Thursday, April 13, 2017

Autism Awareness Month - Day 13 Our Story Part 5

If you are just joining me, head over to the first 4 parts of our story to catch up to where we are at right now.

Part 1
Part 2
Part 3
Part 4

Photo Credit
Decisions, decisions, decisions. If I thought it was hectic before Autism, it was triple that now. We had to figure out how to find a developmental pediatrician, meds, therapies, and wort of all school.

I started with the doctor. That seemed the most logical choice. I looked online and my husband and I found a child study center that seemed to have good ratings and also took our insurance. We made an appointment, took Charlie Brown in, and spent hours working with the DP. We came out knowing what we knew before, he definitely had Autism. Now we just had the formal diagnosis and a piece of paper stating that fact.

Second was the meds aspect. My husband and I discussed it and neither one of us wanted our very young child on the medication that the Neurologist prescribed. I tossed the piece of paper. We knew we could always get a new script if we changed our minds. But he was just so young.

During all of this time we had our second son and wow, what a whirlwind that turned into. With his issues from his second day of life until then, we were wiped out. Our brains were far, far, far from fully functioning, and we were tired from our older son's constant needs on top of his new brother's constant needs.

Here's where that comes into play: our decision, even before we were married, was to home educate any kids we had. We talked about it a lot before we said "I do" and had talked about it a lot while trying to have children. But with Autism thrown in the mix, we were told by our Neurologist he needed PPCD (public school preschool for special needs children). We were told this is what the next step was. I cried as I let go of the dream we had for our kids. My husband was so disappointed. But, we called the school to figure out what we needed to do to start this process. We started hearing terms like IDEA, FAPE, IEP, PPCD, and the list goes on. We learned that a medical diagnosis is not the same as an educational diagnosis and we would have to go through a lot of testing for our son during this process. We signed the papers, bought him a little backpack, school supplies, a cute little jacket, and lunchbox, and I walked him into his class on that first day hating every minute of it. Oh the teacher was kind with a sweet smile greeting him at eye level. The rooms were cute and welcoming. The other kids were excited for the new kid that had just arrived. The cubby he would use had his picture on it and his name. It wasn't that. It was that my dream and plan to educate him myself was shot out the window. I was confused. God had given me this desire only to know, before the desire was there, that it would be ripped away. Why even tell us to do this when you know it won't happen?

We went through the testing (by the way, he had Autism - LOL), had our ARD, and moved forward with school. Each day I took him to class, each day after lunch I picked him up from his little class. I would ask him what he did in school, he had no clue how to answer me due to his Autism. I watched him in class and it was fine but not like most think of when they dream of their child going to school I wasn't pleased with everything they did, neither was my husband, but what could we do? It wasn't like they were hurting him, being mean to him, or doing anything unethical. So, we just dealt with it.

Then, one day, I picked him up from school, put him in his car seat, started the 5 minute drive home, and he was different. He stared straight ahead, wouldn't respond to me at all (he didn't respond like a typical 4 year old, but he did respond to me all the time), and was just off.

Many years before I met my husband I had worked in a day care pilot program designed by Easter Seals. We were an inclusive daycare with children that had medical needs, special needs, and those who had no extra needs at all. The concept was to allow these kids, from birth forward, to come together in a daycare setting so that by the time they reached school age, special needs children were nothing new and everyone would see each other as just buddies. You wouldn't see the kid in the wheelchair, you would see Joe, your friend since infancy. Also, since we were in the Easter Seals facility, the children with any type of special needs could receive their therapies on-site with minimal disruption to their day and parents didn't have to take off work to help get them to appointments.

All of that is to say, I had seen this before. I will never forget that small boy that first showed me the face I was seeing in my son right at that moment. I was seeing an absence seizure (Petit Mal). I was scared. He had never had this issue before. I made an immediate call to my husband and then his doctor. We took him in and he referred us back to his Neurologist who, in turn, called for an EEG.


We went back to school and, a few days later, there it was again after he was done with school. This time I wasn't the only one who saw it happen. We called his Neurologist who had us come see him immediately. He suggested that the stress from school was causing these. Take him back, let's do more testing, we will figure this out.

On the way home my brain couldn't stop thinking. Stress from school ... causing seizures ... take him back.

We got home, I put him down for a nap, put our younger son down for a nap, and asked my husband to sit with me on the sofa. I was terrified to say what I was about to say, but knew if I waited I wouldn't be brave enough to get it out. I hmm'd and haa'd for quite a while before I finally said, "I know the doctor said we needed to put him in PPCD. I know we wanted to homeschool him and were told we couldn't. But, how could we do any worse? And, what if we could do better for him?"

Well, that was all my husband needed to hear. He had been thinking the same thing but was afraid to put more stress on me with all I was dealing with helping him and with our younger son's issues. He said "pull him out". That's just what I did. I left him at home the next day, almost skipped into the office at the school and nearly sang the words "I am here to withdraw my son from PPCD". I had a few things to sign since it was not the typical withdraw. We did have an IEP and such. They sent someone to get his things from his classroom while I signed a few forms and that was it. They told me they would always be there if we needed anything, and I walked out the front door with more joy in my heart that I had in months.

I came home, took one look at my son, and thought "now what".

Join me for the last part of our story where we jump into the "now what" of our situation.


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