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Halley's Progress (Online Diary)

Essay Page

In depth...

Sometimes, a topic that I've touched on in one of my log entries may need a little elaboration, or I may want to put thoughts scattered around many entries together in one place. And so I'll periodically contribute short essays to this site.

For example, I might include an essay about a particular question about apraxia or an opinion regarding the latest new I have read about apraxia or speech delay. Or I might write a personal essay about my experiences with apraxia and Halley's medical situations. Writing essays requires a little more work than writing log entries, but it also gives me a chance to really shape and express my thoughts.

What does it feel like?

What does it feel like to have a child that can not tell you where they hurt? What does it feel like when your child is mad, and can't tell you at who or why? What does it feel like to have your child laugh and not know what at? What does it feel like to see tears and not know why? What does it feel like to not know how your child's day is like at school? What does it feel like to not your child's friend's name? What does it feel like when they are sick and can only point to what hurts?
What does it feel like? Well I have learned to know my child in ways other parents may not get to know theirs. I feel as if I have to read her mind, and I do. We can look at each other and know what she is thinking. I have to look at my child everytime she wants or needs something. I can't just say uh-uh, I have to know what her hands and body tells me. In a way I am blessed, I am forced to know her in a way that no one else understands. What does it feel like? Well it still hurts, knowing your child is not the same as others, yet every moment I love her more. I would love to ask, tell me what you think, and her respond, yet when she gives me a kiss on the cheek, it says a thousand words.

I had a bad day.....

There is actually a song called that, and I must say I love it. I really hate to be a whiner, because I know I have alot to be thankful for, but Fridays are really bad for me, and today I am just depressed.
Today, Halley was grumpy, no surprise to me, she got to bed late and hey, its Friday. I hate that I dread picking her up on Fridays, but I know it has to be done. I picked her up, and her regular teacher did not walk her to the car, and she was in tears. I felt really bad for her, and asked her what was the matter...even though we apraxic moms can read minds, she mumbled something, and I asked if she was upset that Mrs. Gebo did not walk her to the car, and she cried nay. Mrs. Gebo came to the car, and talked to her and apologized to Halley, and made things better. I hugged and kissed her, and we were on our way.
We get home and the "non-compliance" starts. I let her binge on some Halloween candy, and it seems as if candy just makes the behavior worse. She continued to be defiant. Later, I asked her to pick up her room, and she refuses, so I tell her that she can come out when she picks up her toys. She cries for about 15 minutes straight, and comes out, and the room has not been touched. I send her back to her room, this continues again for another 15-20 minutes. Her door is shut, but I can still hear her cry over the tv. She came out again. Finally, I tell her if she will stop crying I will help her. The whining has now been happening since 2:30, and it is now about 5. I help her clean her room. Her Daddy comes home, and she is whining about a finger, her tummy, whatever she can do to get attention. She wanted more candy, and I refused to let her have it. By now it is close to 6-6:30, a neighbor kid comes over, and plays for a while, and now it is time to take the Pro-Efa. I ask her if she wants an egg sandwich, she says no. I asked if she was hungry she whines no. I tell her it is now bedtime, then she cries and whines and says she wants to eat. I ask her again if she wants an egg sandwich, she says nay, we go into the kitchen, and she wants a grilled cheese, I have no cheese, she again starts whining and crying. I finally get her to agree to the egg. She is then putting a bandaid on her finger, on her imaginary boo-boo, and she starts whining because she can't get the paper backing off. At this point it is 7pm, and I am feeling I can't take it anymore. I make the sandwich, adding the Pro-Efa to the egg, she sits down, and eats one bite, and says she is full. I ask her to eat some more, she refuses. So now it comes to taking the Pro-Efa in one of those syringes the pharmacist gives you for babies and toddlers, she starts crying again. We add juice to the syringe, and try to get her to take it, she spits it all over the floor. We do it again, this time Pro-Efa only, my husband holds her down, and holds her nose, I hold her head, I put the oil into her mouth, and again, she spits it right out. I tried one more time, and gave up. Who knows how much she actually got into her. But at this point I am done. It is now bedtime, the nieghbor child reads her a story. While she is reding her a story, she is taking a small eraser and putting it in her mouth, Randi then asks her to take it out of her mouth, she refused. Randi takes it from her, and Halley starts to cry. Randi gives it back, and then Halley then shows Randi it is in her mouth again. Randi tried to ignore it. Halley then grabs the strings on Randi's sweatshirt and starts pulling them, Randi asks her to stop, she does not...Randi told her that's it I am going home, and leaves the room, leaving Halley crying again. I went into the room and asked her to look at me, I needed to talk to her, she folds her arms, looks down and says uh-uh. I say one more time, you either look at me, or I am taking the eraser, she refuses again, and I take the eraser. Then she goes out of control, screaming and crying. I kiss her, turn off the light and walk away. I can do no more, I am done, anymore and I will lose it. Daddy comes into the room and tells her (yelling) that is enough, she quiets down and in 15 minutes, she is out like a light. AHHHHH, I am so glad this day is over. I feel so guilty about losing patience, I feel so guilty about the yelling I do, and sometimes the words I say. I know she is frustrated, and I am the adult. I have been dealing with this behavior for 2-1/2 years, and tonight I just want to quit. I feel like packing a bag and never coming home, moving to some exotic island, and live by myself forever. This misery needs no company. I know I can't, I have no choice. I love my daughter very much, and I do everything in my power to help her, and sometimes when you just have a bad day, it brings you down so much, it is hard to hold yourself up at the end of the day. It is not fair, my husband, is not here all day, and does not understand, and when Halley is down, then I have to give the rest of myself to him, he needs attention. It is not fair that I am grumpy, and have no more to give. Like I said, it had been a bad day!

