Monday, August 17, 2009

The Decision

I have read a few books where mother's discuss their traversal through the young years of dealing with their child's autism. Many of the books describe home based programs where the child was sent to a typical preschool with a privately hired one-on-one aid. This is what I wanted in my ideal (ideal within the confines of autism that is) world. I wanted a team of people to work with Zach at home, I wanted to sign him up for preschool and send him with one of the team. He would get some socialization, we could get a lot of one-on-one time where he could build up skills, his exposure to human petri dishes would be limited (that would be other children who would get him sick since he gets sick at the drop of a hat), I could see everything and learn, the diet would be adhered to and there would be no ostracizing based on different foods. It would be optimal, right?

Now the reality; people have lives outside of Zach and there are always these obstacles.

Issue number 1: therapists take days off. Zach has missed over 50 sessions since March because therapists took days off for various reasons. Are there people out there who don't take days off? I have yet to meet them. Consistency is a HUGE problem, day to day expectations are changed, Zach does not understand what is expected of him, there is diminished progress. All the schedule boards in the world don't seem to alleviate this.

Consistency also comes in the form of the therapists all being on the same page. And this brings up issue # 2. This is a difficult one too. We held weekly team meetings to go over questions/concerns and review progress and the upcoming week expectations. We had a log book that described, in brief, each individual session. We had program plans, we had a website. I attempted to videotape sessions - but not all the therapists were thrilled about this. Therapists started to come to me individually to discuss their concerns rather than voice them in the team meetings. I think that might have been the beginning of the end. I could no longer manage the group. They were not clicking organically and all the management efforts were not helping.

Issue #3 There was the issue of preschool - we tried (and miserably failed) potty training. Most preschools have a potty trained requirement for entry. Uugghh. This too, had given me me a lack of confidence in our efforts. If he just didn't get potty trained, that would have been one thing, but the resultant behavior of not eating or drinking for 3 days, not pooping for 3 days, and refusing sippy cups entirely really left a mark on me.

Issue #4 Then there was how to get him out of the house since we believe he was getting bored at being home and causing compliance issues. I started making phone calls and visits to find a room where our team could work with him. Library, church, where else? I am just not that resourceful and nothing I pursued was panning out. In fact, it seemed I was given a hard time everywhere I asked.

Issue # 5 - I am exhausted and functioning minimally. It is so hard to have so many people in and out of the house, to be attending to two young children, pay attention and record all that is going on, and then once the team leaves supposed to clean house, cook, do laundry, manage finances and house duties, and continue the tactics the therapist recommended throughout the rest of the day. I couldn't keep up. Ask my friends who likely feel abandoned by me. (Sorry...) I realized that I was spending 30 hours a week in therapy with Zach - unable to run errands, clean the house, make dinner, attend to Sophia, be normal in any way. I was exhausted and feeling terrible that I wasn't doing more, and more importantly, that Zach wasn't progressing more. One of the therapists remarked that the house was cleaner before I left my job. Ouch. Let that pass. Focus on what really matters: Why wasn't Zach progressing more?I have no life, and cannot handle the amount of work thrust at me. There are likely women out there who can - but just like I had to admit at age 16 that I wasn't supermodel material, I have to admit now that I am not uber-mom. I am barely even OK-mom.

Being that my background is extremely limited in the field of child development, I was having a hell of a time leading which is what I really needed to do. I just didn't have the confidence to make certain calls. I needed to motivate the team to feel compelled to make things work, put in the extra effort. But alas, I failed as a leader, and failed miserably. My depression had gotten to an all time low, just when people, the team that is, but mostly Zachary, needed me most. I could not compel people do do any of the things to make the team work. I tried, but it was over. I couldn't wallow in self pity for too long though, even though I feel like the worst mother ever because of this. I want to be a better mother so I still have to try.

I voiced my feelings to Steve who seemed surprised at all that I told him. He, too, wanted a home program for Zach. I realized he did not see the day-to-day of things and that the weekly meetings he did attend masked what was truly going on. Sure we talked about issues, even the ones mentioned behind closed doors, but did we really honestly address the issues? I have to laugh, because this felt so much like where I used to work and a Dilbert cartoon at that.

I am not blaming anyone else for this - it was my own doing. I didn't want to hurt people's feelings. I felt that if I mentioned some of these issues at the team meetings, those people who were responsible for some of the issues would take note and address it. What I didn't realize is that people are likely not aware that they are impacting (or not impacting for that matter) his progress the way they are. I needed to address it with the individuals.

I wasn't comfortable confronting team members individually - I didn't want to hurt feelings, afterall I was so grateful to have them with us in any capacity. I know that each of the women who are currently working with Zach are good people with terrific skills, and felt I lacked the expertise to tell them what they were doing was wrong or ineffective. I feel like I have a difficult time confronting without being abrasive. I didn't know how to address my concerns with the team as a whole, my feelings felt too raw. So I addressed them with the team members individually. I tried to see what they could offer me in terms of support - I was so desperate to get the home program working. They tried, but they could not make up for my inadequacies. It was one of the lowest points since Zach's ABA treatment began. I have yet to get out of the depression I feel at seeing how I could not make it work. I am just too tired, I feel so overwhelmed, and with limited resources.

