It has been three weeks since my son has been diagnosed with Aspergers, OCD, and ADHD. I cry all the time. He is so angry, and so sad, and I don’t know how to help him. I also lack perspective. I worked with autistic kids, and studied them. It was academic. Now it is real. I know the challenges he will face, the struggles we will have. I know how to teach him, and that I will forever be the mean mother. My perfect baby who was going to have the healthy, happy life that I can’t now has to struggle. I did not want this for him.
People keep suggesting I watch the t.v. show Parenthood. Today I watched the pilot and sobbed all the way through. The little boy is about the same age as mine, and has the same symptoms and problems. My son is a little less severe, but it’s like looking at a mirror. Watching the parents admit that their child had a problem was even harder. Part of me still wants to deny what I have seen for the past several months. I knew he had Aspergers the minute I watched him start biting himself. When the psychiatrist told me, all I could think was now everyone will know. I want to tell strangers on the street that he has Aspergers because his behavior is so atypical, and I feel uncomfortable. He doesn’t really care what anyone thinks, although he doesn’t like it when he’s teased.
Our extended family has had mixed reactions. Some are sad with us. My sister-in-law understands on a whole different level because her son has Aspergers too. Some think I should home school him, which would be a disaster. I am too sick to home school him, and he needs the interaction with other children to learn how to socialize and adjust to changes in routine and other things. In particular they hate the medication. However, without the medication my son is an anxious, angry mess. He rages and has manic episodes. He’ll cry for hours over the slightest thing. Even on the medications he has a really hard time. It is something that most people don’t see because we try to take him out of situations, or isolate him when he gets like that. He cries everyday, multiple times a day over things that I cannot change. I have put him on the GF/CF diet, and he is really angry at me that he can’t have milk, cheese or chocolate anymore. He complains so often, and I feel like such a mean mom, but he is already gluten intolerant, and this diet could help him a lot, and make it so he doesn’t have to take as much medication.
His theater class told me he wasn’t a “good fit”, which when the school told the parents that on Parenthood I sobbed. What is a good fit for a kid with Aspergers? Where do I take him? The Psychiatrist and Psychologist we are working with want him to stay in the theater class because it will teach him to fake social interaction, even when he isn’t interested, or doesn’t want to do it. He is afraid of fire, just like the little boy in Parenthood, and he prays that I won’t die and obsesses about our families health. One of the hardest things to hear was that 1. he wants a sibling to play with, and 2. he is traumatized because of my health issues. Typically aspergers kids don’t struggle as much with the mania and anxiety until they reach 9 or 10. The psychiatrist told me that Ben has reached that stage much earlier because of the trauma of my illness. I know that I cannot control that, or my inability to have more children, but I feel so guilty. I make my son miserable. Aside from the special diet, the pushing his limits to teach him to tolerate change and working on social skills, I am sick and can’t have kids, and he is miserable and cries all the time. Then I cry. I cry hard.
I know that others have it much worse. He could be nonverbal, self-injurious, and have other extreme behaviors and sensory issues. He could be dying of cancer or some other illness. I could not have him at all. I would not trade, but my heart still breaks every time he cries and I can’t console him, or have to ignore it. He is my only child. The only child I could have. I know his life isn’t over, and that his chances of becoming independent and even having a family are great. I know that he will eventually understand and maybe even appreciate my efforts. I am just sad. He is still the same little boy he was three weeks ago, but I am a different mother.
I am much more sensitive to the comments of others. I need to build a tougher shell and not worry so much about what people say and do. His vice-principal told my husband that it was “obvious” he had Aspergers. I am afraid they will make him change schools next year because they don’t want to deal with him. I am afraid that he will be bullied and kicked out of the theater class that he loves. I am afraid that he will hate me for all the interventions that are necessary to teach him to grow up and be independent. I am afraid that he will never reach that point of independence. I am afraid of the opinions of my family, sometimes we judge each other the harshest. I am afraid of the medical bills that we cannot pay and the treatments that might make all the difference, but that we can never afford. I am afraid that the strain of my illness and his struggles will tear my marriage apart. I am afraid that my illness will get worse, and further traumatize him, and make it impossible for me to parent him in the ways that he needs. I am afraid of the label. I am afraid that he will be diagnosed as bipolar. I am afraid of the judgements of others, of their stares, and their opinions of my parenting when he melts down in stores, or wanders off, or becomes angry and manic and starts hitting and destroying things.
I am also so angry. I am angry at the Vice Principal for her insensitivity and obvious disregard for the needs of my child. What if her opinion affects how others view him? How do I deal with her when she is also my husband’s supervisor. I am angry that I can’t be healthy and more active in his care, that we are in debt because of all my medical bills and cannot afford the treatments and therapies that he will need. I am angry that we cannot pay our bills or afford our medications. I hate not being able to work. I hate being home and sick and alone all day. I hate being sick all the time. I hate being in pain all the time. I hate that people don’t understand. That they cannot see how hard we try, and how much we love him. That they don’t get Aspergers and keep telling us it’s normal or typical, when for him it isn’t. Even if it is normal or typical, we have to teach him so it doesn’t continue. He doesn’t just get it. It isn’t just a “boy thing” or a “kid thing”. He’ll never grow out of it. I will have to methodically teach him each step, each behavior. He will have to go to special groups to learn how to interact with kids his own age. I will have to have friends over, and supervise/teach him how to play. That isn’t normal. And when I am done I will go to my room and cry. I want my son back. I want my health back. I want the life I dreamed of and prayed and hoped for, not this. I am jealous of my siblings and their lives. I am jealous that they can have more children. That they are healthy enough to teach and raise those children. That they have money enough for what they need and want.
I have been married for almost 10 years. We have always struggled. Partly because I married a teacher and they aren’t the big earners, and partly because we have massive medical bills. We try hard. We budget, we don’t go anywhere. We don’t go out to eat, we hardly leave home. Our special diets are expensive, because I am allergic to gluten, and Damon is allergic to milk, and now Benjamin is allergic to gluten and milk, and should be off of high-fructose corn syrup, food dyes and so many other foods. It’s craziness. How do I feed my son and get him his medications and doctor’s appointments when we could barely make do before? I’ll have to win the lottery or something. I know I am not alone in my financial struggles, that the economy has made everyone struggle. We have had to borrow money from family, and it is embarrassing and frustrating and makes me feel like a complete idiot. It also makes me feel guilty and incompetent. We have had help from our church, which has been a huge blessing, but it too makes me feel guilty and incompetent. We are so blessed to have the help, but I would be the one who helps, not the person who is constantly in need.
What I wish for the most is one person who gets it. Someone who I can talk to who knows what I am struggling with both with my son and my health. Someone who won’t judge me, and won’t hate me for my struggles. Someone who can be there when I need them, and help me with this so I don’t feel alone. Then if someone could fix our financial crap I would be the happiest girl on the block.