To Be The Best Caregiver I Can Be

November is National Family Caregivers Month. My fifteen-year-old son Tate has autism and my youngest daughter has special needs as well. Currently, I am also helping to care for my elderly parents. I was asked to write a post about being a caregiver. I took a stab at it and read it back to myself. I had written an essay that sounded like I was having a pity party about the all the time my kids’ disabilities have stolen from me. So, I tried again. The second attempt was an essay comparing the amount of time and energy I spent raising my typically developing children to the amount of time and energy it is taking to raise my special needs children. It really did not reflect the way I feel about being a caregiver at all. My third attempt was also sent to the trash bin.

It occurred to me then: I had been trying to write about the hardships of being a caregiver. There is no doubt it is hard. Everyone knows that. But what good caregiver dwells on all the negatives involved? Did my own parents keep track of all the times I woke them at night? Or vomited in my bed? Did they begrudge the money they spent on my education? Of course not. Good parents are not keeping score of all the difficulties they have with their child, or the sacrifices they make.

A good caregiver is a good one because he does the things he needs to do willingly. So I made a list. I made a list of the things that help me to be the best caregiver I can be in hopes that it might encourage others to be the best caregiver they can be.  

1 Laugh. I laugh when things are funny, and they often are. There have been times I have laughed to keep from crying. Remember to laugh. A sense of humor can make all the difference.

2 Smile. It’s hard not to be happy when I have a smile on my face, and it is hard to become angry or be unkind when I am smiling. A smile can totally change another person's response too. 

3 Sing. Just like smiling, it is so hard to be anything but happy when I am singing. Music is such a valuable tool. 

4 Cry. If laughing, smiling, and singing are not going to work today, a good cry might. But if you find yourself crying often and unable to cope, talk to a professional. 

5 Share. Find someone who will listen. Online support groups can be helpful when no one is physically close. I blog and have built my own sort of support group of followers who help me far more than I help them. 

6 Find a cheerleader. I have many cheerleaders. Some of them are part of my physical family and some are part of my church family. Some are online friends. Do not go to discouragers for advice or for cheering up. Do not go to the support groups that mostly talk about the hardships and the negatives when you are in need of encouragement. Surround yourself with positive people. 

7 Set goals, but set reasonable ones. It is helpful to have short-term goals. Some of my goals are very small and easily achieved in a day's time, while others might take a few days. It might even help to write goals down and be able to cross them off as they are completed.

8 Prepare yourself. It is much easier to prevent problems before they develop, than to fix them after they occur. I try to anticipate the things that might go wrong, and put a plan in place for the “just in cases”. When it is time for appointments or meetings, go prepared. Make and take a list of questions and concerns.

9 Control yourself. I cannot control others, but I can control myself and how I react to others. Remember that you are responsible for you.  Do not make matters worse by speaking in anger, or saying something you may later regret. There will be times when those around you who you had hoped would help, will not. There may be times when you feel resentful, if not because your child is disabled or your elderly parents are sick, then because the ones you thought you could count on to help, do not. But the kids still have to be fed, the sick still need to be looked after, and the trash still needs hauled out to the curb. It is up to you. You cannot control those around you, but you can control yourself.

10 Dismiss yourself. Sometimes I need a few minutes to regroup. When everything around you seems to be falling apart, take a deep breath, count to ten, say a prayer, bite your tongue, or walk away.

11 Forgive yourself. I make mistakes. I make a huge mess of things sometimes, and you will too. Nobody is perfect.  ♫ Let it go. Let it go. ♫  

12 Do not lie to yourself. Face your truths. Dwelling on the things you wish you could change will only make you miserable. Also, pretending problems are not really there does not work. Roll up your sleeves and do what you can to make things better. The grass is not really greener next door. That neighbor or friend who seems to have the perfect life with the perfect kids and a pocket full of money, has his own struggles too. 

13 Reward yourself. Whether it is something small like a soda, or something more substantial like a night out, I find that it helps if I have something tangible to look forward to at the end of the day or at the end of the week. 

I'm not an expert. I have made plenty of mistakes, but these are the things that help me to do what I do best. Perhaps these things could help you to be the best caregiver you can be too. 

