Parenting Advice in the Real World
We are two weeks into the new school year, and life is back to our usual routines! Not much to report on around here (Derek loves school, hes happy) so I have been reading other peopleās blogs.Ā
Over the years I have read hundreds of lists that are giving advice and tips to parents of children with special needs.
1. Donāt be afraid to ask for help.
2. When someone offers any kind of support, take it!Ā
3. Dedicate time for yourself (if your cup is empty you have nothing to give others).
4. Schedule regular date nights.
5. Donāt compare your child to other children.
6. EXERCISE ~ itās the best stress reliever.
7. More feel good, inspirational advice, that doesnāt make you feel good at all.
It is mostly advice that you already know you should be doing, but donāt or canāt for numerous reasons.
Ā Of course we should all exercise and dedicate time for ourselves, we know this, it promotes good mental health and reduces stress. Iām also sure we would all love to have a date night. In reality, parents of typical kids have trouble conquering these simple tips in the first decade of parenthood, nevertheless a parent that has a child with more demanding needs.Ā
More than likely, we are using our free time to read a useless article on how to manage our stress, or how to help our kids, or some of us are just trying to shower alone**. If youāre still reading this, Iām going to try to give you some actual tips* that I have learned over the last 18 years that might actually be useful. However, my child some intense behavioral and medical needs, so I might just sound like a crazy person to some parents.
*This is in addition to all of the great advice listed above (you still have to eventually find time to exercise, sorry).
**If you havenāt showered by yourself in a while, go do that instead, my advice isnāt that good.Ā
1. Get a three ring binder. Appointments got easier once I got organized. Start with about 30 sheet protectors and 10 tabs and take it to every appointment and meeting and fill it up. Some tabs I have are:Ā
IMPORTANT DOCUMENTS (birth certificate, shot records, etc.) CONTACTS, MEDICAL, BOARD OF DD, SOCIAL SECURITY, RESPITE CARE, IEP, CAMP, GRANT PROGRAMS, etcā¦
2. If you donāt have information to fill your binder up, find more. Find out everything you can about the programs in your area and sign up for all of them. It sounds overwhelming but some things have waiting lists that are years long. (medicaid waiver programs, family grants, summer camp, recreation programs, summer respite, family camp, etcā¦) Find out what is offered in your area and take advantage of itā¦especially the free things! There are programs out there to promote peer socialization, and family engagement, but they wonāt come knock on your door, you have to look for them. Start at your local Board of Developmental Disabilities and go from there.
3. Pick your battlesā¦.better yet, eliminate unnecessary, reoccurring battles. Ā Ā
My son would not leave rugs on the floor, I tried off and on for YEARS to have cute rugs, but he would put them in the trash or throw them behind the couch; Ā so I eventually gave up on having rugs, after YEARS!!! They obviously bother him, and it isnāt the end of the world for me not to have them, so he finally won that one. (I wish I would have saved my time and money and let it go long before I did).
Another example: If your child keeps peeing on the kitchen table, and youāve tried every reasonable approach imaginable to teach him not to do it, and he just wonāt stop. GET RID OF THE KITCHEN TABLE. Extreme? Maybe. Put it in the garage, and in a couple weeks, try again if you want.
If itās a daily battle that you're not winning, sometimes as a parent we have to take extreme measures to make sure we are still in charge.
Ā Iāve spent way to much time fighting battles that looking back now, were never really important in the first place.Ā
A fellow mom, asked for advice on what to do about her son constantly flooding her apartment. TURN OFF THE WATER. (You can turn off individual faucets under most caninets).
Find whatever āitā is and eliminate the possibility of it happening.
4. Safety. Ā Your most important job in your life is to keep your child safe. Ā Do whatever it takes to do just that. Use the backpack leash thingy, put them in a stroller even if theyāre 8, screw your windows shut, use double sided key bolts on every door in your house, get security cameras, write your phone number on their clothes (or arm), etcā¦ Do whatever YOU need to do to keep YOUR child safe. Donāt worry about stares, or comments from other people, they mean nothing to your child, Ā and unfortunately your child means nothing to them. At the end of the day, safety is more important than social acceptance.Ā
(Again, I wish I would have just jumped to using all of these precautions from the get go, instead of exhausting all other ātypicalā means just to try to fit in with society.) And for the record I have or do use all of those safety precautions.
5. Nutrition: Ā They donāt have to eat veggies everyday. AND They will be ok if they donāt. They might eventually, they might not. All you can do is try. (Derekās nutritionist told me to just keep introducing new foods everyday over and over again and he would eventually eat if he was hungry). Ha! Iām almost certain at one point he wouldāve starved himself before trying any new foods! Ā He has NEVER tried a vegetableā¦.heās 14. He eats 7 foods.Ā
But last year he did try spaghetti, and this week he tried pizza! š
6. Potty training is almost guaranteed to be a nightmare (when your ready, ask for advice on an autism mom group, and youāll get 3000 tips). We were finally successful at the age of 12ā¦.then again at 13. š¤
7. Ā Getting naked? If it is a sensory issue, then try to teach them there is an acceptable time and place (after school/in their bedroom). You can use tricks like cutting out the feet of the pajama sleepers and putting them on backwards (so they canāt access the zipper). And give them sensory input..maybe a deep tissue massage before they have to get dressed. Your childās OT should be able to address this issue with you. If your child is constantly taking their clothes off and they arenāt in OT or sensory therapy, I would look into it.
Now I have to wrap this up, because Derek just woke up from a 2 hour evening nap that I let happen, because I was distracted typing this, and now heās going to be all nightā¦. (obviously, Iām not going to be the recipient of the worldās best mom anytime soon, so maybe you should forget everything you've read so far..)
But if still, you are reading this, I have just one more peice of advice, itās kind of corny and would fit in up there on that first list, but itās actually truthful and really important to remember.Ā
8. You donāt have to have it all figured out. You donāt have to be perfect. We are all hot messes (parents of typical children and parents of special needs children) some just hide it better than others.
We all feel guilt, joy, regret, pride, shame, anger, and embarrassment. We all make mistakes.
You know your child better than anyone else. No matter what, follow your gut, most of the time itās probably right, and if itās not? So what? Do what you got to do. I got your back.
