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January 18, 2003
*I don't think I will start a PT diary for two reasons. I don't have time to keep up with more than one diary and I don't think it would happen before I'm halfway through this pregnancy. With that said, expect the entries to get even longer. :o)
BEHAVIOR MODIFICATION 1/18/03
I mentioned that I took Jaida to a psychology clinic that treats behavior issues. I fully expected them to offer me some tips on redirection of offensive behavior and maybe a little reassurance. What I got was totally different. Well, not totally. But I did get a lot more than I expected.
I took Jaida for the IQ testing last Tuesday and we went back on Thursday for the results and our first session with Dr. M. I asked the secretary how long I should plan to be there for the IQ testing. She said depending on the child, it may take an hour to an hour and a half. I thought I would be able to sit in, but the examiner stopped me as I was gathering my purse and coat. “I only need her,” she said with a smile. I sat back down and tried to read my magazine. About 30 minutes later, Jaida came bounding out with a Kit Kat in her hand and a grin from ear to ear. The examiner asked if it was okay for her to have it and I said no. Jaida frowned and lowered her head which really made me sad. If only she had asked me before she gave it to Jaida. I could have asked for bubble gum or a lollipop instead.
On the day of the follow up, I had to take Jarod back to the doctor about his cough. His appointment time was so close to Jaida’s I had to take him with us. I hoped with all my might that they would not destroy the waiting area. Thankfully we only spent about 10 minutes waiting. When we got into Dr. M’s office, I tried to distract Jarod with a bag of corn chips. He wanted to rifle through my purse and play with my cell phone. I tried to talk over him as he cradled the phone to his ear and carried out a very loud pretend conversation. He even cackled several times for good measure. He watches Mom on the phone and she must laugh a lot.
Jaida was also in rare form and she was hard to control. I thought she was showing Dr. M a perfect example of what I was talking about. She wouldn’t stay seated and she picked up things off his desk. I asked her to sit down several times but she ignored me. Jarod was up soon and they both crawled around on the floor and under the wing back chair in the corner. Dr. M acted as if he wasn’t bothered as he read out the results. “Her IQ is on the low end of normal,” he began. “There were some low scores in simple arithmetic which is surprising. For her age, that part should have been higher. But there are a lot of ups and downs in the range, that’s why it averaged out where it did.” I noticed he didn’t give me a number. Since I have no idea what kind of tests were performed, I don’t know if he was feeding me some bull or not.
Dr. M sat back in his chair and asked, “So what specific problems brought you here?” I wanted to point at my child acting like a snake on the floor at his feet and say, “Can’t you guess?” I just explained about her lack of respect for my authority, the blatant misbehaving and the inappropriate behavior at school and home. Dr. M kept pressing for details. At that moment, Jaida was bouncing on both feet, Tigger-style, as Jarod tried to copy her. I threw out my hand, palm up, and said, “She’s like this all the time. If I say, ‘don’t give that to Jarod,’ she completely ignores me and may hand him anything from a knife to a glass off the counter.” Dr. M didn’t seem concerned. In his quiet voice, he said, “Four year olds tend to have poor judgment.” I was getting irritated and the kids were riding my nerves like nails on a chalk board. I kept trying to explain, but it was hard to describe unless you actually witness it.
In the span of about 20 minutes, they had emptied my wallet and Jaida was lining my credit cards, Sam’s card, gas cards, library card and video rental cards in a neat row on the side table by the loveseat. Jarod had actually called somebody from the phonebook stored in my phone until I took it away and then he got in on the card thing. I gave up on making them behave. I was nearly in tears because I was one of those people other parents talk about in stores. “You know she should really get better control over those kids.” “That one is too big to act like that.” “It’s a shame some people don’t have the guts to parent their kids.” “All they need is a good a$$ whipping.” Need I say more?