Writing this has helped me to remember that being a caregiver is a privilege and a worthwhile and fulfilling job.

If you liked this post, you might also like this one...  Stepping Up To The Challenge

REASONS WOMEN CAN DRINK WITH A CLEAR CONSCIENCE

Because I applauded the CDC's bold recommendation last week I've heard some arguments from women about why the CDC's statement was ridiculous. If you have not heard already, the Center for Disease Control made a recommendation that sexually active women who are of child bearing age and not on birth control, abstain from alcohol. There was public outcry. Social media was abuzz and so few seemed to be standing with the CDC. And then there were so many blog posts making fun of the CDC and calling them condescending for their recommendation. The CDC's recommendation targeted women only. It did not include men. And after all that drama, because I am in support groups of parents who are raising children with Fetal Alcohol Syndrome (FAS), I got to see that I was not the only incredulous person online who could not believe that people would argue with the CDC's statement. You see, those of us who know what FAS looks like and see the kinds of lives our children are living cannot fathom anyone drinking while pregnant. My daughter's birth mother could have abstained from alcohol. But she did not. My daughter will pay the price for her whole life. 

Here are a representation of some of the best explanations I have seen this past week that definitely justify the use of alcohol by women of childbearing age who are not on birth control. 

Reasons sexually active women who are not on birth control should be able to drink with a clear conscience:

1. Because men do not have to abstain so it is discriminatory to tell women they should!

Mother Nature is such a chauvinist huh? She only gave wombs to women, not men. It’s about biology, and nothing else girls.

2. This one is really just like the first: If my boyfriend/husband/guy-I-picked-up-at-the-bar gets to drink then so do I!

You cannot find a sex partner who is willing to abstain while you stay sober too? Do you really want to have sex with that guy? If you do, then I got nothing else to say except, “Wow.”

3. Because women have to endure so much for their children (or future children), sobriety should not be added to the list of inconveniences.

I actually have to say it again, “Wow.” You know that baby you may or may not be trying to create? It’s going to do a lot of inconvenient things. And the alcohol you are drinking because you have the right? That alcohol is going to make all those things that kid does that might be inconvenient MUCH more inconvenient. A kid born to a mother who drank will need a whole lot more from her than a kid who is born to a mom who abstained. Kids with Fetal Alcohol Syndrome (FAS) are exhausting.

4. Because it is not right that, even though I may not even be pregnant or become pregnant, the things I want are still put second to a non-existent baby.

So you are on birth control then? Because if you are not then that non-existent baby is not necessarily non-existent anymore is it? Sex creates babies. Drinking alcohol while pregnant creates babies with FAS.

5. Because I know a kid whose mom drank while she was pregnant and he turned out just fine.

Right. It could happen. There are SOME babies born to drinking mothers who do not appear to have alcohol related disabilities. Fraternal twins can even be affected differently while being exposed to the same amount of alcohol in the womb. Do you really want to take a chance? And those babies who do not appear to be affected just might have been even smarter, even more talented, even more “normal” than they already are if only their mother had abstained completely. Look your kid in the eye a few years from now and let him know he might have been even smarter, even more talented than he is now, but you really wanted to have just a drink or two while he was developing.

6. Because some doctors still say a little alcohol is not harmful to an unborn child.

The best reason/excuse yet! You can find a few doctors and articles that will say moderate drinking is not harmful to a baby. You will find far more doctors and articles written that recommend a mother not drink at all. You really want to take a chance? With your kid?

7. Because not drinking is unrealistic. You would have to be a Quaker to avoid alcohol (or unplanned sex). 

Really? I am no Quaker. It really is possible to have fun without alcohol. It really is possible to put your unborn children (even the unplanned ones) ahead of alcohol. Really. 

I reserve the right to add to this list as I'm quite certain I am about to get a few more reasons from women that they should be able to drink with a clear conscience. 

We are not animals. We are people. We get to plan ahead and make complicated decisions about our future and the future of our children. And yes - even the future of our future children. Is alcohol really that important to you? Really?

