Sunday, June 16, 2019

A Father's Day Post

It is not easy being a parent.


Let me start out by giving a shout out on this day devoted to dads. To all those dads who are there for their kids and who are actively involved within their family, you are appreciated, you are needed, and you are loved. I look back on the days that our girls were young and remember my husband playing "Pretty, Pretty Princess," endless playground visits, reading to our younger one and falling asleep on her floor, walking endlessly  while carrying our older one while she screamed, and driving 26 hours to Walt Disney World with two other young ladies who were coming along to help us out because flying was not an option back then. I remember potty training (ug), going to school meetings (ug), and many many many trips to various doctors and specialists (ug). Through it all, he was the calm and rational one. As an Engineer, he looked at everything through that lens. What makes sense, what were the options and what was worth the risk. I cannot express how thankful I am that we were on this parenting journey together.


At this point, my husband is now a dad to two young women, RJC (27) and NMC (24). He is a full fledged "autism dad." He embraces the role of dad to both girls and over the years he has figured out how to move from one parenting style to another, depending on the child. Some will say that every parent does this. No two children are alike so parents have to parent each child differently. Fair statement.


The difference for an autism dad, however, is that as typical children grow up, it is natural that they grow through specific stages and parents grow with them. The relationship changes from parent-child to more equal footing. At some point, let's say between 18-25 when the brain has completely developed, a parent can usually take on a more supportive role rather than a directive, hands-on role. The child becomes an adult, they start to make their own life decisions, they are able to take on their own financial responsibility and the parents learn to navigate the world as parents of an independent adult. The parent may now choose to retire, they may become grandparents, travel, find a new hobby etc.


My husband will not be that dad to both gals. We are getting there with NMC. His general role with her now is to offer advice when asked with things like taxes or jobs. They have conversations about life that hopefully helps her stay the course and lets her know that while she is making her way in the world she always has dad to help her out.


Parenting RJC is a completely different way of parenting.


Let's compare parenting NMC vs. RJC. today - Father's Day.


NMC's day (age 24): She lives in an apartment in another town. Texts to say she is running late but will meet us at grandma and grandpa's. Shows up to grandma and grandpa's - eats lunch, chats with everyone about general life issues, tells some jokes, says she needs to get home, and she's off and running. We do not know the specifics of the rest of her day as she is completely in control of her own time and schedule. 


RJC's day (age 27): She lives with us. Wakes up and comes to the living room in her jammies to play on the iPad. We tell her it's time to eat breakfast and get dressed. We tell her it's time to go grocery shopping and off we go. We come home and she puts away the groceries. We tell her it's time to go to grandma and grandpa's house. She packs her own food since she does not like what we will be having, gets in the back seat of the car and puts on her DVD player. We go to grandma and grandpa's and she wants to eat though the rest of us aren't ready so she sits at the table and eats while the rest of us are chatting. She isn't able to completely take part in the conversation but when she hears a word she knows she may comment (thought the comment is only generally related to our conversation we always stop and comment back). We eat, she plops down on the couch and hangs out. Occasionally she will call out a question to one of us or wants to engage in some scripting and we respond while continuing the conversation that we are already in. We tell her it's time to head out. We come home and she is happily back in her spot with her iPod. A little later we tell her it's time for dinner, time to get a shower, time to put on jammies, time to brush her teeth and hair, time to go to bed. Of course, there will also be various moments of general conversation or scripting. We may also decide to take a ride for ice cream and she will come along - she cannot be left alone. Ever.


During the week, as an autism dad, he is responsible for picking her up from her Day Program, taking her on various errands (he or she may need a haircut, he may have a chiropractic visit so he takes her along, or they may stop at the grocery store, the bank, etc). It may be an evening where he is coaching her Special Olympics team or he may need to help with some paperwork. If I have a meeting, he is on home duty. If he has a meeting or wants to do something socially, he needs to be sure to let me know ahead of time so that I am on home duty. If he wants to plan a date night for us, it needs to be planned ahead so that somebody is home with RJC.


Being an autism dad also means: 


  • that when she is having a difficult time he knows what to do that may keep her behavior from escalating. He also knows there may be nothing he can do to keep her behavior from escalating and that it does not mean he is a "bad" parent,
  • that he needs to set aside his own needs because it is more important for her to be happy than for him to be happy. For example, he can certainly watch that movie he wants to see, but if he wants to be sure to hear it over the scripting it needs to be watched (and read) with captions,
  • that he may not be able to retire early because he is financially responsible for her and having medical and dental insurance that allows us to keep her current doctors is important,
  • that when she wants to go to X,Y or Z place, he will need to take her because she does not have friends she can call on the phone and say "hey, let's go!"
  • that if he is tired from a long day he can go to sleep - as long as there is another adult in the house who is awake.
My husband is an autism dad and it is a 24/7, intense and complicated role. He takes it on with love and enthusiasm. I admire this guy more than I can express and I probably do not tell him that often enough. There is nobody on this earth that I would prefer to have with me on this journey. Nobody.


Happy Father's Day to my favorite (and yes, only) husband.










6 comments:

  1. Thank you for sharing. Once again I am drawn your world and am in awe of the two of you. ❤️

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  2. As a sign of gratitude on how my son was saved from autism, i decided to reach out to those still suffering from this.
    My son suffered autism in the year 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, he always have difficulty with communication,and he always complain of poor eye contact  . we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and they left the contact of this doctor who have the cure to autism . I never imagined autism  has a natural cure not until i contacted him and he assured me my son will be fine. I got the herbal medication he recommended and my son used it and in one months time he was fully okay even up till this moment he is so full of life.autism  has a cure and is a herbal cure,you can contact the doctor for more info on drwilliams098675@gmail.com on how to get this medication, Thanks.

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