I have pretty severe anxiety. I literally pray for patience almost daily because I'm not naturally patient at all. Everything is serious. Everything needs immediate attention. I have 4 children that live with me: 18-yr-old, 17-yr-old, and 5-yr-old girls, and a 7-yr-old boy. Each of them have things that are important to them and those things need to be addressed. They are important. I'm married to my best friend, who works overtime weekly and goes to school. When he's not in school, he's studying. So far I've been able to pick up the "man" chores with ease and do things he did at the house, with a few exceptions (I don't mess with the cars... ever... I would pop the hood, stare, and close the hood). If anything, I've let my marriage take a backseat to the kids, because as anyone with kids knows, their problems are the only problems, at least to them. My son climbed onto the side of the pool they begged for the other day, so I told him that if it fell that would be it. Over. No more pool. He said, "You could just get some money and buy another one!" Oh, you sweet little soul...
My sister has a son with severe autism. They now have what they refer to as "the spectrum" which means there are no two autistic cases that are the same. If your child is on the spectrum, he/she could be completely different from other cases. Doctors are getting more information daily but there is still so much that is unknown. My nephew was nonverbal for a long time. He showed the obvious symptoms as well as having hydrocephalus and requiring brain surgery. Scary stuff. I am not sure if his autism is a result of the water on his brain or if it's altogether separate. But it's all-consuming for my family.
My youngest is 5 years old now. Because I've been around kids for so long, I knew when she began developing that something was different. I couldn't put my finger on it. She speaks very well. She's intelligent and high functioning. But she has quirks. One of her older sisters was diagnosed with Oppositional Defiance Disorder as a child. I see signs of it in my baby, but it doesn't explain everything. She has symptoms of ADHD (Attention Deficit Hyperactive Disorder) as well. She wears me out. It's difficult to find people to listen to you when your child seems so "normal" on the outside and for the few minutes they spend with that child. I keep to myself for the most part, and I am introverted by nature, so I don't socialize much by my own choice. Now it's become necessary because of the daily struggles I face. I can't imagine what it must be like in her little mind.
There seems to be a genetic link associated with autism. They just don't know anything about it yet. Asperger's Syndrome is considered to be on the spectrum but is a high functioning form, and is distinguished by a list of particular behaviors/circumstances. My daughter exhibits them all. The only reason she hasn't received a diagnosis is her ability to talk. She not only converses with people, she converses with most people. About anything. And everything. She has the ability to pretend. For the most part she copies those around her and does what they are doing. But she can do it. I think it's wonderful. My frustrations come from seeing the struggles she does face, and not being able to help her. I have been placed on multiple waiting lists for evaluations and did manage to get her to see one group of specialists so far. They spent an hour a week with her for several weeks and told me they couldn't give her a diagnosis without more information. Sigh. They wanted to see how she did in school first (This is where a tear drop falls on my keyboard).
I'd like to share what a typical day is like, a good day, which is something I rarely do, because it's hard. It's embarrassing. You probably won't understand. You might judge me. You might judge her. It causes extreme anxiety anticipating what tomorrow holds... I've considered asking my doctor for something to help with the stress. But what if it makes me too groggy to take care of the kids?
My littles are early risers. They are usually up by at least 6 am, sometimes earlier. By the time I'm up and functioning, they are usually wearing some sort of costumes and running around. Sometimes they are fighting. One of my biggest concerns with my youngest is her lack of impulse control. I know, I know... kids her age have little impulse control. I've read all of that too. I've studied it. I practically have it memorized and can tell you the title and page number. I'm not talking about that impulse control. I'm talking about hers.
I love the beach and decorating my house so that you feel like you're there when you walk in. I love my family and think they're beautiful, so I put up a lot of photos in the house. I took the kids to Hobby Lobby the other day to look for beach décor and picture frames. It's summer break and I thought they would like to get out of the house. Hobby Lobby isn't really a place they can go bananas in, so I told them if they behaved, they could get a treat when we were done. I love getting them treats. I love making them happy. The youngest is big enough now that she really doesn't fit in any grocery cart anymore, but I wish she did because she is off and running as soon as we get out of the car. Doesn't look for cars, doesn't look for people, sings a song and keeps running. Cue Mom's heart palpitations... We get inside the Hobby Lobby and immediately she's gone. I call her and tell her to follow me. She doesn't want to be left, so I have that going for me. She will catch up and walk just out of reach of my hand. If we see a baby, I've lost at least 10 minutes to her cooing and asking the mother everything, including what the baby is wearing, and how the baby is fed. Most people are kind. Some are not.
