by a mistake or situational stress, his first line of ego defense is to blame me. Sometimes, the process he goes through to blame me is so ridiculous that I laugh. Sometimes the criticism hits upon enough small truth to make me feel defensive. Packing for a recent trip was a perfect example.
The evening before he was to leave, he came downstairs as I was making dinner. I reminded him that I would be taking him to the airport the next day. Speaking mostly to myself, but unfortunately out loud, I said, “That’s right. I need to get you a suitcase.”
“Where is the suitcase?” my son asked.
“In the shed.”
“Ok,” he replied and stood there obviously waiting for me to get it.
“I am not going to get it right now,” I informed him.
“Why not!?” he asked incredulously.
“Because there is a storm blowing through and I am making dinner.”
“Fine! I will do it!” he decided.
He walked to the back door, watched the rain and wind for a minute and turned back.
“I can wait.” he said, changing his mind.
The next morning, I woke him at the break of dawn – better known as 9 am. I reminded him that we would be leaving in 4 and a half hours and he needed to pack. As I was getting ready to take my younger daughters to swim practice, he came downstairs.
“Mom! I need a suitcase!” he informed me.
“That is right,” I replied, picking up my keys to leave, ” you can get one from the shed.”
“But you said you would get it for me!” he stated exasperated.
“I can’t right now,” I started.
“Ass!” he spat at me, “You said you would get me a suitcase last night.”
My first instinct was to be defensive. He was right – technically. I did say I would get him suitcase. The defensive reaction inside me, made me feel angry. He is 15 years old. He should be handling this on his own. He does nothing with his days but sleep in and play video games. His 12 year old brother made sure his clothes were washed and packed days in advance of his trip.
I made myself stop.
“I have to take the girls to swim. I will be back in a while.” I called out as I walked out the door.
Upon returning, I went upstairs.
“Daniel, do you still need a suitcase?” I asked.
“Yes,” he replied.
“You are right that I said that I would get a suitcase for you. I should not have said that. I apologize. I was mommy-ing you and you are 15. You can do those kinds of things for yourself.”
“I know,” he quietly acknowledged, “I shouldn’t even have to ask you. I am sorry.”
I was floored.
“I just want to make sure that I get a suitcase I can carry on and not have to check,” he confided to me.
I realized that he was stressed about choosing the right suitcase. His way of dealing with that stress was to latch on to the lifeline of “Mom said she would do it”. When I informed him that I expected him to do it, his defensive mechanism kicked in.
When my Aspie Son’s defenses are so ridiculous that I laugh, it is easier on me. However, the aspie in me feels compelled to deal with the situation right then and get him to see/admit the error of his thinking. That is terribly overwhelming to my son. Some of our biggest blow ups occur in those moments.
When his defensiveness trigger a feeling of defensiveness in me, it often works out better. I have been learning that the defensive feeling inside me is a sign to back off and take some time. We both have time to consider our responses. Coming back later often leads to a better understanding of what my Aspie Son is really thinking or feeling.
Driving my son to the airport yesterday, my Aspie Son became cruelly defensive several times. However, each time, I was able to see that he was simply covering stress regarding the process he was trying to navigate. Seeing the real issue helped me. I didn’t take his insults as personally and I was able to work on addressing the core issue – even in a time crunch.
I now have two weeks to catch my breath before he returns and we start again. I hope I will be able to hold on to this lesson with the confidence that I feel right now.
A week ago, I had a very painful and difficult interaction with my teen-age, Aspie Son over the ordinary chore of putting away the washed dishes. This escalated quicker than normal into a rather violent outburst. He screamed unkind and terribly disrespectful things in my face, then turned to stomp around the kitchen screaming and pounding his fist on the counter-tops. It felt as though all of his frustrations in life poured out over me and our kitchen.
While I wouldn’t say this is a usual occurrence, it is also not unusual. It frightened my two younger daughters, ages 5 and 6. It upset his 12 NT brother, The Bear. Afterwards, The Bear asked me, “Do you ever regret having Daniel?”
Yesterday, the following statement was made on a Facebook Group Page of which I am a memeber:
“I met a mum recently who told me she “hated” her son with asperger’s. To me, I was very sad for him and for her…her hating her own kid – of course that’s wrong and horrible – but I wonder how many parents out there do feel that way.”
There is a dark side to raising a child with these challenges. My son’s honest expressions can be downright mean. He will say that I am lazy. He will say that I don’t ever do anything. He will say that I am selfish or a hypocrite. Of course, he is a teenager and I am sure from his narrow perspective what he says is truth.
