Not required to complete the work BUT...

When I was in high school, I learned this as a song and even back then it meant something to me.  Now, when I find myself in overwhelmed mode, I will start to hum the tune in my head and it reminds me that it is okay to take a step back BUT once rested, it is time to take action again.


I've been asked by various people, including parents with younger children on the autism spectrum, if life with RJC has gotten easier with time. I always muddle through a response that probably makes me sound like I'm an alien.  It is just not a simple answer.


Life has changed significantly for us over the years. The hopes we had for RJC then are not the hopes we have now. The expectations we had for had RJC then are not the expectations we have now. The energy level we, as parents, had then is not the energy level we have now.


THEN:  it was about getting through the day with everyone physically safe.
We worried about RJC's safety because she had great fine and gross motor skills but no sense of danger and not enough language for us to communicate danger. She would bolt - and she was fast. Really fast.

• The fear of her getting hit by a car was a real one. Almost happened when we were at my cousin's wedding but I managed to grab her by the ponytail.
• The fear of her getting out of our house unsupervised was a real one (she once climbed out our window at 4 am in a rain storm...she wanted to play with her bowling set). We had our windows nailed shut and put in central air. We alerted the fire department to this.
• The fear of her seriously hurting herself or somebody else when in the midst of a tantrum was always on our mind. Leaving her with a babysitter or waiting for that darn phone call from school made us edgy and it was difficult to enjoy our time, even if she wasn't with us.  On the positive side, we have been incredibly lucky with the caretakers we've had for her. Always calm in the midst of her difficult behaviors.
• The fear of somebody calling the police because they thought we were hurting her while we were in public and she was screaming and flailing, usually due to her lack of ability to communicate or understand. We used to carry business cards around with us to give people information on autism for this very purpose.

NOW:  We still worry about her physical safety but it's a different kind of worry and we have acquired some techniques that help us with these situations.

• We still worry about the traffic issue but she is definitely better about staying with us when we are crossing streets or in parking lots. We specifically taught her, through ABA (applied behavior analysis) how to stay with us in public places. She is now fine about holding our hand and her bolting only occurs when she is very upset. We have also learned not to take her anyplace if we know she is already upset.
• We still worry about her getting out unsupervised. We now have an alarm that is hooked up to the police and fire departments. Our windows are no longer nailed shut. She has the skill to play on her iPad independently and it keeps her busy for long periods of time. At this point it is her preferred activity so staying inside is fine with her.
• We still worry that she can hurt herself or others. This has not changed, however the incidences of these behaviors have declined significantly. It is still a worry because we can never be sure what may trigger an incident.
• We still worry that somebody will call the police because they thought we were hurting her while we were in public and she was screaming and flailing. On the positive side (in a weird sort of way) more people are aware of autism and what behaviors are associated with it. A quick explanation is all that is needed - no need for handing out business cards. I'd also like to think that more of those associated with the police and fire departments are aware of autism.

THEN:  We were worried about what skills she would be able to learn that would help her with daily living skills and would help her hold a job.

• We worried that she would never read or be able to do simple math.
• We worried that she would never get through a day without a major tantrum that included hitting, screaming, and breaking things.
• We worried that she would never gain functional communication skills.

NOW: We are still worried about these issues because though she has progressed significantly, she is still very lacking in these areas.

• She can read and do simple math. Her ability to read the words vs. her ability to comprehend are two very different things. She is a great sight reader and once she has learned a word she knows the word. Comprehension is limited. She does best with written, meaningful instructions and she still likes toddler/preschool stories. She remembers her multiplication tables and will use her skills as necessary but in her day-to-day life these opportunities don't pop up much.
• Her tantrums are no longer daily. Phew.                                                                      On the other hand, we seem to see clusters of days where near-tantrums (if not full blown ones) occur. This is such a problem when it comes to being out and about in the community, let alone holding a job. It is difficult to know when or why these will occur so it's always questionable when we are out with her or out by ourselves. We do still have fantastic caregivers but in truth, we can't help but to feel edgy when we are out by ourselves. I know I glance at my phone too often to be sure I haven't missed an important text and we usually plan our outings so that we are not terribly far away.  In summary, this issue still greatly affects our marriage in terms of our alone time or time with our friends.
• She has definitely gained functional communication skills. This has taken years and years of hard and consistent work by her teachers and other professionals who worked with her and with us. We still rely heavily on a BCBA (Board Certified Behavior Analyst) who comes to our home and is available to us via phone and email. We continue to work on this issue and it will be a lifetime issue that we can never give up on. Ever. Bottom line is, the more she communicates, the less agitation and anxiety, the less behaviors.

The biggest area, where the worry is significantly greater now than it was when she was younger, has to do with her future. When she was younger, it was easy to be hopeful. We were naïve and uninformed about how the real world worked in terms of benefits, options for care, transportation issues...the list goes on. It is impossible to explain, in a short and concise paragraph, how this worry is by far the most complex and at this time in our lives and in hers, the most significant.


THEN:  We were worried about her future.

• We could not imagine how she would ever function without us and we wanted to give her all the skills she needed to function independently.
• We assumed a group home type setting would be available when she needed it and that there would be choices of where she'd live and with whom she'd live.
• We wanted to be sure she had work skills. She did great at school in her workshop setting and assumed we would find this type of paid work for her as an adult.

NOW: We worry constantly and endlessly about her future.  It keeps me up at night. I talk about it with friends, I research various options, I have joined our state's Regional Advisory Council, I email and call politicians.

• We know she will function without us if we find the right setting. She does well for two weeks at overnight camp and she connects with people when she is comfortable. She has more daily living skills and we continue to work with her BCBA to teach her what we can. Just the other day we worked on moving the laundry to the dryer.
• A group home setting may or may not be the best one for her. It remains to be seen. Certainly we can no longer assume that one will be available when she needs it or that there would be choices of where she'd live and with whom she'd live.  We also do not assume that Social Security or Medicaid will be available. We have to figure out something just in the case. This is probably the biggest negative change for us. We never realized how complicated the adult system is and how incredibly precarious it is. Just getting information is difficult, let alone the mounds of paperwork involved.
• We were so proud of the work skills she acquired in school but for her, they did not translate to the adult world. In school they could understand and handle her complex behaviors. The real world does not. In fact, they are scared for liability issues. Getting group supported employment opportunities is incredibly difficult for many issues, including political ones. I would have to write pages and pages to discuss this. Suffice to say, this is another area of huge challenges.

Hopefully you have made it through this entire blog post. Now, go back to the top quote and read it again, with this information in mind. This is how we live. We have tons of work to do in order to get our ducks in a row when it comes to RJC's future. We will never be done. One issue will be resolved and three others will come up. For me, at some point I will get overwhelmed and feel hopeless and helpless. I'll come to a standstill.  Paperwork will stare up at me from my dresser. I will drive my husband crazy spewing out my fears without allowing him to console me. I cannot listen to reason. I will want to eat chocolate and ice cream and watch mindless television. But in the end, this is my responsibility as her mom. I am the woman she counts on and looks to for her safety and her future. So I put on my big girl pants and back at it I go. I find an energy I did not think I had I plug away. I lean on my husband and together we find a new article, a new committee, a new skill we want to work on.


We know we will never complete the work - but we will always, always do the work. We may need a rest but we will never give up.