Today is my daughter's first day of school. Ever. I'm posting this from a coffee shop a few blocks from her school. I can't bear the idea of being more than 5 minutes away, in case she needs me. Not likely. Judging by the way she dashed into the classroom and the general excitement she has for anything new, I doubt she'll think much about me until it's time to go home. This is definitely much harder on me than it is on her. The last eight months have been crazy, but this milestone seems like a good time to reflect. By the end of 2009, we were pretty confident that my daughter had a developmental delay. That was confirmed in early January and since then, our lives have been focused on navigating the world of therapists, doctors, insurance, and now schools. She's my only child, so I don't know what the heck I'm doing most of the time. I don't have a typical child, so I can't tell how my experiences are different than anyone else's, but I would love to have a discussion about it.
My daughter turned three in May. At her 2 1/2 year check up in November, the pediatrician said it was time to address her speech delay. At that time, she was babbling a lot, but none of it was really intelligible. You'd get a stray noun here and there, but mostly it was just jibber jabber. This was extremely frustrating for everyone. She couldn't tell us what she needed and we couldn't give her what she needed. My daughter started pulling her hair out and she had a large bald spot on the top of her head for a long time. As a mother, it was deeply disturbing to see my daughter literally hurting herself to release her frustration. We had her hearing and palate checked, to make sure there were no physical problems disrupting her speech. That was about $950, by the way. In January, my daughter was evaluated by the Early Steps program. This was our first exposure to the incredible bureaucracy involved in getting services with a child with disabilities. Now, I'm a liberal to the bone. I believe that the government should provide certain services to people who need them, especially when it comes to health care and early intervention. And I understand that any time services are provided at no cost, there is going to be a lot of red tape, but it was still startling to see my child reduced to pages and pages of scores on a scale of 1 to 5. I tried to remind myself that this was just a diagnosis tool, like an x-ray to check for fractures. At that meeting, there were four women evaluating my daughter. Each would sit and play with her or ask her to do certain things, then everyone would scribble notes on their notepads. My daughter loved this, and I'm sure the women were sincere in doing their jobs and their desire to give kids the help they need, but it was so disconcerting to watch my daughter being treated like an experiment. What happens when we hand her this ball? Will she follow us and walk on this white line? If we ask her to put these pegs in that box, will she? Again, I completely understand intellectually why an evaluation works this way, but it was still disturbing. I had to resist the urge to tell them that she really can do this task, she's just distracted, or if she can't do it, then it's my fault for not exposing her to it.
When the evaluation was over, we were told that she was seriously speech delayed, which was no surprise, but that she was also cognitively delayed. This I objected to. My daughter is brilliant, she just can't talk! I was furious (a defense mechanism I realize now) until they explained that they marked her that way because she didn't respond well to commands. As I'm writing this, I'm still defensive and want to point out that she was ignoring the commands, not that she didn't understand. Still, over these months, I've come to terms with the fact that my daughter does have a delay, and she needs help. Trying to pretend she's perfectly fine is no help to her. Early Steps arranged for a speech therapist to come to our house once a week and an "Early Interventionist" to come twice a month. I never figured out the point of the EI, and since she was constantly canceling and rescheduling, my daughter only saw her twice before her third birthday. The speech therapist, on the other hand, has been a godsend. My daughter adores her and the therapist adores my daughter right back. During their sessions, I often hear uncontrollable giggling from both of them. The therapist ends each session with homework for my husband and me to work on with my daughter during the week. We realized we weren't helping by just giving her what she pointed at without asking her to say the words. We got better at this and my daughter went quickly from "milk" to "more milk" to "more milk, please." We worked on making her answer appropriately to yes/no questions. For a long time, we'd ask "Do you want some milk?" and she'd answer "Milk!" but we learned to wait until she says "yes" before giving it to her. She still sometimes has a problem with that, although now it's usually "Milk, please, yes!"
Beyond speech, my daughter has problems staying focused and she has a HUGE problem with not messing with stuff. She seems fascinated by everything and wants to touch, pull, poke, open endlessly. We have about half of the house blocked off with baby gates for her. In that area, everything is baby proofed. We tried to put those electric cord covers on some of the sockets, not the flat ones that close off a socket, but a cover that's supposed to go over where the electric cord is plugged in. My husband and I spent a while getting one installed where the TV and cable box plug in, and it took my daughter about 30 seconds to figure out how to get the cover off. You have to squeeze both sides at once and slide it off. I can't even do it, but my daughter sure can. We ended up just drilling a hole in the wall behind the TV and putting the cords through there to the next room. In a moment of frustration, my husband took all the buttons off the front of the TV because my daughter was turning it on/off, volume up/down, channel up/down and driving him crazy. The on/off button left a little hole when he took it off and she figured out how to unbend one of her toys flat so she could poke it into the hole to turn the TV on and off. On the one hand, I am impressed with her ingenuity and I don't want to discourage her curiosity, but on the other hand, it's exhausting. Anything we don't want her to touch has to be up high or over the baby gate. She still sleeps in a crib because she needs to be confined if no one is watching her.