As we continue through the store, she continues to leave my sight and I continue to receive looks from store clerks and other customers. I stop, and call her to me. I bend down to her level and remind her that she needs to stay with me to get a treat. She agrees. I stand up. She's gone. Meanwhile, her brother has found a basket for $ .60 that he would like for his treat. Of course! He holds it with pride as I continue looking at frames. There are a lot to choose from and I need to remember what sizes I need. Elsa (the youngest) is running around, upping my blood pressure and fraying my nerves. I again and again and again call her to me. I finally let her know that if I call her again, she will not receive a treat. She tests me. I tell her no treat. She runs up and kicks her brother as hard as she can, continuing until I physically separate her from him. She then turns her frustration to me and kicks me multiple times. I don't have the heart to tell my son he can't get his basket. so I immediately head to the check-out so we can leave as fast as possible before it escalates any more. As we are walking, she trails behind me, dropping "f-bombs" as loud as she can. This is a regular occurrence (with Asperger's particularly) and not a reflection of my household. Other people don't know that though, and give me horrible looks as I buy the little basket. I end up telling the cashier that she has special needs and we leave with my head down and shoulders slumped. I didn't give in. There was a time I would have for peace. But I need her to know that the world doesn't work that way.
I attempt to grab her hand as we cross the parking lot. She refuses. My choices are to snatch her by the arm or cross and have her follow not holding my hand, My son is on the other side of me, watching everything, looking to me for the right answers. I must always remember that what he sees will determine how he raises his children.
As I get to the other side and turn around, a woman in an SUV honks her horn at me and rolls her window down to shout that my child is still across the street. I know, I tell her, I'm keeping an eye on her. What this woman doesn't know about are all the times I've placed my body in harm's way to keep my daughter safe, all the times I've responded calmly while others were rude to my baby because they just didn't know. She doesn't understand that if I don't make these trips to Hobby Lobby and the grocery store, I'll never leave the house. She doesn't know that I try so hard...
She does come eventually, and we do get on the road eventually, but not before she takes off her seatbelt as I drive out of the parking lot, and dumps a bottle of water in my lap while we're moving. I pull into a parking spot and get out to physically buckle her in. My car is small and she often takes out her aggression on me or her brother sitting beside her. I wonder a lot what he must be thinking. I wonder what she's thinking, too. As I lean over to buckle her in, she kicks me in the jaw as hard as she can. It still hurts. I took her home and we didn't do anything else that day.
One thing I've learned about parenting is that most kids respond to taking things they care about away from them. The teenagers respond to no technology and no car. My boy loves his Legos and Hot Wheels. Elsa doesn't respond to much so it's tough to discipline her in that way. Her attention span is very short. If I take away her bike, she'll find something else to play with. I'm still learning about her every day.
She's not a bad kid. I don't think any kid is "bad". Something drives behavior. I can't tell you the nights I've laid awake talking to God and to myself. My lip and eyelid twitch regularly because my stress levels are off the charts as I try to make sure everyone is happy and healthy. The last doctor that I saw told me to eat Tums because they are loaded with calcium, which counteracts the large amounts of cortisol that my body releases due to my stress levels. Sigh...
People also don't see the piles of flowers she brings me every day. They don't see her dressed as the
Snow Queen, singing at the top of her lungs. They don't see her cute quirks, the endearing ones, like when she watches movies and can quote them word for word, as well as her bedtime routine that takes forever but is extremely important to her. She is loving and funny. This struggle is hers. It's up to me to help her find the answers. I'm trying. We're currently looking at another type of specialist, possibly out of state. I just want answers. I just want to help her. I just want her to be happy.
If you see a kid having a tantrum, don't judge. You don't know what struggle that family is facing. You don't know what a doctor may have just told them, or the tears that mother will cry when she leaves that aisle. Try smiling. Try praying for that family. Be kind. Everyone is different. No one is better. Just different.
