Patience is a virtue

Patience. That’s one trait I’ve always thought I possessed. I don't get easily aggravated or upset when things don't happen quickly. I fully understand that bringing about change takes time and this usually happens incrementally.

I’m quickly learning that life in the world of autism takes the word patience to a whole new level. The process takes time, support doesn't happen quickly, and once you actually begin services, progress moves very slowly.

It took over a year to get the diagnosis for Zayne. Once we received the diagnosis, we were given a long list of support he will need to receive to foster his growth: Occupational Therapy, Physical Therapy, Applied Behavioral Therapy, and Speech Therapy. We were also informed that we needed to get him a Evaluative Team Report (ETR) through his local school district in order to get him started into an educational program and formulate his Individual Education Plan (IEP). I've quickly learned that without this report, we can't send him to any educational program (public, private or a specialized Autism program) and if financial support is needed to help with school or therapies (because you know, this stuff is expensive) then this report is required before any program will begin talking to you.

Now four weeks post diagnosis, here is where we are:

Physical Therapy - We've had 4 PT sessions. Zayne has a hard time staying focused and responding to the task requested of him but his PT is really great at transitioning with him. Some days he struggles a bit more than others. We are learning the things that he can do well, working with him on the things he can't and I'm understanding the things he actually enjoys.

He does a good job catching a ball but not such a great job throwing it. This isn't because he doesn't know how to throw but because he never throws it directly to the person and instead throws it somewhere else. This was a learning moment for me. I previously thought this was him being defiant but watching him do the same thing each week with his PT helped me to understand that similar to not looking people in the eyes at times or not always responding when prompted, he responds similarly when throwing an item to a person.

Zayne has never been able to ride a bike either and this is something he has worked on during several sessions. They strap his feet into the pedals and he will actually make the motion with his foot strapped in. It was pretty neat to watch him do this, especially since he has never done this before. Below is a video of him doing this.

Zayne really liked swinging. This wasn't like a normal swing. It was like a padded punching bag with a solid platform on the bottom. He could sit on it and wrap his arms and legs around it as he swung. He seemed to calm down as he was swinging back and forth which was really great to see.

Occupational Therapy: We've also attended 5 OT sessions. We work on many different items including potential sensory issues he is facing. We're learning to cut, do puzzles, pick up items with tweezers and find matching items. We've tried a weighted blanket, vest and suit to calm him down but none of these have seemed to work.

One item that has worked a bit is a brush. His OT provided us with a soft bristled brush that we use to apply pressure to Zayne's back and/or arms when he's inconsolable. He has settled down several times while I was doing this.

Zayne is pretty good at puzzles and we have him doing them on a stability ball sometimes. So this is something we are going to try to incorporate into an every day activity.

Our last session was incredibly hard. Zayne was not responding to his OT or me very well. He started shrieking repetitively at one point, kept opening the door and running out, and even bit me a time or two (something that is a new behavior for him). Ms. Ashley and I agreed that we would try next week's session with just her and him to see if he responds differently.

Applied Behavioral Therapy: We're struggling to find a place to help Zayne in this area but continue to search for this. It seems that many of these programs are incorporated into the classroom at autism schools. Being located in more of a rural area like Mansfield makes this a little harder of a service to get as well but I'm continuing to work on my options with this one.

Speech Therapy: This is probably one of the areas Zayne needs the most support right now. To anyone who isn't around Zayne often, they would be surprised by this as he does talk well. However, he fails to communicate even basic needs (I'm hungry, Can I have this?, and etc.).

We've been on a waitlist for this since the beginning of August. I've called several times to check the status of this only to be informed that we are still on the waitlist.

School: Jake and I had every intention to homeschool our kids. It's something we've talked about for years. However, with Zayne's diagnosis and now knowing how much support he needs, we now realize that we are unable to support his education at home.

Zayne turned 5 in June so he could possibly start Kindergarten. I took him for a Kindergarten assessment and it lasted about 10 minutes before they said we shouldn't continue (Zayne couldn't focus, even after I had him sit on my lap). We were asked to come the next week for a preschool assessment.

The preschool assessment was broken up into two sections: an assessment where they talked to Zayne and a play-based assessment where they observed him interacting with other kids. Ion the initial one on one with Zayne, they noted that he was delayed in many areas. Our next step is to have a ETR meeting to discuss his IEP. We were informed that this would be scheduled sometime in October and he would not be able to begin school until this meeting is completed. I was also provided a stack of additional assessments to complete on him and return them back to the school before the meeting.

The items I've talked through above are a list of services he will receive now but I'm concerned he'll likely need additional therapies based on some of the other behaviors he is displaying presently.

Having patience is so HARD. As a parent, you want to do everything you can to help your child. We don't know how to appropriately respond when he is freaking out, when he's pushing his sister, breaking things, spitting and various behaviors he displays. When you have a child with Autism it is difficult separating which behaviors are due to his Autism and which are related to him being a 5 year old boy.

In addition, every autistic child responds differently to therapies and each has different challenges. There is no size fits all with autism, it's like trial by error so far.

All we can do right now is have more patience until we find the pieces that fit. It will inevitably take time to get this right and even after we figure out what works, we'll likely uncover another behavior needing addressed. I spoke to another mother with an autistic child recently and she said it was described to her a "peeling back an onion." Once you figure something out, there will be another layer that is exposed and you will learn to manage that layer.

So we wait, we hope, and we just work on this puzzle together.