Daddy Does Not Practice!

Every now and then something happens that reminds us how far Maizie has come and how much more we have to learn. Tonight we were doing some math work. It is possible that I had asked her to do too much school work today contributing to her impending melt down. I asked Joe if he would help Maizie with the work while I went to photocopy some papers. Joe agreed and sat down by Maizie.

When I came back upstairs Maizie was gradually melting down. No, I take that back...she was melting down big time! She began screaming, "Daddy does not practice! Daddy does not say the words!" I tried to explain that Daddy understands the work and can help. Eventually Maizie explained or rather yelled in desperation, "It can't be a different person!" Bingo! The two people that do 'sit down' work with her 90 percent of the time is her tutor and me. Not only that we have to use very specific language when we work with Maizie. We meet after tutoring and discuss what we are saying for certain concepts and how to teach them. If we do the math too differently from one another Maizie does not understand and becomes frustrated. After a while we gradually add in more terms to help her be more flexible. You might be wondering why I don't go over all of this information with Joe too. The truth is it takes too long and Maizie is usually too tired to do the work when Joe is around in the evenings. Joe does not have time to study the Lindamood Bell process like I do. Joe and Maizie do things that don't 'resemble' learning at all, like making a rocket or cooking. I need to accept that and leave well enough alone for now, I think.

Maizie continued crying and did something she has not done in months. Covered her body up with the couch cushion and refused to come out. I let her know that we now understood that she does not like changing the people who help her do school work. She began sobbing which lets me know that she accepts that I finally understand.

She then screamed, "The sun is burning me up!" I knew this meant that the living room light was hurting her eyes so I turned that down. She remained under the couch cushion until she suddenly threw it off screaming, "The sun is going to melt my vitamin. I can't take it! You always make me take it!" We have had numerous vitamin arguments before this so I agreed to look for a new vitamin (we have tried many vitamins, she hates them all) that she could tolerate. She continued to be furious and was reaching the point of no return quickly. I tried to give the evening medications to her and she became even angrier. I knew that a few minutes after her medications she would be much calmer and have less anxiety.

I told her again that we would not make her switch who helped her with school work and that we would change her vitamin. Slowly she peered up at me and began moving her hand towards the cup of water. I quickly put the most important medications in her mouth and she took them reluctantly. I told her we understood her and that we were sorry we did not see the changes that we threw upon her. She seemed relieved and took the rest of the medications.
I helped her up to bed and then she asked if she could stay up longer and make a card. I agreed and asked her for a big hug which she agreed to. Several minutes later she calls me up with a card to give Daddy. It says, "I'm sorry Dad. Forgive Me." She wrote it on a heart that she cut out and glued to a piece of paper. I took the card and told her that she did not do anything wrong. I have to reassure her that it is okay that these changes are hard for her and that until she is ready we will work through them little by little. I explained that Daddy loves her and knows that changes like that are hard for her. I had to make her understand that he does not take it personally. She says, "I know ma ma. Just give it to him...okay?" I promised I would and my heart cracked a tad bit more.

Today the tutor had told me that she thinks Maizie's ability to focus has decreased sharply in the last few weeks. I agreed. It was the tutors impression that Maizie is not wanting to work on difficult problems so she is avoiding the work. I did not agree with that. We had taken Maizie off of Strattera thinking it was not helping her focus. Sometimes you have to stop a medication to see that it is working. Apparently it was doing something for her. I had also noticed her not focusing as well with school work and even in playing games, with barbies or whatever. She has been more hyper and less likely to put her words together. Her melt downs have been increasing and my nerves are being shot earlier in the day. Another sign that I usually don't recognize right away. Granted, all of these areas are a struggle for her but in the last few weeks it had been worse.

Add in the increased seizures, a vacation and it is truly hard to tell if it is the medication. My gut tells me she needs the Strattera back so Joe went to pick up a new prescription of it tonight and since it is fast acting I should see an improvement quickly. If there is no change I will have to rethink the medication again. According to the Cleveland Clinic Strattera is the only good option for her low focusing struggles. We had tried other stimulant medications in the past and they caused all kinds of problems.

I know many people out there are against medications. I certainly do not fall into that category. We had tried many alternatives when Maizie was younger with no improvement. It was only when we stopped Maizie's seizures with medication and then eventually added in a stimulant that she was able to focus to learn at all. Some days I feel guilty for the medications she is on but mostly I feel thankful that we have the ability to pay for them and that they work for her. I think medications have to be thought out on an individual basis. There is not a one fits all method for children with difficulties like Maizie has. Especially since her condition is so rare we really have no one to make comparisons with. The closest we have for comparison is autism. She fits all the criteria for autism and yet her chromosome disorder plays a huge role in her seizures and physical struggles.

For Joe I think this is hard. He works hard all day and just wants to spend some quality time with Maizie. Often times we are dealing with a sleepy child who just needs to go to bed. I am sure that hits home for most parents. For Maizie though she takes a lot of her aggression and inability to hold it together out on Joe. I suppose this is because he can handle it. I don't know. Joe wanted to play some games and just hang out with Maizie tonight but that did not go as planned. When she gets this upset she will not even allow Joe near her. For some reason she can only handle one of us at that time and it is usually me. In some regards I feel like her melt down is my fault since I really wanted her to get a few more worksheets done in math. Maybe if I had not asked Joe to step in we would have finished it and she would have moved on to playing with Joe. Or I could have accepted what we had all ready accomplished for the day, instead I pushed for more. Possibly the night would have went much better. I am sure I will be having dreams about it tonight or before I fall asleep I will be debating the scenario in my head and how I need to chill and just go more with the flow when it comes to home school. I guess it is a learning process for me too.