Dr. M began to explain that if I had not brought Jaida’s reports from all her evaluations, he wouldn’t have put a label on her. He said it would be hard to distinguish her from any other child her age. At first, I was taken aback. Was this another person telling me she was completely normal and I was overreacting? I know he didn’t just say what I think I heard. I refuse to pay these outrageous prices to be patted on the head and sent on my way again. Maybe I should let him take her home for a few days. I wonder if his opinions will change then.
I said nothing for a minute to let his words sink in. I felt something in me release and I started talking to nobody in particular. “I guess this is just something I have to put up with and there is no answer. Our house is like chaos in a bottle every night and it won’t get any better. Maybe I’m the one that needs therapy and not her.” I said all this as I tried to put my purse back together. “Maybe what I really need is a vacation…without them,” I lamented half under my breath. Dr. M unlaced his fingers and said, “Well, that’s not a bad idea. I think all moms need to have one night a week and one weekend a month alone.” He said it as I was thinking it, “Most of the time when I say that, moms tell me it’s not going to happen.” “Your role is important and you have to take some time for yourself as well,” he continued.
Just then, Jaida got mad at Jarod for some reason and shoved him down and a kick landed in his chest. I rushed from the loveseat to restrain her and Jarod tried to hit her back. I told Dr. M that fights were a frequent occurrence in our house. He suggested time outs with her face to the corner whenever she got physical. He stated that she was behaving normally and nothing he saw was out of the ordinary. I wasn’t sure about this method but I was willing to try it. Facing a corner for a few minutes isn’t as physically negative as spanking, which Steve does without hesitation. That is where we disagree in our parenting methods. I tend to drag out my pleas for obedience until I get mad and start screaming. That usually draws Steve into the room to see what the problem is. Dr. M also said we would need to create a calm mood in the house every night. No TV blaring during dinner and soft lighting. Do I want to get her to behave or am I trying to hypnotize her? I just nodded and consoled Jarod.
Dr. M tried to get Jaida to sit down but her butt never actually hit the seat. She was back at his desk asking questions about his son’s picture and picking up a Play-Doh sculpture to inquire where he got it. He told her his son made it for him, as office decoration. Jaida kept asking what that meant. He tried to explain as he asked her to sit again. Jaida was oblivious to his request until he made her look at him and comply. He admitted that hyperactivity was worse in the late afternoons. Jarod was freaking out when I tried to make him sit on my lap. Dr. M said that to Jarod it probably felt like we had been in the room for three days instead of 30 minutes. He asked if Jarod had taken a nap that afternoon. I told him he had but he wasn’t accustomed to holding still, not to mention he was sick.
Dr. M said our time was up and we should come back in a month. We prepared to leave and he showed me where to pay the bill. Jarod kept running away and Jaida said she would get him. When they didn’t come back, I told the lady at the desk to excuse me for a minute. I found them in the hall knocking on a door. Jaida was laughing much too loud and Jarod was screeching. I made them come back with me and before I could finish writing my check, they were off again. The lady looked a little perturbed as I dashed off again to retrieve my wayward children. She even tried to talk to them. “You have to stay here with Mommy and be quiet. Other people are having their therapy.” They were off like a shot, laughing all the way. I said to hell with it and finished my check. Then I found them in an empty room playing with a scale. I have never been so embarrassed in my life. I practically sprinted to the car. It was definitely a Calgon moment.
ESTATE PLANNING FOR PARENTS OF SPECIAL NEEDS KIDS
A few months back, Megan (formerly of Babies Today) wrote about an accident she had that made her think about reviewing her plans for her and Jerry’s untimely passing. She stressed the importance of making a will and setting up trusts for her children’s educations. Her entry really got me thinking and I started to gather information on trusts. Years ago, I read the book 10 Steps to Financial Freedom by Suze Orman. I knew I wanted to set up a trust for Jaida. Due to her special needs, we won’t know until she’s 18 if she’ll be able to live on her own. All negativity aside, I think we should plan for assisted living in the event it becomes necessary.
