“I don’t know how you do it!”
When you’re a single parent of a special-needs child, your partnered friends of typical children will say that, over and over again (with great enthusiasm). I never know how to respond. On the one hand it’s a compliment, but part of me wonders if they are they throwing salt over their shoulder and thanking the gods that they are neither single nor the parent of a special-needs child. The simple answer is that you “do it” because, well, what else would you do? The bonus to being a single parent of a special-needs child is that despite the challenges, it is incredibly rewarding. Kind of like you managed to launch the Normandy Invasion all on your own.
Getting the special-needs news.
My daughter, Eliza, was born at 26 weeks and 4 days, weighing 1 pound, 4 ounces (to put this in perspective she was about the size of a small bottle of water). From the day Eliza was born I knew I was going to be the parent of a child with some kind of special need. The unknown was what the needs would be, would they resolve or would they be lifelong special needs. Not having a third trimester in utero causes a whole bunch of things to go awry and despite the mantra of some organizations that “support” parents of premature children, they don’t all magically “catch up” by the age of two. Eliza is now nine and is in an integrated class, with a paraprofessional to assist her and she still receives occupational therapy, physical therapy and speech therapy. To get to this point Eliza spent 100 days in the NICU, has had over 5,000 hours of various therapies and her medical needs are attended to by eight different specialists. But if you saw her in the playground, you’d just see a wonderful child having a grand time.
Other single parents of special needs kids are more blindsided by their child’s delay or disability. Some delays, disorders or disabilities didn’t show up until early infancy, the toddler years or in some cases, not until the kids are school age.
Regardless of how or when you became aware that you had been inducted into this select group of parents, there are a few pieces of advice that universally apply:
Take a deep breath.
(Okay, it is going to take lots of deep breaths or possibly you may need to be reminded to actually breathe). When your child is first diagnosed you will realize that there is no partner in the room that you can look to and say “what should we do?” because there is no we. It is just you. You may be surrounded by family and friends (or not) but at the end of the day, the decisions are yours alone. The good thing about making the decisions on your own is that you don’t have to deal with another parent who may think that a procedure, therapy or evaluation is unnecessary. You are also spared the resentment that inevitably arises if you are the parent who attends to most of your child’s daily needs. My partnered friends in the land of special needs have to work harder to maintain their relationship, so there is a hidden bonus to having to make all the decisions on your own.
Avoid Dr. Google.
When my daughter was born and gravely ill, I decided that “Dr. Google” would be my decision-making partner. Not the best of ideas I have ever had. In seven years of partnering with Dr. Google I have come to realize that no one publishes a study that concludes with “Hey, this all turned out pretty okay!” So until you are a wee bit further down the special needs highway, try to avoid Dr. Google as your decision making partner. The internet is flush with websites, blogs, studies and support groups for just about every special need. Some offer up helpful advice, others offer up platitudes and some are downright depressing. Medical studies are the most difficult to decipher. It is important to remember that virtually anyone can publish a “study.” The results of a particular study may be alarming, but then on closer examination you realize the study was done on 36 children in a remote area of Bali, so likely not the best “study.” With some practice though you can find out about new therapies or treatment that may not be known to your child’s medical providers which might be worth pursuing.
Be prepared for platitudes.
Friends and family will, with all great intentions, tell you things like “you’re never given more than you can handle” or “things happen for a reason.” Really? My stock answer over the years has become that if people are not given more than they can handle, then why do we have fully booked mental hospitals? I would get angry with these platitudes or the all-knowing sentiment that “everything will be just fine.” Since I saw no one with a crystal ball, I pretty much summarily dismissed these comments. It has taken a long time for me to realize it, but the friends and family who made these comments simply did not know what else to say and they really did think they were offering up helpful or kind wisdom.
Find at least one person you can talk to.
Since you have no partner to complain to about these inane comments, find the friend who says, “Well, this sucks” and complain to that person. That person may not be walking in your shoes but at least they are rolling their eyeballs with you about the platitudes.
Make yourself a map.
