by Band Back Together | Oct 22, 2014 | Anxiety, Anxiety Disorders, Coping With Anxiety Disorders, Generalized Anxiety Disorder Resources, Genetic Disorders, How To Help A Parent With a Special Needs Child, Maple Syrup Urine Disease, Parenting, Special Needs Parenting |
My daughter brought home her first trimester report card yesterday. She got all A’s and B’s, which I know will make her grandparents proud. I’m proud too, of course. But….
I read more than the report card. I read her progress report on her IEP goals. The report that says she’s making “slight progress” in her language arts and math classes. These are classes she takes in the cognitively impaired (special ed) room. The report also reminds me that she reads at a third grade level in some areas, and at a first grade level in others. She’s been at a third grade level since about fifth grade. She is in seventh grade.
This is when the anxiety creeps in again. When I start to worry about her future. Will she ever read at higher than a third grade level? Will she ever be able to do more than basic arithmetic? If she can’t take the standardized tests in high school, will she even get a diploma? College is likely out of the question, but there’s a tech school here in town through the school system, maybe she can go there?
Then there’s the jealousy. Hearing my friends and acquaintances kids’ read four grade levels beyond their age – skip grades – attend Big 10 colleges – earn all A’s.
Then I just try to focus on what’s happening right now. One day at a time. Push those worries back to that dark corner of my mind.
Until the next report card comes.
by Band Back Together | Jul 22, 2014 | Attention-Deficit Hyperactivity Disorder, Feelings, How To Help A Parent With a Special Needs Child, Parenting, Special Needs Parenting |
G., my five-year old, has weekly therapy sessions. Right now we’re using therapy to help manage his ADHD symptoms but I’m also hoping that it’s able to help with his inability to express his feelings or relate to other children. My husband recently sent me an e-mail mentioning that G. asked when N., my two-year old, was going to start going to therapy.
And it made me cry.
G. doesn’t know that he’s different. I hope that he never does. We’re taking the necessary steps to help him at an early age. But it is hard. It’s hard having a child that behaves and reacts to things in a way that I don’t understand. I know that some of it, of course, is his age, but a lot of it has to do with ADHD.
T-ball is a prime example. Yes, I know. They are five. Attention spans aren’t exactly what your average five-year-old is known for. But when his team is on the field, the other little boys watch the ball and chase after it while G. lets it roll on by because he’s staring at the sky…or picking grass…or laying flat on his back in the outfield.
I’m the type of person who likes routine. I want things to go the way they’re supposed to go and get stressed or anxious when they do not. I realize that is my issue, and I’m working on it.
Routine does not work well with G. Requests with multiple steps do not work with G. Trying to get him to focus on anything for more than a few minutes does not work with G.
I know how swimming lessons and gym class have gone. I know how he has responded to soccer and T-ball. School is still a bit of a mystery to me. I know he’s a sweet and charming child and I know that he does well with women he likes. I also know that Kindergarten is packed with activities which means that the kids are never at any activity for too long, although the lessons of the day are repeated throughout, just in different ways. So it’s probably ideal for him.
But still, I worry. I worry that he can’t tell me the names of any of the students in his class. I worry that he’s not learning what he needs to be learning. I worry that Kindergarten may be the easy part, and next year first grade is going to throw us for a loop. I worry because that’s what I do, but also because of who he is. I’ve been worried about school from the first day I suspected that he had ADHD.
I worry because I watched my brother grow up with ADHD, and I watched him struggle. Things like school and making friends were so much harder for him. My brother is doing fantastically now. He’s working on his Master’s Degree. He’s in a career suited to his interests and personality. And he is still best friends with his best friends from fourth grade. One of whom was the best man at his wedding.
I know that I am not alone. I know there are other parents out there dealing with the same issues with their children.
On the bad days, however, it doesn’t make it any easier.
by Band Back Together | Dec 1, 2010 | How To Help A Parent With a Special Needs Child, Parenting, Special Needs Parenting |
I just spent two hours trying to explain to my middle child, who is 3 1/2 (and I suspect autistic), that the puzzle she insisted I get down for her did.not.exist, that hitting her sister was unacceptable, and that she needed to be quiet because other people were trying to sleep.
I spent 30 minutes in the closet, pointing to each puzzle we did have and asking, “This one? No? This one?” over and over again. We only own three puzzles, if that gives you any idea of the sheer frustration I experienced. She kept pointing and saying in her fuzzy Bitsy speech, “There! Up there! Pongo!” Pongo, for those who do not know or readily remember, is the father dog in 101 Dalmatians. We own both the original and the sequel, Patch’s London Adventure, but she did not want a movie. That much was clear as day, because every time I showed her the movie case, she screamed and shook her head no. Ooooo-kay, back to the puzzle-pointing-is-it-this-one? game.