One day while I was waiting for Jarod at OT, I found a box books published by Easter Seals of Indiana on the subject of special needs estate planning. They were free so I took one home and read it from cover to cover. There were several websites to locate financial planners and attorneys. I searched until I found someone that seemed right and he offered a free initial consultation. I made an appointment for the last Friday of our vacation.
I gathered up our life insurance policies and last pay stubs for 2002 and set out across town for the meeting. Mr. M met me at the door and offered me coffee or water. He showed me into the conference room and then he got me a glass of water. I told him a little about our situation and then Mr. M asked what I wanted to do right away. I sheepishly admitted that we had no wills and that bothered me most. Then I told him about the trust for Jaida. He stressed the importance of creating wills ASAP and then looking into a trust. He said he could refer me to an attorney friend that worked closely with him at workshops on estate planning and had experience with special needs trusts.
We talked about who I would want as guardian and trustee. He made lists on his dry-erase board and I made notes about what I would discuss with Steve later on. He gave me an overview of the steps the state would take if we died without wills and I got more nervous by the second. I had been nagging Steve about this for years, since Jaida was born to be exact, but we had yet to do it. I was more determined than ever to get our plans in order and get some closure on this issue. Mr. M and I spent about an hour talking and then we wrapped up the meeting. As I prepared to go, he asked me to refer any fiends that were looking to invest or start portfolios and he gave me his card and the attorney’s.
As I was putting on my coat, he said that God had given me my children for a reason and he thought I was doing a great job with my babies. My heart swelled with pride and I thanked him for his time. I assured him he had been helpful and I would be making an appointment with his friend on Monday morning. I could tell he was moved by my story and instead of shaking my hand; he opened his arms and gave me a hug. He wished me well and walked me to the door. I left feeling very happy.
I met with the attorney, Mr. K, this past Tuesday. He seemed very knowledgeable and helpful. He gave me two sets of questionnaires for Steve and me to fill out. One set dealt with basic will information and the other was more for estate planning. After we complete them, I have to call him back and make an appointment to have the wills drafted. He did say a trust wasn’t truly necessary at this point. Instead we can put wording in the will that will create a trust in the event we both pass away while the children are minors or Jaida requires assistance as an adult.
Mr. M had given me his best guess about the cost of the wills and trust. He said the wills would start at around $200-$300 and about $1000-$1500 for the trust. It turned out the wills are going to cost $650 each and if we add a living will/health care proxy, that’s another $75 each. Maybe the trust clauses are the reason for the cost; I haven’t been will shopping lately so I don’t have anything to compare it to. I thought about calling my in-laws estate attorney to get her costs for a comparison. But I would rather use someone that does this every day and knows how the special needs laws work.
When I gave Steve the prices, he said, “Are you crazy? We can go online and create a will.” I gently reminded him that self-written wills are not legally binding in Alabama. Besides, we’re not buying a used car and you get what you pay for. The wording and intent have to be just right for the will to be carried out smoothly. Now if I could just get him to finish his questionnaire!
DID I JUST SHOOT MYSELF IN THE FOOT?
After the last meeting I had to try and get my requests made to the school system, I was advised to write a letter to the director of special education for our county. She hasn’t been very eager to help me before and I wrote the state director instead. I discussed all this with Donna at SEAC and she agreed with me. She told me to send copies to the attorney I spoke with and the county director. After I sent the letters, the attorney called me in a huff one afternoon. I was shocked by what she said.
In her usual annoyed tone she said, “I just got a copy of a letter from you and I have no idea what it’s about. I’m getting this cold and I can’t remember what we talked about at your last visit.” I was confused but I tried to explain about the county director until she cut me off. “The county is one thing, but the state is an entirely different matter. I thought when you left here; we were going to file for a due process hearing.” I reminded her that she had told me we would do it at the end of January after we gave them time to do the right thing. I told her that I felt it wasn’t going to happen so I decided, on the advice of SEAC to write the state director. She was very irritated, “If I’m going to be involved you have to consult me before you do something like this. The state will do an inquiry internally and that could take four to six months.” I sighed heavily and didn’t really know what to say. She continued on, “If we had filed for a due process hearing, we could have gotten a date within 45 days.”