Meltdowns are more frequent now than in the past. The physicality associated with his meltdowns now reminds me of when he was 3, more than when he was 10. These meltdowns are more disturbing and scary in the body of a 5’11” young man than they were in a small child. The glimmers of the sweet boy I remember are few and far between.
There are a lot of aspects of life that we as humans do not include in the stories we pass down. We don’t talk about the messier and darker aspects of common life occurrences. A great example is our tendency to remain silent on the terrifying nature of postpartum depression and psychosis. We don’t want to admit that even the most joyful parts of life can come with a dark lining.
As a parent of an Apsie child, I live in a strange world. Strangers do not understand and even from friends and family there can be a lot of judgement. I have been told that I am not consistent enough with my son. I have been told that I am not disciplined enough. Even when there is no overt comment, there is the change in body language, tone of voice and the distancing by people who are affronted by my son.
On the other hand, my son judges me as inadequate, unfair, lazy and hypocritical. He expresses hatred for the help that I sacrifice to give him. I stand in the middle making the decisions as best I know how. This is an emotionally draining position.
My NT son sees all of this and so he asks if I regret having my Aspie Son.
“No!” I responded without hesitation, “Raising [my Aspie Son] is challenging and there are times that he can be such a jerk but I have learned so much about myself and life through this process. I have learned to look beyond the external and set aside a lot of my preconceived judgements. I have learned to make my decisions based on who I am and who I want to be, not based on what that decision will get from others in the way of approval, acceptance, etc. It has made me so much stronger. I am proud of the person I have become and if this is the road that it took to become this person, well that is fine. I love him because he is my son, not because of what he can give me and I believe that he is an amazing person traveling his own tough road.”
That statement reflects the decision I have made. I don’t always feel the feelings that would inspire that statement therefore I don’t despise the mother that said she hated her son. I am thankful that my NT son didn’t ask me 20 minutes earlier. I don’t know that I would have regained my balance enough to answer the way I did. Just because I don’t act on the dark moments doesn’t mean they don’t exist.
Do you ever feel dark moments? Do you have a safe person you can confide in? How do you regain your balance in those moments?
As a parent to an atypical child, I find myself spending a large part of life living in the future or the past. I come by it honestly. Having a child that will respond to life atypically or have unique challenges in school and other situations, I have learned to anticipate. I run scenarios of how a situation could go. I plan for as many possible contingencies as I can imagine. Conversely, I am always looking at the past for pointers to where a situation is going or comparing to find signs of development.
After living this way for so long, I had become fairly adept at handling life this way. I had reached a point where I felt able to adjust and handle most of what life with my Aspie-son would throw at me. Then we hit the teen years.
As my Aspie-son’s hormones raged, every aspect of life intensified. I reacted by amping up my planning/comparing coping mechanisms. I became hyper-vigilant. I became trapped.
My family as a whole started to suffer. My Aspie-son, my husband, my other typical children and finally, I began to suffer. I was being swallowed whole trying to plan, be or do enough to stay in control and guarantee success. Life was miserable.
I arrived at my younger daughter’s kindergarten class to volunteer. My mind and heart were not present. I spent the whole time moving through the motions but truly, I was in my head trying to figure out a way to help my Aspie-son pass 8th grade. Not only was my coping mechanisms not working for my son, but I had taken up permanent residence in the mental world of the future and the past. I was no longer present for the life that was happening now.
When I started to think about parenting my child toward purpose, my perspective and my interactions with everyone around me changed. I have recognized that my life is now. The present moment is my focus. I see the need to live in the present moment because this moment is all I really have.
I still plan. My focus has changed. Instead of living in the future I make plans then focus on honoring and giving my fullest attention to the step, the moment that I am in right now. This shift has brought balance to my life. For me, learning this focus took three main shifts:
Letting Go
I had grand ideas of what our storyline was going to be. Living in dreams of a successful future was an escape from the current struggles. Those dreams were so alluring. Sometimes, that vision would inspire me to continue but more often, that same vision was like Turkish Delight in The Lion, the Witch and the Wardrobe. It made the present moment pale and tasteless. I endured now with the hope of a better tomorrow but tomorrow never came.
Focusing on this moment, I have again found joy. When I let go of what tomorrow could be, I see the successes, precious interactions and joyful moments right now. The journey has become the focus, not an illusionary destination.