A CHANCE TO VENT...

This may not be defined as an "essay", but more a moment to vent. I know there are alot of you out there who have had problems with speech therapists and pediatricians, and I am thinking about Halley's and it makes me so mad. Speech Therapists and Pediatricians are suppose to be there for you and your child, they are health care providers, meaning they should provide a service and when they do not, it is time to walk.
Halley was about 2-1/2 when she started seeing this pediatrician, I had heard so many good things about him, and he was so close to my house, I figured I would give him a try. I usually bring her in when she is sick, and have taken her to health dept. for all her shots. The first time I took her I mentioned to him that she was behind on her speech, and his reply was,"Well, as long as she is in speech therapy." I told him she was twice a week, and he said,"good", and ended the conversation there. I think that is the last time he has ever asked me again about her progress.
A few months later, I was concerned about her sleeping patterns, she does not sleep well. It takes her a very long time to fall asleep and wind down. This has been going on since she was about 2.3 years old. I can put her to bed, and it will be a minimum of 1 hour before she falls asleep(on a really good night), but mostly it is 2-3 hours before she falls asleep. She is up til 10-12, every night, and is up by 7-8. If she takes a nap, it is later. He told me,"some kids need less sleep than others." He gave me pamphlet on how to get her to behave and go to sleep. It seemed to me, more of a hyperactive problem, than a behavior problem. I let this go, and it is frustrating because she has such an active little body, she can hang on til the wee hours of the morning, and I find myself getting more frustrated with her, because she won't wind down.
The next time I took her in, was for behavior issues, her speech therapist also spoke to him about this, because she noticed the same thing. She would refuse to do anything she was told, having tantrums, and just being plain ugly. If she was told no, and was in her "out of control" mode, she would not calm down about it, she would not forget about it. He told me, "her behavior appears to be normal for her age group." Ok, I guess. I wanted him to give me a referral to a child psychologist, if not to help her, to help me help her. But I was sent away.
Everytime in between then and now, he has never asked me how her speech was coming along. Now the last time I took her in, I was called at home by her pre-k teacher, telling me she had an ear-ache. She had a cold for quite some time, about a month or more, so I figured she had a ear infection. One thing about Halley, is that she has a very high pain tolerance, and if she complains about pain, I believe her. I made an appt. and took her in the same day. I told him, that she was complaining that her throat hurt, her ears hurt and that under her arms hurt. He checked her ears, checked her temp., and that was it. He did not check her throat, under her arms or anything. He told me this, (and I quote), "The symptoms you brought her in for, were really kind of weak." I was livid. A couple of weeks later I took her in for the hearing and vision screening, that she was "too immature" to perform.
A pediatrician is suppose to be there to help me with my child, and he is suppose to be concerned about her well-being. I live in a very small town, and he actually makes house calls. At this time, I can't help but to think what an idiot he is. If he can't even read into her charts, and ask me how her speech is, well he can just kiss mine. I want a pediatrician who is concerned with her development. I am in the process of finding one now, but to think I have kept him for 2 years+....by doing this I can't help think that maybe had I done something sooner, maybe Halley would have received more help. I asked him for help on more than one occassion, I asked him for MRI's and CT scans, to verify that there was nothing more, I have asked for a child psychologist to help us out, and there is no response other than she is normal.
I know that there are many of you out there, who child has not been diagnosed yet either, and my advice to you, is get the answer, if one dr. does not seemed concerned, or can provide you with answers, then keep walking. My child is now 4-1/2 and has no diagnosis. She deserves more, and so do your children. Get the referrals, demand it. You and your insurance pays those drs. and they should provide a service to you, because all we want is for our KIDS to TALK BACK!