Around March, after a session the speech therapist gave me the number of a local ped and suggested we get my daughter evaluated by him. He did a great job. He spent about four hours with my daughter on the floor of his exam room, playing with various toys. He found that she had a surprisingly large vocabulary (she knows words that I have no idea where she learned them from,) and she tested above her age on things like problem solving, mostly the mechanical type like getting a box with latches open to get the ball out. She also teased him by intentionally putting puzzle pieces in the wrong place to see how he would react, but her useful language was nonexistent. With this "disparity of skills," as he put it, he diagnosed her with PDD-NOS, Pervasive Developmental Disorder-Not Otherwise Specified. When he told me this was part of the autism spectrum, I was stunned. To me, kids with autism were reserved and anti-social. My daughter was absolutely neither of those. The doctor told me that she was inappropriately social, in her case, too willing to interact. She climbed into his lap within the first couple of minutes of sitting on the floor. She has no fear of anything really, she'll run up to strangers or animals without hesitation. He also diagnosed her with a touch of OCD. I kind of knew that already. My husband has OCD, too, he just won't admit it. I began to think maybe the doctor was right. He told me he was going to write up a report for us, and he warned that he was going to write it up as extreme as he could justify, but this was to help us get my daughter the therapy she needed. Clearly, this doctor understood the politics of working with the state and with insurance companies.
My husband was unable to come to the evaluation with me, for reasons I'll get into later, and I had to rehash the whole thing for him. He was furious at the "A" word, and thought the doctor was one of those crackpots who saw autism in everyone. He also denied the OCD, but considering he denied his own OCD, I wasn't surprised. It took some time and some research on his end for him to come around and, thankfully, he has. For me, the diagnosis changed everything. It made me approach my daughter from a different direction. If she was upset for no obvious reason, I would look around to see if I left a light on in another room or didn't close a door completely. That helped immensely. I was able to see her behavior in other areas as something she couldn't help right now, rather than willful disobedience. There is plenty of willful disobedience to push my buttons, but I am very good at recognizing when it's there and when it's not. More often it's a need to touch something and she literally can't NOT touch it.
Over time, I've become less convinced my daughter is truly on the autism scale. I think, with the right therapies, she will get beyond her speech delay and fully expect her to be like the typical kids of her age. In my opinion, this won't be a continuing problem for her. I don't know if she's going to be able to work out her need to touch things, but I hope she'll be able to control it so it doesn't disrupt her life. However, the autism diagnosis opened up doors for us. In Florida, a law was passed as of January 1st, 2010, that requires insurance companies to cover all autism treatments as they would an illness or injury, up to $36,000 a year. That's massive for us. When my daughter turned three, the Early Steps program basically stopped providing services for her, with the intention that she get services through the public school system now. My insurance company denied coverage of the speech therapist because speech therapy isn't covered unless she had been talking and lost the ability to do so. They also denied the doctor's visit because it was considered "mental health" and my insurance policy had a $3,000 LIFETIME mental health max, which I probably met sometime in 2004. But once we had the diagnosis from the doctor, and once a friend with an autistic son told me about this new law, I was able to do the research and then force my insurance company to cover those services. Under the Florida law, the insurance company can't reduce the covered charge more than they would if my daughter had a broken arm, for example. My insurance policy is one with a high family deductible, then no cost to me after the deductible is met. I have my own slew of health problems so the deductible is usually met in May. So for practical purposes, all of my daughters therapies are free for us. We are able to keep our wonderful speech therapist. If we didn't have that law, we couldn't afford the $50/hour charge, and we would have to rely on the public school system to provide the therapy.
I feel for people working in the public school system. I believe most of them, at least at one time, had grand ideas and plans for the difference they would make in the lives of children, but with budget cuts and a huge lack of resources, I imagine plenty are burnt out. When my daughter turned three and Early Steps moved her to the public school system, we had another evaluation to develop an Individual Education Plan. It was a joke. After 23 pages of checked boxes and boilerplate verbiage, the recommendation was for my daughter to attend pre-K for 7 1/2 hours a day, with 25 minutes a week of speech therapy. At this point, the county didn't know (and probably didn't care) that we had a private speech therapist, so their entire recommendation was 25 minutes a week. What craziness. I asked if I could sit in on or observe the class, and was basically told no. Technically it was yes, if I could get approval from several admins and I could observe for 10 minutes, once. At this point, my daughter couldn't really talk, so the suggestion to drop her off in the morning then come get her later, without her being able to tell me what happened that day or being able to see for myself was just ludicrous. I have to believe that the staff who handed us the IEP had to KNOW that is wasn't the best thing for my daughter, but that was all they were able to offer.