Every time I didn’t find what she thought should be there, she got a little louder, a little more shrill.
After thirty minutes had gone by, I was sick of trying to convince her it wasn’t there, and I left, apologizing that I couldn’t find it but that we really don’t have it. I swear. This set her OFF.
She started hitting her sister in her frustration — this is a common problem with her — and we spent the next twenty minutes on a merry-go-round of, “Say sorry to Punky.” “NO!” “Bitsy, we do not hit. Say sorry.” “NO!” “Do you need to sit in time-out?” “NO!” “Then say sorry to Punky.” “NO!” “I’m counting to 5–” “NO!” “–and if I get to 5–” “NO!” “–I’ll have to put you in time-out.” “NO!” “1″ “NO!” “2″ “NO!” “3″ “NOOOOOOOOO!” “4″ “NOOOOOOOOOOOOOOOOOOOO!” “5. Okay, I’m putting you in time-out now for hitting Punky and not saying sorry.” “NOOOOOOOOOOOOOOOOOOOO!” I sat her by the front door (designated time-out spot) and she started shrieking. Not just the typical “I’m upset” screaming most children use to bloody ear drums, but the kind that evokes images of murder and torture. I’m a teeny bit surprised that our neighbors didn’t call the cops or CPS or something. Ten minutes of this while I sat there like an asshole, reminding her to be quiet because people are trying to sleep, including her baby sister.
She refused to calm down. For an hour. And before you think she couldn’t possibly go on so long, I know for a fact that this child can scream and shriek and cry and whine for four hours solid — and that’s only MY record hold-out time. I’m convinced she would have gone on longer had I not given in. But that was almost a year ago, and her tantrums — if you can even imagine this — have gotten worse.
I try redirection, and sometimes that works… but sometimes it just doesn’t, no matter how hard I try. And there are times where I don’t believe redirection is appropriate. Sometimes there just have to be consequences. Like hitting, for example. I’m not going to use, “Would you like to color, Bitsy?” when she’s smacking her sister around. That’s like I’m rewarding her for hitting. If they’re fighting over a toy and I notice she’s getting worked up, yes, coloring works as a distraction. But her safety and the safety of my other children demands a direct correction.
But Bitsy doesn’t take direction well. She screams and hits and bites and throws things, going so far as to plug her own ears so she can scream harder and louder without hurting herself. It’s like she’s trying to drown us out because reality and her idea of reality aren’t meshing, and she can’t handle it. Literally cannot handle it. Not “chooses” not to handle it, not “doesn’t want” to handle it, cannot handle it.
How do you deal with that? I’ve yet to find a way. I can’t trail her all day every day to catch every little stress-trigger and divert her from it. It’s just not feasible — I don’t even think it would be feasible for a stay-at-home parent of an only child. There are things I have to do; clean the house, wash dishes and laundry, mend clothes… And I have two other children, one of whom is only nine months old.
And you might wonder, why would I have another child when she was so time- and attention-consuming? Because 17 months ago (baby was born at eight months, not nine), she wasn’t nearly so bad. Her behavior, while problematic at times, was not constantly this way. She had her bad days, certainly, but she had lots of good days, too. I don’t know whether it was bringing another child into the house or just her own natural progression that did this to her, but I did not intentionally put myself in this position. I had no way of knowing this would happen, but it did, and now I’m stuck in it. And it isn’t just her behavior that makes my days trying.
My beautiful little girl used to eat a wide variety of food; in fact, there was very little she wouldn’t eat. Pears, the peel on an apple, cabbage, horseradish, and sauerkraut. That was it; that was her list of dislikes two years ago, and she’d been exposed to a very wide variety of foods. But now I’m lucky if she eats anything but granola bars, bologna, and fruit snacks. I’ve seen so many healthy foods she loved fall out of her diet, like broccoli, chicken breast, corn, fish, nuts, fruit of all kinds… The only real fruit that has passed her lips in months is blueberries, and I stared in amazement as she ate those.
I don’t know what to do anymore. I have to wait until after the holidays to start the ball rolling on being evaluated, and even then it is a long process. I have very few ways to cope day-to-day. I have no family, no friends nearby who can help me out or give me a break once in a while. And even if I did… who would be able to deal with her? And all three? Forget it! Their father can barely handle them, and he’s their father. He’s good with kids — he has six little brothers! — and even he throws his hands in the air and says he doesn’t know what to do anymore. I can’t even count how many mini-breakdowns I’ve had over the past few months.
And there’s no relief in sight. God help me.
