Imagine an army coming through the gates. Returning home after a long, tiring stint at war. Some battles were lost, but others were won. The soldiers are crying "Victory! Victory!" as they run into the arms of their loved ones, celebrating with family, friends and even strangers. The war is still happening, but major advancements have been made and the end is in sight.
This is kind of how I feel.
I have been doing the work of an entire army (or at least it feels like it) when it comes to getting Cole a solid education and therapies. I left the Special Needs Preschool building for the county last week wanting to grab anyone I could and just hug them, screaming, "I did it!". Fortunately for the unsuspecting strangers out there, no one was in the parking lot. So I just got in my car and drove home to pick up Cole and Brian so we could go to the pediatrician. Bummer.
The months and months (well, technically a year) of preparing to get Cole into pre-school and have a proper IEP has taken its toll on me. Emotionally and probably physically. I understand how important it is for him to get the right support at school to even give him a chance at a proper education. It is one of the main reasons that we made the move East.
I've got document after document. Letters, therapy notes, psychologist evals, medical records, and other mumbo jumbo that says my son needs a full time nurse, he needs special education, he needs this, he needs that. After all of the hullaballoo that we went through last time, this particular course of testing and meetings have made me go in with the utmost preparedness, ready to draw my guns and get them blazing in seconds if I came up against resistance. Last time I was prepared, but was not even given the chance to speak. I knew I could not be silenced again. Fortunately, I did not have to put up much of a fight this time around. I assembled enough information (or perhaps overwhelmed the committee with so much information) that they did not put up much dispute. Now, I didn't get everything that I wanted, but I was willing to take what I could get. It is
leaps and bounds ahead of where we would have been if we had stayed where we were.
Cole will be going to pre-school 5 days a week, starting in September. He would have only had 2 or 3 days a week in UT (IF we could have gotten him in). He will be there for 3 hours a day, and have transportation by bus. The school is only 3 blocks away! There are considerations built in for his light and temperature sensitivities. His behavioral issues. Communication goals. Participation and attention goals. I am very pleased with the outcome. He'll have Physical Therapy and Occupational Therapy (not enough, and no Speech...but I'll take it). The entire meeting, the committee took my suggestions and changed the IEP accordingly.
HUGE battle won: he will be there with a full time nurse, devoted specifically to him and his needs. I still have to go to a Medical Review Board to get our private duty nurses that we have at home able to come to school with him, but the county nurse and the director said that I am more than prepared. They feel that the board will grant this to me for continuum of care. They were kind of surprised to find out that I had already learned about the battle that was going to have to take place and that I was ready for it. See, normally a kid who needs nursing at school
has to have a nurse from an agency that has a contract with the district. The have only
rarely let in nurses from another agency. Otherwise, the school has to pay Medicaid for the hours, and a huge billing mess ensues. So, I see their point. However, my child is not cut and dried. I need him to be with nurses for an entire day that are familiar with him and all of his seizure types. All of his different rescue meds, which ones to give for which type of seizure. When to give them. To have one nurse for a couple of hours, then go to school for 3 hours with another nurse, who I can't really talk to (because they would be employed by the school), and then come back to another...just wouldn't work. So, HUGE victory on the horizon for me with nursing. Remember
this? You might understand why I wanted to hug complete strangers. I was so complimentary to all of the committee members. I let them know that I have been around the block so I could compare..and they did an awesome job!
Another huge battle: The didn't even question the dog. Taking a service dog into school can prove to be a real challenge for a lot of people. When they heard how trained our new friend is going to be, they just put it into the IEP and moved on. I'm certain that
this had something to do with it. Thank goodness for pioneers! We won't have those issues, since there will always be a nurse there to act as a handler and 4 Paws provides all of the proper certifications. Still, I'm sure it had something to do with the immediate acceptance that we were going to bring a service dog into school. We'll have to wait and see how it really goes in November, but I got a flat out, "No" last time.
There is more fighting ahead, more battles to be won...but the opposition is not as vicious this time around. My heart carries many battle scars, but it is very full today knowing that I have done something to help better Cole's life.
It took a lot of guts because we knew that there was going to be lots of people, noise, etc. We pre-loaded Cole with Valium and he did great! The way back home was more crowded than I have ever seen the metro, it reminded me of Hong Kong when everyone is going home from work. Just tuck your elbows in and hold on for dear life! Luckily, we found a little corner and Cole just acted oblivious to the chaos. Thank you, Valium!
After multiple discussions, we decided to try Topamax instead of Clobazam because they have similar properties and we could get it immediately. So far, so good I guess. We are still going to start the paperwork to get Clobazam, but it is taking 10-15 days to get it into the country. SO, we'll just have it as a back up in case the Topamax doesn't work out. This being said, I think we are going to stick to this med for at least a month...he is only on a very small dose and it seems to be making a difference.
Speaking of bravery, this week has had so many "firsts". Besides going on the metro and celebrating the 4th somewhere besides ID or UT, we started our nursing shifts! This has been such a great, weird, fun, stressful, tiring, wonderful, sad thing. I know...lots of emotions; but, it's the truth! Having to find someone that is qualified and then basically give them full trust in the very beginning of a relationship and counting on them to keep your child alive is strange. It takes bravery. It's also uncomfortable at times to realize that someone who is practically a stranger is sitting, awake in the next room while you sleep. Uncomfortable, yet comforting...so ironic. So we have had our first night nurse, our first day nurse and I've tried to map out a schedule. The list of things that I want to do in the next couple of weeks don't even really include fun stuff, it's totally boring things like organizing the pantry and cleaning the storage room! We'll be sure to throw in some fun stuff too :) It has been the first time that I can be in the house, but not have my eyes on Cole at all times. Weird, but a burden lifted. 
