I didn't write on my blog this summer. I wish I had some really exciting reason like we were traveling and living the life. I hesitate writing the truthfulness of how things were, because quite frankly, I wish to forget some of these moments. But in my (continued) effort to be completely honest about my journey as a mom to a child with complex medical and developmental issues, here it is: the truth.
The real reason I did not write is that L was home for the summer. I was looking forward to the summer home with her. I had great plans for outings and playdates and adventures to make memories. And we certainly had some outings and playdates and adventures.
But the truth is, it wasn't pure bliss. In fact, some days I was so out of patience that as soon as Ian walked through the door, I said "please, I don't want to see or hear her for the next 15 minutes." Saying that to Ian was embarrassing. It produced tremendous amounts of guilt. Carrying that guilt was awful: I was constantly questioning what kind of mother I was. I kept thinking, we are so incredibly blessed to have L here with us, alive and thriving, and I couldn't wait to be away from her? What kind of mom did that make me? What is wrong with me? All of these other moms are excited to have time with their children over the summer, and here I am, counting the days until she goes back to school.
Almost as soon as summer break started, I learned a lot of new information about my girl. L has transition issues - this, I already knew. I just didn't understand how severe that issue was until the summer started. She has difficulty regulating her emotions when there are transitions. Like getting her dressed, getting her out of the house, getting her to move from one activity to the next. I had not realized that her being in preschool 5 days a week was providing the stimulation (or something) that helped her regulate. So take away that interaction with other children, that structure, and she fell apart. She had tantrums countless times per day. And when I say tantrums, I mean complete meltdowns for about 1/2 hour. The tantrums typically centered around her not being able to tell me something - that she wanted to do it herself, or to do an activity a certain way, or that she wanted to do something else. I felt like I was walking on eggshells asking her ahead of any activity to prevent the tantrum, "would you like to open the package of [enter food] or do you want mama to do it? do you want to pour it in the bowl or mama? Do you want to put the blanket on the bed like this, by yourself or with help? You show me how you want to play! Where should mama sit?" If I did anything out of order, tantrum ensued. Nothing I said or did made a difference. The fact that this was happening multiple times per day was exhausting for both of us.
She was impossible to get to go anywhere. It was a fight to get her dressed which is saying something because under the best of circumstances she has trouble. The slightest thing would set her off and there was nothing to be done but hold her and wait for her to calm down. And when we would venture out, she was clingy, she was anxious at the thought of not being next to me. She didn't want me out of her sight. What had happened to my happy girl? What was going on?
About the same time that I theorized that her frustration was a result of not being in school, we started her in private interaction group therapy (which is ridiculously expensive) to help. Amazingly, the days that she had therapy, she had fewer tantrums. The days she had no therapy, we were back to those long and frustrating days. After a couple weeks of documenting her tantrums, I realized that there was a direct correlation to fewer meltdowns on therapy days. Clearly, L was craving that social piece.
In addition to private group therapy, she was approved for extended year services through her school. Unfortunately, with a diagnosis of "language delay," she only qualified for one hour twice per week. So clearly, that was not going to cut it. While it was helpful to know what she needed, it wasn't practical and we weren't financially able to provide therapy on a daily basis. So it meant most days I was just hoping to get through the day. Lots of days of calling Ian in tears. I was exhausted - mentally and physically. Even on therapy days, I couldn't leave her side at therapy (we tried, she cried the entire time).
To say I was excited for her to go back to school is an understatement. I wanted my happy girl back. I wanted her to have what she so desperately needs. Obviously, there were selfish reasons as well: I wanted to be able to work out and take care of myself. I wanted to be able to dedicate time to my own doctors appointments and job searching. She stopped napping in November of 2013 so her back at preschool is the only time I have to myself.
We are two weeks back into school and it is incredible to see L's change in demeanor. Yes, transitions are still difficult. Yes she has some tantrums. But she is pleasant the majority of the time. She is more independent. She isn't ready to scream her head off for the rest of the day because she didn't get her way or cannot tell me what she wants/needs. And when she does tantrum, the episode is much quicker and she gets back on track sooner.
This summer was a learning experience for all of us. We now know that L absolutely must have camp or school during the summer. She must have social interaction with other children multiple times per week. She must have structure and be encouraged to be away from her mama.
I want to add that yes, we did have some great memories and outings this summer. We had joy each and every day. It wasn't all bad and tantrums. But we certainly had a lot of it!
Now we know. And it's a new school year...thank God.