Our littles began ABA therapy about six months ago. Their care has been disrupted numerous times due to high turn-over with our RBTs, site directors, BCBAs and FAs, various long-term illnesses from those serving our kids, and an entire month's quarantine when Covid hit our home. This high turn-over has by far been the most difficult interference. If there's one (of many) thing(s) you should know about autism, consistency is key. One site director cheerfully tried to tell me all of these constant changes are a great lesson in ABA in themselves. I cheerfully replied if she really believes so, she's in the wrong business. This tired, fed-up mom is D-O-N-E. I'm no longer pulling punches. If it's in my head, chances are good it's coming out my mouth.
We are experiencing yet another disturbance to Ezra's services, as his RBT quit last week with only 24 hours notice (I'm learning this is the norm). This is not the first time, and unfortunately, I doubt it will be the last. I'm at my wit's end and quite frankly, finding it difficult to not feel angry and even betrayed. To be fair, this particular RBT was with Ezra from the beginning, and he made amazing progress with her. But right now, I'm struggling deeply with how she handled her decision and my child's needs. To say the least, we were caught off guard. Less than two weeks before she gave her notice, she sat in my kitchen and lied to me about her dedication to my son. She gave her employer 5 days notice, but she gave the child--MY child--she had formed a bond with only 24 hours. I understand there are times and reasons a person must move on from a job, but it's the way in which the moving-on has been done each time that has left me feeling less than charitable. We are the kind of people who become attached easily, especially when someone makes a difference in our children's lives. I'm just wondering what my children are being taught about these attachments specifically, and about people in general, with the revolving door which has been created by these situations. I do my best to spin it positively for my kids--"It's time for her to help other children the way she helped us!" "We were so fortunate to have her while we did!"--and I do my best to keep my opinions between myself and my husband, but kids are smart and pick up on more than we often realize.
My children don't understand the constant flux of strangers passing in and out of our home. Week to week, things are subject to change and it's confusing for them. It's downright maddening for me. We have been subjected to the seeming whims of those who have pledged their commitment to my children without warning or cautions, just up-ended one day to the next.
As their mom, it is my job to advocate for my kids. Besides Shawn, I am the only one who knows what is best for our children. We have to anticipate their needs. We are their voices. We are the only help they have at this moment. One way in which we advocate for our children is to provide examples for, and teach them how to take over our jobs as their own advocate and voice when they are adults. I know of many parents who continually bang their heads up against the wall, desperately begging for help for their children. They are often left with no other choice but to hire lawyers and advocates to battle school systems and insurance companies. One part of advocating means screening who we allow in our home and in their lives. A big part of advocating for my kids happened when we began homeschooling. I could no longer fight the school system; watching our kids blossom with what we're able to provide has been absolutely magnificent. Another big part of advocating (as well as homeschooling) means actually providing what, and who they need to become the best versions of themselves. Sometimes I get tired of being warm and welcoming, I am exhausted from having to play nice, but I keep it up because these people provide very necessary services for my children. Just because I plaster a smile on my face does not I'm weak. It does not mean I won't hesitate to take the hard road for my children's needs. And it certainly doesn't mean I'm not wondering, "And how long will you last," with each new person who walks into our home. This revolving door doesn't help my trust issues.
I've had a lot of time to think since our latest tech gave her notice last week. I have so many thoughts I want you to know, and questions I want you to consider before you enter into any field working with children.
Please, before you begin working with any child, but specifically kids with special needs, ask yourself if you are worthy of being welcomed into their home and family. Jobs like this are very personal and relational. You become part of the family while you are here because that's just how it works best. Yes, the family and children need the services you are providing, but they also need (and deserve) consistency and dependability. They deserve someone who will be responsible in every way. This family will need to be able to rely on you for their child's needs and progress. You are being given a gift with this job: Our trust. Parents of kids with special needs do not trust easily, and it takes a lot for us to allow a person into our children's lives. Are you worthy of such trust?
Can you truly commit to the child, to a regular schedule, to the necessary work and continuing education, and if there comes a time you are no longer able to commit, can you give at the very least, the respectful, courteous two weeks notice (also, I don't care who you are, how old you and what your job is, GIVE TWO WEEKS NOTICE at the minimum. It's just the proper, considerate thing to do)? When you do leave, will you take the time to help my children understand, or do you plan on only doing what's best and easiest for yourself? Are you able to tell the parent you are in this for the long haul--and truly mean it?
Are you able to maturely communicate your own needs and plans (far in enough in advance)? Are you able to communicate in person, or via phone when in person isn't possible, not through texts or emails (barring emergencies)?
How do you feel about the monotony of collecting data, daily paperwork and insurance reports? What about traveling to and from your client's home, the time spent on the road and the mileage on your car?
Do you fully understand what your commitment involves? You are not a babysitter. You are here to work. You are here to make my children work. You are here to help me make sure they are able to cope within the world--not conform to it--to be able to work within it, because the world certainly isn't going to work with them. You are here to keep up with energetic 12 yr old and 6 yr old boys. These are not dogs in need of a 20 minute walk who would probably be okay if you forget or skip a day. These are children learning to form relationships and how to cope in a world of neurotypicals. As parents, we rely on you to be here.
Are you able to separate your own bad day, and the child's bad day, from the child and the work session? Can you continue responding in a positive manner, understanding the child is not giving you a hard time, but instead, is having a hard time? How are you with temper tantrums and meltdowns--and do you know the difference? Do you know when to call it a day with work and move on to something else? Can you be calm enough to give my child a few minutes to collect himself, but strong enough to let him know he is still required to complete his task? Can you easily adapt to changing moods, changing needs and changing seasons in a child's life on a minute-to-minute basis? Do you have good people skills? Are you able to offer the flexibility my children need but do not have themselves? Are you the role model you'd want for your own children?
Do you understand this is a job you take because you love kids and want to help them be the best version of themselves? It's not a job to cure your boredom, nor pad your wallet (trust me, this job will not pad your wallet). Another thing to consider: Are you knowledgeable about children in general and their diagnoses specifically? There is on the job training, but there are things you absolutely need to know before entering into a relationship with these children.
These questions, and many I haven't put here, are what you should be asking yourself before entering into any kind of job contract involving children. I'm asking you to do some serious soul-searching. If you pray, do that as well. Ask questions--ask your friends, your family, your previous bosses and coworkers, fellow students, your teachers and professors--ask them the hard questions you may not want the answers to because the family who needs you does want, and deserves those answers. We are asking for honesty, reliability, consistency and trustworthiness. We are asking you to give our kids the best of yourself, day in and day out, even when you're tired, even on the days you don't think you have anymore to give. Perhaps especially, on those days you are stretched to your thinnest.