Besides individual therapist issues, there were programmatic and strategic issues too like how to handle schedule lapses and Steve and my follow through of what therapists were teaching Zach. I think it would have been best if I could have gotten all the kinks worked out of our existing program - but it seemed like it was going to be such a huge effort with no guarantees. I had started looking around for new therapists - to replace Ali who would be leaving for school, and to sub in for the other therapists as needed - perhaps even replace one of the therapists and rid the team of the dissension. The county would have to get the therapist into contract.

Up until last week, I almost felt that Zach was given the worst mother ever. Then I ran into a cousin's wife who read a book my Mom passed on to her about a woman's struggle with getting her children with autism the appropriate treatment they needed, Let Me Hear Your Voice. We briefly discussed the book, and she made the comment that I needed to hear: "works great, if you have a lot of money."

When I looked back at all those women who wrote books on their home based programs I saw the gifts they were given that we were not. While I was working, money was not a huge concern. Now it is. Catherine Maurice, money was not mentioned as a concern at all. Therapists prices range from $20 to $95 an hour. And you are supposed to be getting 40 hours a week of this stuff. And this doesn't cover supplements, non-covered doctor's bills, special diet, resources, therapy toys, and various other incidentals. We have a limited income now that I am out of work, how do I determine what we spend our money on?

In other books, families were given money, had the help of family (grandmother's even learning to do therapy!) and one book, they actually went from a hefty six-figure income to bankruptcy. However, these books also had kids who lost their diagnosis. What would you do?

Spending all you have on this stuff seems to be the response I initially had that feeling, but then I looked at those baby blues of Sophia and realized that although Steve and I could manage OK with just the basic necessities, she would take the hit most of all. Is that right?

In the end, the decision was made to send Zach to school. We were pressed into a decision that seemed impossible to make. We consulted Yale, another mother whose son is slightly older, and our own therapists on the pros and cons of our options.

Zach wasn't progressing as I know he could, and this could be the change he needs. There will be consistency and oversight of the program. I can interject myself. I will be given some free time to, say, clean a toilet or two (yipee) . We will likely hire a private therapist to supplement and oversee what is happening.

I cannot believe I am sending my 2 year old to school. He will actually be in school longer than his 5 year old sister at kindergarten. I refused the bus, just couldn't do it. Sophia may be looking forward to it, but Zach would have no clue why I was plopping him on this vehicle without me. It hurts to think what he is going to feel (abandoned) when I drop him off for the first time.

God, I love him. I love both my kids so much. It shouldn't have to be this hard. I am so excited for Sophia - looking forward to something I know she is excited about. With Zach, I am terrified. What if this is another bad decision? What then?

And I will miss him. I never sent Sophia to school until she was 4. I love spending time with my kids - just hanging out at the house, the occasional playdate, going to the park, reading books. Why can't I have that? I am not working, so I will take advantage of the "free" time to get things going at the house, and maybe work on my skill set too. How could I have been a more effective with the team? Can I learn to run sessions with Zach? Trying to kick start the workshop for training pediatrician's about early diagnosis management. My goal is to get enough done while the kids are gone so that I can be more attentive to when they are here.

Seems like a plan - makes sense right? But my heart still aches at the thought of my baby boy going off to someone else's care. He's mine, why can't I handle this? Why does there have to be so much hurt? Why can't decisions be more obvious? Why does he have to have autism? Why can't it be someone else?

Answers: Life isn't fair and life aint easy. Off to a good cry.


Melissa H said...

My heart is aching because I know, I *remember* those feelings. All of them. In fact, I know that I wrote about exactly these things in 2006. Three years later, we have a different set of challenges but amazing progress that I didn't think was possible... *in spite* of what I did or didn't do right. I wish so much that I could throw you a line and pull you out of the murk. Zach *will* progress.
A suggestion about school: Conor was 3 when we sent him, but I still had the same fears and feelings about it. So, I contacted the school and asked that we please be able to come to the classroom *before* school began and meet the teacher, so that he could get familiar with the surroundings and a new person. On the first day of school, he ran right in.

Oh, and speaking as a friend? I do not feel abandoned by you; rather, I wish I could help *you* more.

This is a hard road but it does get easier, I promise.

Raising a Happy Child said...

I am coming from a very different place, but I believe strongly that you've made the right choice. I will write more to you via email on FB.

Niksmom said...

And a third opinion weighs in. LOL.
We put my son, Nik, in school when he was 2 1/2. WORST decision ever. We pulled him out a year and a half later (Sept 2006) and are now homeschooling him. We are NOT well-off. Quite the opposite. There is much that can be done and found for free to help our children.

There is a website you might want to check out: Rethinking Autism ( There are resources and support, ABA information and how-to videos. I found it through this blog (also woth reading!):

Anyway, my real point is that you don't have to be flush with cash to be able to have a home program for your son. You just have to be willing and able to think outside the box, be creative, and not afraid to ask for help. It's out there, I promise.