This time of year always is a bit melancholy for me as a special needs dad. We see graduations, school awards ceremonies, promotion celebrations, kids excited for summer vacation. And we as special needs parents find a seat in the corner, so to speak, as people carry on in their lives celebrating the achievements of their kids. Yes, this is plain and simple jealousy, I won’t shy away from that word. My wife and I are jealous of parents with typical children. It is hard to sit back and watch things happen that we know will never happen for our child. What saves us from this is that when you are celebrating graduations, academic achievement, etc. We are celebrating the simple things that our kids do, and they are just as exciting.
Hannah as a neuro-atypical child doesn’t attend formal school. We have had her on an approved homeschool curriculum, since she was of age to attend school. Some parents in our circles have children that can attend school, or have facilities that can handle their needs. Unfortunately in our state (Florida) our education system is lacking in resources to be able to provide in person instruction for someone like Hannah. The offered to have us at a local school that had trained staff, however the ratio for students wouldn’t allow the 1:1 care that Hannah needed. Now, with her ventilator, that would be even more of an issue. So, My amazing wife who was a primary school teacher for 8 years did what she knows best, she got to work. Shelly spent time figuring out what we needed to do for Hannah to prove to the state that she was “progressing” while at the same time researched what resources we had available to us. We found a scholarship program for Florida that allocated money for Hannah’s educational needs which included use for therapy session, education related tools, activities, and any administration fees. We got a bank account basically for a year of needs, that would be evaluated each year. We were accountable for everything we spent, but Shelly is an amazing teacher and had ideas for exactly what she needed.
The curriculum Hannah works on is everything you would expect. ABC’s 123’s, art, science, and physical therapy. Each day Hannah has a plan. Now, it doesn’t always go smoothly…sometimes she doesn’t want to cooperate. Some days she has a bad day and we couldn’t get her out of bed, or like in the case of our hospitalization, she wasn’t in a place to do it. But Shelly has the plan, she engages with Hannah in a very touching and personal way. I get to participate every once in a while as she does most of her school work while i’m at work. But I get treated to her activities and art work when I get home. Our fridge is adorned with pictures she’s drawn or colored. We have arts and craft littering the house. The one great thing is that mommy always picks up for her so there aren’t any unexpected messes.
So yes, Hannah “goes to school” however we don’t get to see the progress other children make, and we are sad for that. But we get to play with her each day, see her smile and interact. Do age appropriate activities with her. We treat her as a typical child. What we do cherish, that other parents might not, is the opportunity to be excited for the little things she does do. She holds pens and markers very nicely now, where she was unable to before. She smiles meaningfully when she does something she enjoys. She tracks and watches more noticeably, and she turns away from things she does not like. While this is a far cry from expectations of most 8 year, olds we take it. Yes, we long for the normalcy of schooling with Hannah, and Shelly does get tears in her eyes walking down the aisles of target during back to school specials. Its just a longing for that inclusion, wanting that for Hannah.
Shelly has been trying to work with her and her speech therapists on using communications devices. These are buttons that she can associate with activities. And press so a voice says what she wants. She’s pressed deliberately, how much she is really getting out of it is a mystery, however we owe it to her to try every day. Many people outside of our own circles may see the things we do as fools errands. Maybe even some of the doctors and therapy practitioners themselves feel that way. I think they know what we are accomplishing thought how we interact with Hannah. We promised we would give her the best quality of life, and even if these things are a long shot, she deserves every right to try.
Because of her diagnosis Hannah has global delays, which in a nutshell means that every aspect of her development is severely delayed. Her motor functions, her comprehension, cognitive functions all significantly impaired. Her eyesight we know is compromised, we don’t know exactly how well she sees because she cant tell us. What we do know is that she sees lights, and recognizes faces. Once after not seeing Jon (my father in law and Hannah’s Grandpa) for a few months, her face lit up when he got close to her, he hadn’t even said anything yet, she just recognized him. That brings my heart joy. She reacts that way when I get home from work, when seeing Shelly after days away. We get to celebrate those moments. It is nothing remarkable to most people, but to us its astounding.
We feel left out a lot…We witness our family and friends around us celebrating milestones we know we will never achieve. I think that’s one thing that might grind my gears the most. I know with my in-laws they will celebrate every little thing with us, her “trach-aversary” her working on the letter “A.” But when talking with other family or friends they are quick to point out all the good things XYZ niece or nephew or child did, but fail to give kudos to Hannah for what she has done. They don’t know her milestones, they have never asked. I think some of it is born out of pity. Some may think is uncomfortable to approach that topic, for fear that it may upset us. But we rather people seek the information, and ask what Hannah is doing in school, or how has her therapy gone? Ask us what she is progressing in? something. We feel the furthest isolated when those closest to us, rather exclude us instead of inviting us closer. What’s even worse is complaining about their own children’s issues and seek our sympathy. Yes, this may be jealousy rearing its head again, but a special needs parents we need that same validation for our self worth. We need to be able to share in that success and brag about Hannah a bit. Give us that opportunity.
Something I always need to remind myself of is that it’s simply amazing Hannah is with us at any point. I think a lot of parents take for granted the amount of time they have with their kids, maybe that is why when tragedies occur, the unprepared parents have many personal regrets, and their grief is severe. It is hard for them to even comprehend that they would outlive their child. For us it is the opposite. Every single day is a gift. We know that we are on borrowed time. We know we will outlive Hannah, it’s sad, but it gives us reason to not miss a single moment. To be present with her. Maybe by seeing us in public, or reading this blog it will inspire that in more people. I know too many parents that view their typical children as a burden, because they can’t do what they used to do, can’t go out with friends, can’t spend money on fancy toys. I would give anything to have those “problems.” I would happily give up my hobbies so my daughter could go to ballet classes, play soccer, or play an instrument. My message to parents is to never take for granted any moment you have with your kids. If they ask for your attention or your help…give it to them. God teaches us selfless love through our children, we have to make sacrifices, we have to nurture that bond. For me that looks different, but it is very much the same for everyone.
I will never get to walk my daughter down the aisle for her wedding day, or celebrate her graduating school. That thought has brought me to tears many times. Yes, it puts me in a dark place occasionally. I can’t help it , it is human. I get to be a bit mad at my lot in life, my role as a caregiver, provider, and seemingly lastly a father. The role of a father, seems less important…what is the end game? What lesson am I teaching? How do I even begin to gauge how good a father I am being if I can’t help her grow? I pull myself out of this ineffectual chain of thoughts by reminding myself that my role is simply to love her. To put everything else…my doubts, my fears, my own sense of pride…aside. To be present for her, to celebrate what I can…the little things…every second of every day.
As a special needs dad, we celebrate everything. We get satisfaction out of our daily routines, out of the smallest gesture. I guess I’m ok with that. As I see some of my employees graduating , I can feel a sense of pride in them. Maybe not be as jealous as I once was, because even though my life is different. Even though Hannah will never get to do that. I get to see her when I get off work. Some days that is enough to keep me going. Find the reason to celebrate, don’t wait for it to happen, and please don’t take for granted the time you have with your children. Ordinary can be extraordinary if you are willing to see it.