The life of a special needs parent is intricate. There are many books, but there is no all encompassing guide. Our children lead us on the path while we struggle to educate ourselves as best and as rapidly as we can.
As a special needs parent of 2 children, I'm aware that the focus tends to be on how rewarding it is to see the world through a different perspective. I, sadly, am, also, familiar with the people that make me feel ashamed for needing a break, or for feeling exceedingly frustrated with my situation. Yes, it is emphatically rewarding to see those marvelous breakthroughs, and being blessed with a unique point of view is phenomenal but,the less talked about side of this is that it is also desolate.
My daughter, Violett, is 6. She was diagnosed with Sensory processing disorder at 2 and Autism at 3. We, her father and I, are currently in the process of determining if she also has ADHD. She has several therapies and prefers routine. She prefers the company of adults which limits my personal time to recharge or allow myself to temporarily breakdown. Though, she does have her own set of struggles, she is more straightforward and easier to care for than my son.
My son, Khai, is 7 years old. He has Autism, Celiac Disease and Type One Diabetes. He was diagnosed with Type One Diabetes at 3 years old, Autism at 4 and Celiac Disease at 6. We are in the process of determining if he also has Oppositional Defiant Disorder. His life is full of routines, special foods, needle pricks, frequent doctor visits and multiple therapies. He requires round-the-clock care and attention. This is exhausting both physically and emotionally for he and I. Thankfully, I have a husband that tends to our daughter, allowing me to spend most of my time focusing on our son.
Life before his diagnosis now seems so distant. Not just because of the increase of medical treatments but, also because my social life and support system changed. If you thought finding a babysitter was hard before try finding one that is comfortable with Autism, willing to calculate carbohydrates and insulin dosages while making sure everything is gluten-free. I assure you it is nearly impossible as I haven't had a date-night with my husband in years.
I have no friends that can relate to my daily life. Frequently, people become bored when talking with me. I think, this is because I don't have much to talk about, other than my children, our frequent struggles, fights, medical visits and school functions. I find that, I'm commonly behind on whatever the current trend might be. I can help you with a few Autism related issues, inform you about research studies for both Diabetes and Autism, but I can't tell you anything about a current reality television show or dish out celebrity gossip.
I spend most of my time focusing on educational and medical needs of my children which includes: going to Individual Education Plan (IEP) meetings, updating and reviewing those IEPs, filling out forms, and speaking with several therapists. My children have mental health therapy, occupational therapy, speech therapy and, on occasion, physical therapy. I, also, speak with the school nurse on a daily basis, sometimes several times per day. I have to make, and keep track of, doctor appointments. I maintain weekly contact with Khai's endocrinology nurse, to ensure he is getting proper insulin dosing. I check his glucose levels ten times or more per day. I must count or measure out his food servings, after verifying his food is gluten-free, of course. After he eats, I add up the total carbohydrate count of his meal to determine his insulin dosage. I, then, have to coax Khai into allowing me to administer the injection. I don't blame him for fighting it; I wouldn't want to endure so many shots every day, either. When it's finally time for the children to go to bed, I try to watch a little television or read a book. Even then, I have to continue to monitor that they are sleeping safely, give insulin shots, check glucose levels and treat any high or low Khai might have. As you can see, I have very little time left to focus on meeting my own needs.
My house tends to stay a little messy because I have a hard time motivating myself to clean when I have a little time to myself. In my experience, housekeeping is complicated when your children have sensory needs. My children tend to cut, tear, squish, smear, color, write on, and test the boundaries of everything. Now, I tend to be opposed to having visitors. I have had people judge and insult me for having a disheveled home. However, I decided that, keeping my house clean is not as important as allowing my children to explore their senses, or giving myself some time to rest.
It is hard to take my children to someone's house, because they love to touch everything. They love to explore every corner, open every door, rummage through drawers and cabinets. My children have an unquenchable curiosity, but are also clumsy and sometimes accidentally break things. They hunger for knowledge, and ask a plethora of questions; leaving little time for adults to converse. After meeting our family, we tend to no longer get invitations, unless it's something someone feels obligated to do.
People, including some family members, are awkward around my children. Interacting with them can be confusing. It can be difficult to understand their speech, even when you live with them.. They take things literally. They are still learning about jokes, sarcasm, cliches and metaphors. I have noticed that, some persons are afraid to treat my children as if they are neurotypical or “normal” children. My children still enjoy a lot of things neurotypical children enjoy.. My children love to play tag and console games. They love cartoons. They tend, only, to have difficulties when it comes to playing with some toys as they are intended to be used. For example: Violett will gather up toys and shove them in buckets, socks, bags or whatever else she can find that they fit into. Khai lines things up, groups things according to colors and shapes. But they still enjoy toys.
Crowds love to stare at us during meltdowns. I have never had anyone offer any kind of help, when my child is having meltdown. Bodies will gather, stare, point, judge, make rude comments, but never do they offer support. I've heard them distantly assert that I need better control over my child. They murmur that they, "wish that child would shut-up." I have even encountered people accusing me of spoiling my children and bringing this on myself. I, now, dread going out in public. I am terrified that someone is going to emotionally scar my children, because they are so close minded and quick to judge. I wish that people would try to be more understanding. I never know how an outing is going to go until we are there. A meltdown can be triggered by something you might consider a minor annoyance like a person wearing too much perfume or cologne. It could be triggered by the store not having a specific color or flavor of an item. There is just no way to always avoid it. I do what I can to avoid these things. I am so grateful to be able to shop online for many things, now. It has been a blessing to avoid some meltdowns.
In closing; I write this not in an attempt at receiving pity, but to encourage others to strive for compassion, emotional support, and endearment.If you see a parent struggling with their emotional child do not be so quick to conclude they are bad parents or a bratty child. Instead, either offer a kind word of encouragement, sympathy, ask if you can help or just simply don't stare and say rude things. If someone is feeling outcast, and trying to share their struggles with you please don't just brush it off, change the subject or send them an emoji. That person is trusting you, exposing their darkness and hoping you attempt to offer them solace. Please, do not further alienate those that carry so much alone. A kind gesture, word or even a night out without children can be more refreshing than you can imagine, for someone that is rarely afforded the luxury of enjoying personal time or the company of a good friend.
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