I do not imagine I will change the opinion of one woman who is drinking and having sex. And I doubt this will boost my blog page. I will most likely lose a few followers. Why then do I feel compelled to write about such a controversial and hot topic? It is because I have to stand up for the things I believe in. If I lose a thousand followers over this post, so be it. I will not be debating the topic any longer. Last week when this topic was being argued on my Facebook Page, one of my readers came to my defense and asked another why she would come to the page of a mother who is raising a child with FAS to argue that alcohol and unprotected sex are not a big deal. It is such a big deal. 

Note: Before I get dozens of comments saying it is not so much WHAT the CDC said as the WAY they said it, I would only respond that it might have been said just a little more eloquently. Perhaps the issue of men and how alcohol damages sperm should have been addressed. But I still stand with the CDC on this one. 

Dos and Don'ts After an Autism Diagnosis

My kids (left to right): Tate, Titus, Emily, Isaac, Sydney (above), Regan, Levi, Bailey

Over ten years ago, my son Tate was diagnosed with autism and my life was forever changed. I am regularly asked for advice from parents of children newly diagnosed with autism. The diagnosis can be intimidating and parents are sometimes unsure of where to turn or what to do. I don’t have all the answers. But I do remember the panic, fears, denial, and the distress I felt when my own son was diagnosed. I know now so many things I did not know then. I can honestly say that the life we are living is not scary at all. And so I tried to put into words some of the things that I thought might help a parent of a child newly diagnosed with autism.  

Don’t let the autism diagnosis intimidate you. Do give yourself some time. Do some reading. Ask some questions. Do not jump to conclusions. Do not let all the doctors, therapists, educators, or the price tag that comes with autism intimidate you. One day you will look back on this and wish you could reassure yourself because you’ve got this.

Don’t let the autism diagnosis cause you to feel sorry for yourself. Do count your blessings. In reality there are things so much worse than an autism diagnosis. Look around you. There are people dealing with truly tragic situations. Now, roll up your sleeves. Your role as your child’s advocate is going to keep you busy. Things are going to be okay.

Tate at Preschool

Don’t let the autism diagnosis cause you to forget. Do remember that sweet baby you fell in love with! He/she is still that child! Don’t become so caught up in the present or so fearful of the future that you forget what’s important. Don’t forget that you are your child’s parent first and his teacher/therapist second.    

Don’t let the autism diagnosis leave you feeling self-conscious or paranoid. Do understand there is no guilt to be had or blame to be placed. There is nothing you could have done differently to prevent your child’s autism. I will not lie. If your child melts down, or engages in stereotypic behaviors in public, there will be stares. There will possibly be rude questions and awkward silences. There will probably be people who think your child needs discipline when, in fact, discipline would be pointless. Don’t let people who are uneducated about autism cause you to feel humiliated. Know this: It does get easier with time.

Don’t let the autism diagnosis isolate you. Do reach out for help. It is true that some people unfamiliar with autism might stop coming around after the diagnosis. They do not understand the behaviors, the meltdowns, the necessity for routine, and the jargon we speak. If you find yourself in need of understanding, find a parent who has already walked a few miles in your shoes. Online groups can be helpful. There are most-likely support groups and other parents in your situation within driving distance. Look to public schools and recreational activities in your area, as well as religious programs. There is a lot of camaraderie in the autism community. Reach out. We help each other. 

Tate's poor motor skills and refusal of foods
often meant someone needed to help him.
Older siblings were always willing to help.

Don’t let the autism diagnosis rob your other children. Do explain autism to your children and what it means to your family. A child with autism will likely need more care than his siblings. Reassure your other children often and show them how important they are to you. When possible try to include all your children in the therapies and activities your child with autism needs. There may be many things your other children want or need that your child with autism cannot participate in. Sometimes your other children will have to have your undivided attention too. Your world cannot ALWAYS revolve around the child with autism.

Don’t let the autism diagnosis steal your joy. Do maintain a sense of humor. You have a choice. You can dwell on all the what-ifs and the should-have-beens and become bitter or you can accept what is and look for the joyous moments around you. Having a child with autism will not suck all the fun out of life. A sense of humor can help you tremendously. The fact is, autism or not, kids are fun and kids say and do really funny things. Enjoy those things. Don’t let autism silence the laughter in your home.

