Wednesday, January 29, 2014

Logistically Challenged

We are well on our way to a diagnosis yet I don't feel any better than I did before this whole thing started. It's less new, more complicated. We are getting Ham's test results from the psychologist on Tuesday (2/4). I can't say that I am worried or nervous as I feel like I already know the results because I am with Ham every day. I see him struggle with the things I take for granted. I see him failing to connect with the world around him. In a way I am at peace with this.

What I a currently a hot mess over is transportation and logistics. You see, I work five to six days a week from 8am to at least 5pm. The Hubs works five days a week from 7:30am to 4:30pm. It seems that the school system, therapists, ABA clinics, and pretty much everyone does not think that parents work. Our local school system offers preschool for kids with autism and developmental disabilities as well as speech delays starting at age three. This school starts at 8:30am and ends at 11:30am. If you notice, our schedules already conflict. Then there is therapy, we are looking into applied behavioral analysis (ABA) therapy as well as occupational therapy (OT) and possibly speech therapy (ST). These seem to be offered randomly throughout the week with little regard to working parents. We are now left with the burden of transporting our child from point A to point B while we are also supposed to be at our respective places of employment.

We are fortunate to have a supportive extended family who live very close. My mom helps out a lot, she takes Ham one day a week, and has agreed to help. The MIL is also very helpful but less available. She can take one day a week as she works. My mom does not work but has medical issues and also cares for her disabled mother. The Hubs and I have to be at work to pay the bills. So, we're left to wonder how on earth this is going to work out.

To make matters worse, or at least more complicated, Ham's current (very tolerant) daycare will not take him less than 21 hours per week and does not do half days. The preschool as well as various therapies will prevent us from meeting those requirements (we're barely meeting them now) and we will be without a daycare. Ham is not potty trained (not even close) and over the magical age of three when all children are apparently potty trained (according to daycare centers), so we are left with little to no options. I am beyond stressed about this. I wish I knew where to start. I could use some prayers, even a miracle if anyone has one to spare. 

Wednesday, January 15, 2014

The Beast

Ham had his first meeting with the evaluating psychologist. It went okay. It wasn't particularly informational or extraordinary. The doctor echoed most of the things I already thought/knew. She wasn't the nicest lady I've ever met or very good with difficult children but she was thorough. Ham has to return next week for a lengthy evaluation and several tests. I am not looking forward to a string of hours in a very quiet waiting room without wi-fi.

I've been working like a tornado trying to determine what we will be capable of providing for Ham when this whole evaluation period is over and we get a diagnosis. I've sat on hold with extremely unsympathetic insurance agents in a crowded restaurant, I've called every in network therapist, I've contacted the local school system, and I've reached out to as many spectrum moms as I can find. All this time and effort and I've got little to show for it. Everything seems just out of reach for me.

In a perfect world there would be one magic place where Autistic kids could go and get the things they need. It would be filled with gentle and patient therapists, caseworkers, and helpers. There would be OT, ST, PT, ABA, and every other acronym useful to Autistic kids. Parents would be involved and welcome to observe while children would be encouraged to grow in a safe environment. Sadly this magical place exists only in my dreams, perhaps they have one somewhere else in the world but sadly not here.

I am forced to attempt to piece together a program for my son with little knowledge of what he actually needs with little real guidance. I feel lost and overwhelmed. My husband doesn't want to talk about Autism anymore. I am alone against the beast that is Autism and the American healthcare system. God help me.

Wednesday, January 8, 2014

A is for Autism

With a heavy heart  I took Ham to a developmental pediatrician to get some answers. It is something that I have put off for exactly a year. I prayed that he would grow out of it and just be "normal," but in reality that is not possible. Ham's behavior has become a roadblock to his own growth and development.

I went armed with three years of medical records, a typed description of Ham's behavioral issues, and Ham's Nintendo 2DS (for distraction). Ham was on his worst behavior which was both a blessing and a curse. It was good for his doctor to be able to observe some of his behaviors and bad because of the looks he gets from other patients and the nurses. My heart breaks a little with each disapproving glance.

After much discussion and observation, Ham's doctor believes that he is on the spectrum and may have ADHD. For some time now I have suspected Autism or specifically Aspergers, but it does hurt to hear a professional say that about my son. Now Ham must be evaluated by a child psychologist that specializes in evaluating young children.

It may sound simple enough but there are long waiting lists for evaluations and therapy in my area. We are looking about two to four months at all of our options. I know that three months is nothing in the grand scheme of things, but it feels like an eternity when I see the way people treat Ham.

Today I became more than a mother. Today I became an advocate for my special needs son. I know it will be an uphill battle but I am ready.

Monday, January 6, 2014

Cabin Fever

If you're not lucky enough to live in Indiana, you probably won't have any idea what is going on here. It is snowy, like really really really snowy! Where I am we have a couple of feet on the ground with some scary tall drifts. As a result Ham, Hubs, and I are stuck at home. School and work was called off today as we are experiencing a "state of emergency" and temperatures in the range of -20. It's not pretty.

Ham is having issues with the schedule changes. Today was supposed to be his first day back from winter break after having two weeks off, but that was not the case. He is confused and antsy, we all are. The Hubs and I are trying our very best to maintain calm in the face of cabin fever. 

Poor Hubs and Ham have been stuck at home since Friday while I was lucky enough to work on Saturday before the storm hit. Now, we are all trying to stay occupied and not drive each other nuts. Ham is into everything and there have been many tantrums. I am doing my best to find things to quiet his fits and give me some peace. 

I had the great idea of going out for a pizza, because what did I have to lose? The only place within miles that was open today was our local pizza joint. It is literally less than a block away from our house, so I decided to make the short trek over to pick up a large cheese pizza. I made it there just fine and got my pizza, but that is where my luck ended. I soon found myself thoroughly stuck in a barely plowed corner. Eight different snow plows drove by before one good Samaritan stopped to plow me out. If he hadn't stopped I may still be there spinning my tires in the snow. 

Now I am definitely stuck inside, so I am trying to make the best of it and stay sane. 

This was a road, notice the lack of visible pavement 

And, I'm stuck...