Once you’ve gotten over the initial shock of your child’s special-needs status, you now have to figure out how to navigate new worlds. Instead of a handful of well-baby check-ups each year, you may have to navigate multiple specialists, Early Intervention, more than a few therapists, and in later years the education system. In Eliza’s first year of life at home she had an average of four medical appointments each month and an average of nine hours of physical therapy, occupational therapy and speech therapy each week. In the perfect two-parent household, one parent often becomes a stay-at-home parent to manage the ever growing list of doctors and therapists. As a single parent you likely do not have the luxury of quitting your job so that you can attend to all of this. So what to do? What helped me was getting a really unattractive and enormous whiteboard that I mounted to the front door. I drew a monthly calendar and listed every appointment and therapy session.
Learn the art of defensive scheduling.
Depending upon the modifications you can make to your work schedule (start later in the morning, leave early, take an unpaid day once a month, work 4 longer days instead of a typical 5 day work week, win the lottery) you will need to schedule medical appointments around your schedule and often schedule multiple appointments for the same day (this will often require sucking up to the medical office secretary or occasionally begging). If your child has multiple specialists, I preferred one-stop shopping and had all of the specialists at the same hospital.
Insist on clear communication.
Since you won’t be able to attend every therapy session (unless you win the previously mentioned lottery) insist that the therapists use a communication notebook to record comments about each session so you don’t have to decipher what happened from the nanny or sitter. I set up a private Yahoo Group that Eliza’s therapists all joined and we could all post comments and questions and it was enormously helpful and alleviated some of the guilt that I felt in not being at every therapy session.
Pat yourself on the back.
Once you have achieved a level of organization that the NASA launch team would be in awe of, you will inevitably meet some partnered stay-at-home parent who will tell you that she (it is usually a woman who says this) made the hard decision to quit her job and stay home since it was best for her special needs child. This will invariably deflate your sense of accomplishment since it implies you are not doing the best for your child. But the thing you need to remember is that you have achieved something great because, on your own you have managed to not only love, feed, clothe and house your child, but you have managed to attend to all of those extraordinary things that your special needs child requires to succeed. This thought may not alleviate all of the guilt you might feel by not being there for every therapy session, but you can feel smug that you did all of this by yourself (and there is nothing wrong with feeling a bit smug now and again).
Find a village to help you.
Some members of the village you thought you were part of before you became a special needs parent may not be too welcoming. Much like the parents throwing salt over their shoulders while in the same breath telling you they don’t know how you do it, some members of the village may distance themselves from you. If you’ve had a difficult pregnancy or your child’s special needs were apparent at birth or shortly thereafter, you may find that your pregnant friends want to avoid you like the plague. It is hurtful, but I suspect they just don’t want to be reminded that they too may not have the perfect water birth in the woods with a doula under a full moon and a prefect child. Give them time. The good villagers will return.
Connect with other special-needs parents.
Your village will expand to include new friends you never would have met, but for your child’s special needs. These are people who understand what it is like to raise a special needs child alone. You should fill your village with people who celebrate your child’s milestones (no matter how delayed) and rejoice with you when your child no longer needs oxygen at home, rolls over for the first time at thirteen months, first talks at three or finally has the fine motor function to stick her finger in her nose (which isn’t as easy to do as one would think).
Remember to take care of you.
Often lost in all of the special care your child requires is you. My biggest failing was, and is, not taking some time for myself. It can be exhausting raising a typical child alone. Raising a special needs child alone can deplete your reserves to a critical level. Finding time isn’t the easiest thing to do. If you can save a few hours a week or month by buying everything online for delivery to your home, do it. If someone nebulously offers to watch your child, respond immediately with a date and time. If someone offers to do something for you (cook, walk your dog, help plan a birthday party, put a crib together or get your car inspected) assume they mean it and take them up on the offer. People do want to help but most of the time they don’t know what you need so don’t be shy about speaking up.
Rejoice in your child every single day.
The rewards of raising a special needs child as a single parent is that the two of you have done this together, that you have made the hard decisions on your own, that you have made the right decisions on your own and that you have a beautiful child who will explore the world with you. Eliza is a wonderful artist, not your average Crayola-loving kid, but a child who will debate over using oil pastels or ebony pencils when planning her work. Eliza is currently inspired by Georgia O’Keeffe and wants to learn everything she can about the artist, where she lived, the materials she used, how large her canvases are. This child, who was not predicted to survive, who was given slim chances of leading an average life, who has worked so hard to achieve things we take for granted, like walking and talking, looked at me as she lay in bed in one night, slapped her forehead and proclaimed “I can’t believe Georgia O’Keeffe is dead!” And I smiled, because I know that despite everything, we will be better than just fine.
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