She went on to say that I had the option of canceling any process the state offered me and going ahead with the due process hearing. She said to call her when I decided what I wanted to do. I was already tired and not feeling too peachy. It was close to quitting time and I vegged out the rest of the day. That night, I went home and barely moved. I took to my bed and watched Jaida play her Fisher Price farm game on the computer. Finally, I got up and made Jaida some dinner and baked her some bread while I choked down a hamburger on whole wheat. If the weight of that wasn’t enough, Mom started in with ‘I’ll move out so the baby can have my room’ again. Needless to say, I did not sleep well that night.
LAMBCHOP’S FIRST PRENATAL APPOINTMENT
I was very excited to see my OB and my favorite nurse, Sherry, again. While she did my chart (she cheated and copied most of it from last time) I told her the story of Lambchop’s conception. She clapped her hands and said, “Oh, this is a God baby, my favorite kind! I’m so happy for you! You were so much fun last time. I can’t wait to see what you have!” Dr. D came in and we made jokes about Steve getting his ‘tubes tied’ so we won’t have anymore for sure. I had mentioned at my six week checkup after Jarod that Steve was planning to get a vasectomy.
After the perfunctory pap and pelvic exam he got serious. We talked about the risks associated with my B/P and my life in general. Sherry had noted in my chart that Jaida had been diagnosed with autism since my last visit and he asked about her function level. I also told him that Jarod was having some of the same texture and speech issues that Jaida had and I wondered if it was genetic. Dr. D told me his nephew had autism and his was pretty severe. We talked about the diet, supplements, causes, genetic vs. triggered and he said his nephew had been adopted so they had no idea about the cause. Dr. D offered to give me a referral to a genetic counselor later on if I was interested and I told him I was.
We talked about my depression and the drug Effexor that I take. Dr. D said that since I was taking it when I got pregnant the baby had already been exposed. He said he wasn’t in favor of stopping a drug at the risk of the mother’s mental health. He felt that it was more important for my moods to stay even and for me to be happy. He looked up my blood pressure medicine and decided it was fine as well. Needless to say I will be monitoring my B/P more closely at home. Dr. D said he wants me to have an ultrasound to check the size and date next week. Then he wrote an order for my blood work and a special test because of my B/P problems and wished me well as he left. I went downstairs to the lab and was shocked to see the tech take out SIX vials. I was so happy I had drunk plenty of water that day.
The entire practice participates in the Enfamil Family Beginnings program so I got a diaper bag of samples when I left and another copy of What to Expect When You’re Expecting. As I walked through the waiting room on my way out, I got lots of smiles and knowing glances. I passed some employees on their way back from lunch in the parking lot and one of them congratulated me. I felt so special and I’m sure it showed. My assistant Michelle told me several times this week that I’m glowing already. I think my hair is more lush and shiny like it was during Jaida’s pregnancy too. I feel beautiful, like a fertility goddess or something. I hope this lasts, as well as the lack of morning sickness.
A CUTE JAROD STORY
My Jarod is one sweet little boy. On weekend mornings he will climb into bed with me and be content to watch TV and eat corn chips while I doze. He only wants to share my covers and pillow. During the day he will stop what he’s doing and walk over to me. I look down at his smiling face and he says, “Ont kiss.” I obediently give him my cheek and he will press his lips to my face and then go on about his business. Mom says he does it with her too. Sometimes he says, “Hug,” while holding out his arms. It makes me melt on the inside. Everybody he meets comments on his pleasant personality. The fact that he is as cute as a button probably helps too. I love this child to pieces and I feel so guilty that our bond is stronger. For the first time, I’m worried about loving another child as much. If Lambchop is anything like Jarod, I don’t think it will be hard.
Until next time,
Kim, Jaida, Jarod & Lambchop
PS~ How many recognized my tagline as the beginning of The Beverly Hillbillies theme song? Yep, I'm warped.
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