Accepting My Limitations
My Aspie-son is mismatched to the world we live in. It seemed that My son is the round peg to the outside world’s square hole. I thought I was accepting this fact.
I have realized that I my acceptance was conditional on a belief that I could fill in the gaps between the outside expectation and my son’s reality. I believed I could make the world accept my son and acknowledge his successes. I had a distorted perception of who I needed to be in my son’s life.
I can never do or be enough to make my son and the typical world’s expectations mesh. Accepting my limitations, opened a new path. Instead of seeing the world as rigid, I saw flexibility. As I expanded my view beyond the world of the public school structure, I could see the endless variations that our world allows. My role is to guide my son as he creates his path in this world and finds his purpose.
Balance
My Aspie-son is an important part of my life, but he is not my whole life. I did not cease to exist when he was born. Additionally, there are other small lives in my care. The loudest need cannot drown out the other needs. My son and my typical children learn from how I live. How can I tell my Aspie-son that I believe that he can be an independent adult and then do everything for him?
When I give my focus to the moment at hand, I honor all the parts of my life. My time with my husband is for him alone. My time with each of my children is sacred and preserved. The time I set aside for caring for myself is spent doing ONLY that. This is a practice I have yet to perfect but the practice alone has increased my self-awareness and increase the balance between the various aspects of my life.
Unexpected Development
My Aspie-son came to me the other day and told me that he wants to start doing his own laundry. He thinks that would be a good step toward self-sufficiency. In the past he was required to do his own laundry because I thought it was important that he know how to do laundry. However, recently and in the interest of saving on the number of loads, I have put his laundry in with ours. I was surprised that he wanted to take on a “chore” Starting this week, I will be giving him some laundry room time to do his own laundry.
What is your biggest challenge to finding balance in raising your Aspie child?
Yesterday I was getting ready for my daughter’s 5-year-old birthday party. I had purchased two boxes of cake mix in some masochistic idea of making her birthday cake. I had sliced strawberries and made chocolate frosting. The first layer of the cake came out perfectly. I let it cool, frosted the top and added the strawberry slices while the second layer baked and cooled. Then everything went pear-shaped. The second layer fell to pieces as I tried to take it out of the pan.
Frustrated, I tried to find my keys. My husband expressed amazement that I had tried at all to make a cake on the day of the party. I was nearly in tears. I am not sure what made the whole thing so emotional but I was a mess when my Aspie-son walked into the kitchen.
Usually in these situations, my Aspie-son says something along the lines of, “Well, I guess you just have days like this and you need to be able to go forward and make the best of it!”
This is frustrating in the extreme and so like me. I headed for the door, hoping to avoid hearing my voice coming out of my son.
Instead, my Aspie-son walked up to me, put his arm around me. Walking out to the car with me he said, “I know you are just trying to make the best birthday for your daughter and this is very frustrating. Don’t worry. You are a wonderful mom. You are doing such a great job. Little Lou will love her party. You are a great mom!”
I got in the car and started to cry. I wasn’t crying because of the frustration though. I was crying to see the tiny twinkle of my son’s sweet side. It is a side I don’t get to see very often right now. Knowing that it still exists was like a drink of water in the middle of the desert.
I have a confession to make, I sometimes read the end of a book if it gets too intense. I don’t read enough to completely ruin the story, but just enough to know if the character I am invested in makes it. I don’t handle unknown very well.
The unknown is one of the hardest parts of being a parent, for me. I don’t know how our story ends.
“Don’t forget you have homework to finish before you go to bed tonight or you will not have your electronics tomorrow after school,” I remind my Aspie-son.
“Uh-huh,” he grunts from his bed. His headphones are on and his eyes never move from the screen.
This is the 5th time I have reminded him. I don’t want to deal with his emotions and frustration at the consequences if he doesn’t get the work done so I remind him, again, and again and again. I am officially the nagging mother. This is not working for me.
My Aspie-son is 15 now. We are at a new stage. The stage where I need to give him space to practice with the tools we have given him, the space to succeed… or fail as he makes these tools his own. However, I find that I.CAN.NOT.STOP trying to make it work for my son. It is a case of reverse learned helplessness.
This transition is as much about me as it is about him. The only way I can protect completely is to control completely. As I give up some control, I am conscious of the risks. What if he fails 8th grade? He will be a 16 year old in 8th grade and 20 if he makes it to high school graduation. There is a ticker tape of “Worry Headlines” running through my head.
