Just Another Chapter

Last night, I said to myself, "If I wrote a book, it would be titled 'Prisoner in My Own Life.'" And here we are, at yet another chapter.

Since Saturday, we have been fighting yet another battle with Catherine. Up all night, screaming. Aggressive with not only her family, but also with those that have come over to play with her. It's like when we have Good Catherine, she is amazing. When we have Bad Catherine, I cringe.

It has been a war zone, AGAIN. Constantly trying to keep her happy while balancing everything else. If you could have seen my kitchen on Saturday, you would have been appalled. I was appalled. And overwhelmed. Like everything else that day, it was a mess, and was the epitome of exactly how I was feeling. Out of place, disorganized, and chaotic. And the only way to survive is to take it one minute at a time.

If I wanted to, I could write all about the past four days. But it would be exactly like the last blog post I wrote. About strapping on my combat boots and going to war. How James is acting out because Catherine is misbehaving. How there have been more times than I can count where we have "lost" Drew somewhere in the house or the backyard because we are dealing with Catherine's behavior issues.

So instead, I will write about her Special Education meeting today, and the path forward we hope to take. Only because I feel like if I rehash the past four days, and particularly the past 24 hours, I will end up going mad.

So we met with Catherine's Speech Language Pathologist (SLP), the school's SLP, her Early Access Coordinator (who we love and we are so sad to see go). We also met with the school nurse, Catherine's potential special education teacher, who happens to be James' current preschool teacher. How lucky are we that we will have one of  the kindest, most dedicated teachers I have ever met not only teach James, but also have Catherine for a couple of years. We are truly lucky in that regard. We are also so lucky for Catherine to have been working with Heather (EAC) and Dani (current SLP), as we feel they have been fighting for Catherine too.

It was surreal to be a general education teacher sitting in on an IEP (individualized education plan) as the parent this time. This time I wasn't just nodding my head and following along, but I was engaged in the conversation about my own daughter. Again, we are so thankful that we have THIS team of professionals in Catherine's corner.

Catherine will have curb-to-curb transportation, meaning she will ride a short bus. I almost have to laugh at this little girl in this big bus, but she will absolutely love every second of it. There will be an aid on the bus to help load her from Christy's (daycare) and the aid will walk her into preschool. She will go to preschool 4 days a week from 8:30-11:30 and she will get specialized services throughout the morning. Mostly one-on-one with the special education teacher for her cognitive delay and one-on-one with the school's SLP. She will then get back on a bus with the aid and be dropped back off at Christy's. I may have a lot of issues with the way our government is run, and the way public schools sometimes function, but in this regard, Southeast Polk has their stuff together. For that, I am so thankful.

I took the full day off work, just so that I could spend the day concentrating on Catherine. Since my last update two months ago, we have been diligently making sure she doesn't get any artificial flavors either, and have been trying to stay away from salicylates, which are acids derived from plants. I have put in a call to the doctor to refer us to a pediatric nutritionist who specializes in food intolerances, who can hopefully help us make sure Catherine is getting the nutrition she needs, as well as identify any other intolerances she might have that allergy testing would miss. This is what I suspect happened with the milk protein allergy, and why she tested positive at one doctor and not at the allergist. Because it's more of an intolerance.

I have learned that food allergies and intolerances manifest themselves in several different ways. For some kids, it's behavioral, and for some, it's a rash. Either way, the further we get from allowing Catherine to have dyes and artificial flavors/preservatives, the more convinced I am that this is what is happening.

If anyone out there is reading this, and you are the praying type, here is what we need prayers for:

1) For a nutritionist to guide us into further investigation of what Catherine truly reacts to.
2) For us, to make sure we continue to be patient and love her with everything we have
3) For James, who is also hurting from this as a big brother.
4) For her special education "family" who will continue to work with Catherine and make suggestions for her. Help them guide her to be the best Catherine she can be.
5) For Catherine. You can tell she does not like feeling this way. She is easily frustrated with herself and as Christy's daughter put it before, it seems like she is angry with herself all the time. With the removal of dyes and flavors from her diet, she has been much happier, and more loving. I hope this continues.

Onward...again.