On the speech therapist's recommendation, we checked with the local United Cerebral Palsy chapter because they run a charter school. UCP is a much better fit for us and that's where my daughter is today. She's in a class of 12, with three adults. One child is confined to a wheel chair, and the others seem to have speech or other kids of non-physical delays. The classroom is set up to be observed from the hall. I met many other parents there, some with kids with diet restrictions or physical disabilities where the parents were unwilling to send the children to public school for fear they wouldn't get the appropriate attention or care. I met one very nice mom and chatted with her for a few hours sitting in the school lobby this morning. I invited her to come with me to this coffee shop but she wouldn't leave the building. That makes me feel better about my own hesitation.
My daughter's speech has dramatically improved in the last month or so. It was an explosion of improvement. One day I took a nap (because I need one, even if she doesn't) and, when I came out of the bedroom, she said "Mommy, you're back! I'm so glad to see you!" My husband and I just stared at each other wondering where the heck that came from. She seems to be learning entire phrases and I'm unclear if she truly gets all the pieces of the phrase. Like if her arm itches, she'll say "I'm all itchy. I got bit by bugs outside" even if she hadn't been outside with bugs. There are several phrases like that, where only part of it is really applicable, but she says it all anyway. She has been doing much better with talking about things that happened or what she wants to happen. I feel like we can actually have a conversation and it's wonderful.
I have questions for the community, because I'm sure there are many, many people here with experiencing parenting a child with a disability. It would be so nice if I could just Google my questions and find a three step solution!
Does anyone have experience with a child who cannot resist the urge to touch, open, or mess with things? During the day at our house, it's not really a problem but we are not comfortable with my daughter sleeping in a toddler bed instead of a crib, even though she's 3, because it's simply too dangerous for her to be able to roam. Once she's able to get out of the crib (at the moment she's not even trying) we think we may have to just empty her room of everything and put a baby gate up so she'd just be in that one room unsupervised. That just seems so harsh. It's also a problem when we're out of the house. She is a runner and if she sees someone or something interesting across the street, she takes off. The only way I've found to prevent that is to keep a hand on her at all times. Any advice would be great.
What kind of stress are you seeing on your marriage/relationship with your partner? I quit my job in December, with the full support of my husband, partly because the owner started to get really paranoid (I think due to senility) and the unwarranted hostility towards me was unbearable. I was working long hours without additional pay and coming home in tears after getting yelled at and accused of sabotaging the company, stealing money, etc. In light of the issues my daughter was having, and my pure misery at work, I decided it wasn't worth it anymore and quit. At first I tried to find another job, because we were down to basically half the income we had when I was working, but I couldn't find anything at first. My husband works from home (in IT) and so, from the beginning, my daughter has been home with him. But he was working, so she didn't get a lot of attention from him during the day. Then with me home, my daughter started to improve a lot. She and I had a great time and she really thrived. At that point, I realized I wanted to be a stay at home mom. We did a mortgage modification to drop our mortgage to about 60% of what it was before. My husband asked for, and received, a HUGE raise, so our income is now about 85% of what it was with us both working. We have cut back on other expenses, and it's been rocky, but I think it's going to work out like this. However, the dynamics of our marriage have changed drastically. Until December, everything had been pretty equal. We made essentially the same salary and we had equitable responsibilities at home. But now I feel that, since I'm not working, it's my job to do the household stuff. In addition, when my husband got the big raise, he got more responsibility and generally feels more pressure at work. In his job as IT, he's on call all the time. If something goes wrong, all of production stops until he can fix it. During work hours (including weekends and holidays) he has to be near a phone and internet connection at all time. For this reason, he hasn't been able to come with me to my daughter's doctor appointments, or to check out the schools. A couple of times, he planned to come, then got waylayed at the last minute. It is my responsibility to get her where she needs to go and to make sure the school/therapist/play place is appropriate. It can be extremely frustrating when all of this is on my shoulders and yet my husband disagrees with my choices. Some days, I really want to tell him to do it himself if he doesn't like the way I do it.
Well, this turned out to be a much longer diary than I anticipated. Please share your experiences.
Edit: Removed broken link