I am fortunate to have an independent son. He does NOT want me to do it for him. He rebels against my “mommy-ing” him. He will chose to not do something for no other reason than because I said it should be done. As a result, my protective/controlling is completely ineffective.
I have two options right now:
Continue to be protectively controlling. My son will continue to find this demeaning and rebel against it. Nothing will get done. War will ensue in my home and failure is guaranteed.
Give him space to succeed or fail. I can take a chance. I can step back. This means dealing with my own fears. There is no racing ahead to the ending to make sure it turns out ok. Instead, I must live in this moment. I must learn to be calm inside myself despite knowing all the risks. I can learn that life will go on and life can and will be good. I can learn to chose my response instead of reacting to my fears… even if my Aspie-son fails 8th grade.
My keys to success:
Stay in in the moment.
I can plan for the future and remember the past but I must not live in either place. I must live today. I must not live in reaction to past hurts or future fears.
I do not ignore patterns of behavior that can point to understanding a current situation but I understand past hurts make the weight of events disproportionately heavy. It isn’t the fact that the bread was left out and is stale. It is the fact that I have already thrown away 3 loaves of completely stale bread this week and the two younger girls will not have any bread to make their lunch unless I run to the store AGAIN. The emotion of the situation makes it difficult to choose my response.
I plan for the future but if I live reacting to the projected “Worry Headlines” the fear overwhelms me and I grip more tightly at my illusion of control.
Each moment, I must make my choice to respond and I can only choose my response if I am in that moment and paying attention to what is at play right now.
Big Picture.
In each moment, I must keep my perspective wide. If I widen my view, I can see that failing 8th grade is not the end of the world. One of the authors of Learning Outside the Lines, David Cohen had struggles with learning disabilities which led to drug addiction. He dropped out of high school at one point. Eventually, he overcame, making his way to being accepted to Brown University and graduating at the top of his class. He did so because he was given tools that, eventually, he made his own and then used to achieve the goals HE set for himself.
Of course, I have no guarantee that my son’s story will end like similarly. The big picture for us, is that my Aspie-son take hold of HIS life tools and start to find HIS purpose in order to develop goals that are HIS owns, goals that HE invests in. If I step back enough, I can see that even failing 8th grade has the potential t0 be a part of that path. With that thought, gripping fear inside me starts to subside.
Finding joy right now.
I found renewed joy as a parent before by looking for pointers to Daniel’s purpose in the situation rather than just trying to guarantee that he meets his potential. When I stop viewing the situation as all about passing 8th grade, I can possibilities for joy. I can see the ways my son is starting to mature. There is a reduction in conflict in our home.
I am practicing these principles today as my son heads to school to take a constitution test that he must pass to be promoted to 9th grade. I believe he is unprepared. I spent a portion of last night struggling not to step in and try to control him to success. Today, I am in a better space. I hope he passes but I have also found the positive possibilities that could be if he fails this test. Either way, he and I will both know that this hurdle was handled 100% by him and his way. He is in control of his life.
How do you strike a balance between over-protecting and unsupportive?
This is a picture of my mother, taken when she was about 10 years younger than I am right now.
My mother is magical. Everyone who meets her loves her, but particularly children. She seems to to always understand and connect to children effortlessly. She was the only person that my Aspie-son would allow to cuddle with him when he was a baby. He would sink against her chest as she rocked and sang to him.
It was my mother who taught me that the basis of being a mother was a deep, authentic love. I learned the most powerful part of being a mother from my mother. I learned to love from my mother.
My mother made mistakes but I have always known she loves me. She loves me, not because of what I can do for her or because I am fulfilling my potential. She loves me because I exists. She loves me because I am her daughter. Her love has always been unconditional.
Her love has always been strong. Strong enough to give me space to learn, even while she watched nervously. Her love has been strong enough to look beyond my mistakes to show me that I am intrinsically valuable. Her love has been strong enough to grow and change. My mother has continued to learn and grow as a person and encouraged me to do the same.
Being a mother is a challenging adventure. This is particularly true when raising an atypical child. However, whether you are raising a typical child or a child on the spectrum, being a mother requires a strong and authentic love. Happy Mother’s Day to my mother and to all the mothers!
Hello! I am Rachel aka Aspergersmom. I am a wife to my wonderful husband and we are parents to a combined family of six (yes, 6) children. The ages range from 18 to 4. Three boys, three girls. Daniel is my first born but number 3 in the chronological line up. He is amazing and challenging. Here is where I write about what I learn and experience raising him - a child on the PDD spectrum.
Raising a Child with Asperger's Syndrome 