Don’t let the autism diagnosis squash your hope. Do be willing to dream a little differently. Before the autism diagnosis you were possibly envisioning driver’s education, college, a wedding, and grandchildren. Don’t stop dreaming dreams for your child. Those things still might happen. If, as your child ages, it becomes clear some of those things will not be happening, then modify your expectations. But stay motivated to help your child become the best that he can be.

Don’t let the autism diagnosis cause you to doubt your faith. Do take advantage of the things autism can teach you. God does not “zap” families with autism because they’ve been “bad.” Many parents of children with autism report they have become much more patient and understanding people since their child’s autism diagnosis.

Don’t let the autism diagnosis pull you into frivolous debates. Do use your time and energy wisely. You have got important things to be doing. Focus your attention, time and energy on your children and their needs. Don’t get caught up in the autism community debates that lead to nowhere. Whether or not you choose to use the word “autistic” or the phrase “person with autism” is no one’s business but your own. Your right to disclose your child’s diagnosis to everyone in your community or keep it in house is also your own. These kinds of disputes are not helpful and only cause division in the autism community. Don’t get involved. Your time is much too valuable.

I can imagine what you are feeling. I have been there. Autism is like a thief in many ways. It has been known to rob children of their childhoods. It can sometimes steal the joy and hope from parents. Autism has drained a lot of bank accounts and has ruined marriages. But it does not have to be that way. Don’t let an autism diagnosis do those things to you.

If you liked this post you might also one of these: It's Not Such a Bad Life or: 15 Truths of Parenting Special Kids or: There is No One to Blame.

You May Be An Autism Parent If...

Tate, aged 13

My son Tate has autism. He is thirteen years old. I will never appreciate the challenges that autism causes my son and our family but I do appreciate the people I have come to love that are part of the autism community. As Tate grows older and I meet more and more people affected by autism I find so much we often have in common. I came up with this list. Not all of it will apply to you but a lot of it might.

You may be an autism parent if…

1. you toss around words like perseverate, echolalia, and reciprocity in casual conversation.

2. you do not even have to stop and decipher acronyms like IEP, IDEA, ESY and BCBA anymore because they are part of your everyday vocabulary.

3. you know what a visual schedule is and have relied on one to help your  child to get through the day.

4. you have alarms on the doors of your home and your heart breaks just a little more every time you read about another child from the autism community who has gone missing.

5. your inbox is flooded with messages anytime there is a trending new “cure” for autism or a new theory about its cause. Relatives, friends, and even acquaintances are willing to help in this way. Got broccoli?

6. you have no need to keep track of a grocery list because your child only eats five things. (Broccoli is not one of them.) 

7. you know the names of almost every character from almost every animated movie ever made and you can quote much of the dialogue.  

8. you have learned the name of every Thomas the tank engine character, read train books until you are hoarse, and put together countless train track pieces with your child.

9. there is someone in your life who could use a breath mint, ought to get a haircut, or needs to lose a few pounds, your kid will break the news to them. No problem. It is just a service he offers. 

10. you hear clichés every day. “Everything happens for a reason” and “God only gives special children to special people” are phrases you have heard from complete strangers.   

11. you have tee shirts and jewelry with puzzle pieces on them and your car sports an autism awareness bumper sticker.

12. you never leave home without a tablet and a charger. And if the battery on your kid’s tablet goes dead you and your kid both may cry.

13. you know where every restroom and every exit is for all the places you frequent with your child.

14. the people at the few restaurants your child will eat at, know you and your child very well. They even know your kid’s order before you give it.

15. you use a transition warning before most changes, large or small.

16. you have ever laid awake at night either wondering how you were going to afford all the things your child needed or worrying about his future.

17. you silently scream inside when your child is taught about something like germs at school knowing it will probably begin another obsession.

18. you have ever had someone ask, “Your child has autism? So, what is his ‘special gift?’”

19. you wish there was some way you could convey your thanks to all your child’s therapists and teachers and paraprofessionals to show them just how much they mean to you. But you know there is no gift big enough and no words strong enough to tell them how thankful you are for all the things they do for your child.

20. you hate it when those in the autism community debate vaccinations, the use of the word “autistic,” or whether or not a “cure” for autism would be a good thing or a bad thing. And you wonder why we cannot all just respect each other’s opinions and get along.