Disclaimer: This is very personal, emotionally exposing blog to write. If you recognize yourself in any comments I mention, this is not meant to attack you or otherwise hurt you; this is a representative of life through our lens as parents to special needs children.
I remember the sinking feeling in my gut as I expressed my concern about our daughter’s behavior at two years old at a playdate with friends. My questions or comments of concern were met with “oh, my child is just like that”. This wasn’t the first or last time that would be the response from friends, acquaintances, or even strangers who didn’t know what else to say and believed this was the most helpful comment to my explanation of our life. With these responses, I found it wasn’t safe to express my fears, concerns, and need for acceptance even though my child in so many ways is not like others’ child (and in some ways is like others’ child). I don’t think I always dealt with these feelings of rejection the best. I withdrew most of the time and only shared where I absolutely knew it was safe to do so. I didn’t want to: 1) explain who we are and beg you to understand and 2) risk sounding like I am blowing it all out of proportion (i.e. being crazy). So, when Pastor Eric asked me to write this blog on parenting special needs kids, my response was, “Really, are you sure?” I would then have to confront all that causes me to barely post anything publicly on social media about my kids and I would have to be vulnerable. Eeeeek!
Let me share a summary of our kids by diagnoses. Ellen, 7 years old, is diagnosed with Autism Spectrum Disorder, Impulse Control Disorder, Attention Deficit Hyperactivity Disorder, Sensory Processing Disorder, and sleep issues. She is on medications and in three therapies a week to help with these special needs. Her Impulse Control Disorder encompasses her desire and obsessive nature to pull out all of her hair (from on top of her head, eye lashes, eye brows, her arms, legs, our arms, etc.). She is a baldy, almost like when she was a baby, but this is much harder for most of us to accept because of her age. These diagnoses don’t encompass who she is though…though she hurts emotionally and physically in her body (thus the picking and pulling), she is artistic and sees beauty in the world. Thought she has made comments that she has wanted to die or wished she was never born, she delights in the creation through insects (particularly caterpillars) and other animals. She enjoys learning but the social environment of school is stressful and over stimulating for her; she nearly had to leave her school of two years this year because of how she responds in that difficult environment and that not all know how to help her cope. She loves math, reading, sewing and cooking, gardening, and collecting everything and anything. She sees the world in a unique ways and she is a gift to all of us.
Ian, five years old, was drug and alcohol exposed in utero. Whether because of genetics or the drug exposure or both, he struggles with big emotions of anger that he doesn’t know how to handle. He lashes out at all of us who love him with yelling, arguing, aggression, stealing, lying, etc. He is diagnosed with Disruptive Behavior Disorder and Sensory Processing Disorder; he is on medication for the anger. He has hearing loss in both ears due to drug exposure in utero causing reflux into his ear drums, which caused many ear infections. He loves learning and school, but his attitude with teachers and need to be the center of attention, gets in the way of him succeeding there much of the time. We spend a lot of time at Ian’s school attempting to help him cooperate and obey so he can succeed there. Again, this is not all that is Ian. He is artistic, intelligent, caring (when he is not clouded with anger), entertaining, creative, and imaginative.
So, back to the title of this blog…
Our children are different than most kids around us in some very big ways. Due to their behaviors and needs, they qualify for services and programs that we must all participate in. Both children have or had behavioral health counseling, psychiatrist for medication monitoring, Sensory Therapy, and some in-home and school services. These began when Ellen was four and have been non-stop. Ellen recently qualified for Developmental Disabilities and Arizona Long-Term Care Services. To qualify for these services, which we/they need, they have to display severe behavior that last longer in duration than a “normal kid”. These services take a lot from all of us as far as involvement, follow-through after the appointments, transportation, and loss of work hours. These services help them be able to learn skills to be able to better cope with their environment. We enroll them in these to assist them in better outcomes of functioning for the long-term, while we teach their hearts to reach for Jesus. We often have to decide who is more needy for the service as we have limited time just like every family.
With these special needs, our children need a specific kind of parenting. Ian needs firm boundaries because he is a black and white thinker and his anger can get violent. Ellen also needs particular structure and boundaries. The difficult thing about this is when we have shared how we have to parent, we don’t always get a kind response. The last time I shared on Facebook something about parenting, I was told that shaving Ellen’s hair to help her stop pulling (researched from reading and coaching from other families who have dealt with pulling) was “abusive”. I felt the hurt, the loneliness, and misunderstanding of who I am, but I didn’t own this statement as it was untrue. There are many things that we must do as parents to monitor and keep the children safe that would surprise others. However, we accept that parenting special needs children is going to look different; what is difficult to accept is how the world responds to us as different.
So, why do we love our children fiercely, labor on, believe in what we do, and recruit other families to foster and adopt children who potentially have special needs? I cling to God in what He has said to me. He gave me Joshua 1:9 a few years ago; “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” He sent us. He had a hand in the fact that we faced infertility but still wanted to be parents. He gave us a heart for children who could not be loved by their biological parents in a healthy way. We see God’s anguish over hurting kids and want to be part of His love and redemption of them. I can’t walk away from this call on my life anymore than I can stop breathing. And He does not desert us…or our children.