Being a parent, and doing it well, is one of the hardest jobs you will ever have. Those that have experienced it and lived to tell the tale and claim it was easy are either exceedingly blessed or far enough removed from the experience that they have forgotten the headaches, heartaches, and fear. It is important, exhausting, thankless work. But probably the most important undertaking of your life. You are raising future adults, citizens, and family members. Is there anything more important than that?
Parents of children with special needs have an added dimension of strain in an already challenging experience. If you are raising a child with special needs, you have probably read everything you can get your hands on about your child's condition or symptoms. You have read the latest research, the latest fads, the latest "cure" or therapy that promises miracles. If you are raising a child with special needs, you have probably come to the realization that no matter how much you read, nothing accurately describes your child and his/her condition because at the end of the day, he/she is a unique individual with a unique genetic make up and personality and disposition. When you have a child that fits no specific diagnosis, syndrome, or condition but instead displays symptoms of many different, yet interrelated diagnoses, there is an added dimension of challenge. Your rule book is unwritten. The directions were not included on your particular model.
If you've followed this blog for any amount of time, you know our challenge has always been meeting the needs of a child that has been diagnosed with global developmental delays, ADD, neurological impairment, gross motor and fine motor coordination disorders, expressive speech/language disorder, and disfluency. He has average intelligence but tests and performs on the very bottom level of average in the school setting, even with supports in place. He is HIGHLY social but has many autistic/high functioning spectrum behaviors/tendencies. Although Sensory Integration Disorder has not been formally recognized by the latest Diagnostic and Statistical Model of Mental Disorders, as a stand alone disorder, a SI Disorder would most accurately reflect our son's issues. One neurologist once described him as "straussy", after the research performed by Alfred Strauss on brain disorders and learning disabilities.
Our most challenging time of year is ALWAYS the start of a new school year. It's a transition. The month of July is mellow with little large group interaction, no defined timeframes, and I'm home consistently to provide full attention and assistance. Once August hits, I'm now focused on a new room full of little people that my son doesn't know, yet feels some jealousy towards. He now has daily interaction with lots of people, many of whom make him feel bad about himself. In addition, our fall schedule is beyond busy and has much more consistent, clearly defined timeframes that must be met. Transition and change is always hard for our son but this much transition with the added anxiety of social and educational expectations is especially challenging for him.
Having no clear "rule book" for parenting can make life interesting. If your child's behavior is causing you to feel frustrated, angry, or on the verge of "out of control", you are advised to be sure the child is in a safe place and give yourself a timeout to regain your composure. In our case, our son will not allow that. If he senses that you are upset, even if he is out of control, he will not leave you alone to regain control. When you are upset, he has an uncontrollable need to touch you and talk to you, even as he physically, mentally, and verbally spins in circles. For example, the other morning, our son woke up and nothing was working. His brain synapses were not firing correctly. He couldn't take his pills, brush his teeth, get breakfast, or complete a single step from beginning to end without abandoning the task, repeating the same nonsense phrases over and over, and crying. We needed him to take his pills so his brain could start engaging itself again but that simple task was out of his control. He could not complete that simple task. He was getting more and more emotional and explosive. The situation wasn't going anywhere. And our son wouldn't give me space to recoup. He compulsively needed to touch me, hug me, and repeat himself. I needed space. But he wouldn't let me have it. This was the moment when my husband or I typically step in and relieve the other so we can take a break and relieve our frustration from the moment. Unfortunately, my husband was already at work for the day. I was running solo.
I'd like to share something inspiring and tell you something amazing I did or something beautiful I said that made the moment better and solved the problem. But at the end of the day, I'm human. And I blew it. Big time.
It was nearly the end of the first full week of school. We had been teaching an extremely young group in an old, un-air conditioned brick building in 100 degree heat index, humid weather. I had spent weeks moving a classroom I didn't pack into a building that had been abandoned by the district a few years prior. We had ceiling leaks, poor electrical grids, mice, and limited access to the building prior to opening. I tried to stay positive, crack jokes, and keeping us going. My oldest was preparing for his senior year and the college application process had already started. Our community had flooded three times in the last month and my fire fighter husband had a scary close call on a water rescue call. He was rarely home, helping his community while our own home had water in our basement for the first time since it had been built. We had survived band camp, our yearly week long fundraiser for the fire company at a local fair, and our yearly weekend fundraiser for our fire company at our local festival. Marching band season is in full swing and I have two marching together this year. To say my plate is full is an understatement.
So when our son woke up, spinning and crying, and incapable of moving forward in even simple ways for the day, I lost it. I started yelling. I was demanding. I did all the things that I KNOW do not work when his brain is out of sync.
Earlier that month, I had received a major award from my employer in recognition of my work with young children. And all I could think as I heard myself doing all the wrong things with my own son was "Some award winning teacher. Yep. You're really amazing aren't you."
My oldest son, who was also very frustrated with his brother and his inability to get in sync, was able to take a breath, step back, then step in and re-engage him positively. He was the one who took the baby steps to start his brother's brain stepping in the right direction. He was the one who was able to step in and stop the downward spiral his brother was riding on. My seventeen year old son. Not me.
So... what's the take away here?
Special needs mom have special circumstances and special challenges but at the end of the day, they are still human. They are going to make mistakes. They are going to fail. All parents, even the good ones, do sometimes.
Our mistakes provide the opportunity to model humility. To model contriteness. To model how to apologize when you are wrong. To model how to re-connect with someone you love that you have had a disagreement with. Mistakes can have beautiful moments too. They don't feel that way but they do.
So, I sent my oldest off to school. My youngest and I slowly put our day back together, together. I took him to school. Then bawled the whole way to work. I re-fueled my soul from the energy of my classroom of beautiful, innocent, happy, little ones. Then I came home and finished the healing from the morning ugliness. That broken morning has led to some very open honest conversations between my son and I about the direction we need to start going in terms of him growing up, stepping up, and taking responsibility for himself, even when it's hard. It's allowed conversations about emotional boundaries and how we treat the ones we love, even when in crisis. The broken moment has led to some good moments. They don't feel beautiful but they may lead to beautiful moments eventually.
Although I felt like a complete failure as a mother that morning, I need to allow myself to have bad moments too. I'm human and I'm flawed. I'm going to fail.
Besides, I raised that amazing seventeen year old that stepped in and was able to walk through the ugly to his own beautiful moment. So I must not be a complete failure.
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