Being a parent can be very isolating, especially if you have a special needs child. (I struggle with using that term, special needs, but that is another blog entry...)
Last week, I was reading questions posted on a great web site for parents with children with attention issues and learning disabilities, understood.org, and one really struck home.
The person who wrote it had a son (like me), who had been diagnosed early with some developmental delays and focus issues (like my son), and she was feeling alone, and anxious, and scared, and said there wasn't anyone who really understood how she felt. Family tried, but they weren't going through the same thing she was. Her husband and son seemed to just roll with the punches, but she was really struggling to do the same.
That could have been me writing that.
I consider myself very fortunate now. I have several friends who have children with learning disabilities, sensory processing issues, attention and focus issues, and other "disabilities." We can talk to each other about our frustrations, big and small, and help each other through the tough times. But I completely understand the feeling of being alone, because that wasn't the case during my son's first few years of life. I spent a long time searching for other "special needs" moms who would understand because they were going through similar struggles. Finding your community isn't always easy, or fast, especially when all of your focus is on your child.
I am hoping that by writing this today, I will help someone else know that there is support out there, even if you have to search a while to find it. There are other parents going through the same thing you are. You will find your tribe.
In his eight years of life, my son has seen (some multiple times): a pediatrician, an ENT (ear infections, checking for hearing loss, allergies), a physical therapist (gross motor delays), a pediatric orthopedist (gross motor delays, fitting for braces and special shoes), a pediatric neurologist (migraines), an occupational therapist (fine and gross motor delays and sensory processing disorder) a pediatric GI specialist (for GI bleeding; he had three episodes between ages 4 and 5, and we still don't know why) and a geneticist (after the first bleeding episode, the GI doctor suggested we have genetic testing done).
After all that, we now know that he has a genetic anomaly that explains all but the bleeding episodes (we still have no answer for why those occurred). We have a diagnosis that makes it easy for my son to get extra help at school, which is fabulous. But all of that is terribly hard to talk about, even with understanding friends and family.
All of this started when I put my three-month old baby in daycare, and went back to work. He immediately got an ear infection, and the fluid never drained out for four months. Our kid wasn't happy at day care, and I'm sure all of the ear infections was part of that, but we felt it was more than that. Call it mother's intuition, God's whisper in my ear, whatever you want, but I knew that I wasn't meant to be working at that moment, and I felt I lost friends because of it. They didn't understand why I didn't just have the tubes put in, and go back to work. They didn't understand how stressful it is to have a child not meeting his milestones and not knowing why.
I know there are parents whose kids have worse problems, and still both work and cope with all of the appointments, therapy visits, sick days and stress, but I could not have been one of them. I felt like I would not have been an effective worker or an effective parent if I had been working outside the home during those first few years.
But that was SO very isolating. I had friends. But they all worked. I met other stay-at-home moms. But none became close friends (at least those first few years), close enough to share all of the struggles we were going through. And believe me, it is no fun to go to a baby play date with moms you don't know very well, and see your child lagging far behind the others in development. You feel the need to constantly explain what is going on with your child, without feeling like you are oversharing. That is not to mention the depression you feel because you don't have a good answer to what is going on with your child.
So where did I meet my group of moms whose sons have SPD, ADHD, and other learning disabilities? Amazingly enough, at his preschool. Some were teachers there and some were parents of his schoolmates. We found each other slowly, somewhat by chance, and by being brave enough to talk about it at preschool, church, soccer practice, children's library story times, Kindermusik, The Little Gym, and other activities.
I also am a sharer by nature (obviously). I don't feel my child's issues are anything to be ashamed of, so I tell others a snippet (my son has some gross and fine motor delays and focus issues is my standard sentence). And I am surprised by how many other parents respond with the struggles their child is having that are similar to ours. You slowly develop a community, someone you can email or text or message, "Is this normal or SPD?" "Do your child have problems with transitions?" "What works in your house at homework time?" or whatever else you have questions about.
You still will feel alone. You still will feel that sadness when other kids can do what your child can't, like kick a ball, or jump over a box, or go down a slide. You will quietly rejoice when your child DOES do those things (because my son did, eventually, reach his milestones, but much later than other kids), and share those accomplishments with friends who understand, either because they've been there themselves, or they've been there with you for the struggle.
Many of my friends have "neurotypical" children who have not faced the same challenges my son has. That's not to say their kids don't face their own challenges; we all have things we struggle with.
So while my best friends may not understand exactly what it means to have a son who struggles with balance and coordination, they know enough of our story to understand my excitement when he stepped up onto a parking barrier, then from that to the sidewalk, without even thinking about it. This is NOT something a typical mom celebrates. This is not a typical milestone. But for my son, it was a huge deal because stepping up onto something narrow, then stepping off of it onto a sidewalk without falling was not something he could have done even a year ago.
Yet, I realize daily that parents of "normal" or "neurotypical" kids simply don't understand what it really feels like to have a child with delays, just like a parent with a healthy kid cannot understand what it feels like to have a child with cancer, or diabetes, or cerebral palsy. I'm not saying we don't try to understand how each other feel, but we can't really know, not unless it happens to us, You need friends who are on the same journey you are, even if you have the best friends in the world already (and I do!).
I am fortunate to have my "tribe," both those with "normal" kids and those with kids with special needs. I am fortunate that both my family and my husband's family are helpful, loving and accepting. I am fortunate that I have had the freedom to not work outside the home, and be there for my son when he needs me. I am fortunate that I am involved with my church and a volunteer organization, which give me outlets for my creativity, and something that feeds my soul and recharges me.
But some part of me will always feel alone, and scared, and unsure of what to do to help my son with his latest challenge. That will never go away. But I feel more in control now that I know I can count on my friends. I hope that all moms (and dads) of children facing challenges find the support and love they need, and someone who really understands and can make them feel less alone.
