Friday, May 20, 2016

9 Tips For Special Needs Parents

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I still have a lot to learn about having a child with special/medical needs, but I have learned a few things since Davy was born.  They're things I wish I'd known right from the start so I thought I'd share them with you.
9 Tips for Special Needs Parents

1. Keep the diaper bag overstocked & ready to go. 

There have been quite a few last minute doctors' appointments that I thought would be quick, but turned out to be all-day affairs.  Having the diaper bag always packed meant that I was ready to go at a moment's notice and keeping it overstocked meant that I didn't run out of diapers when we were gone longer than anticipated.  My favorite diaper bag (and I tried out quite a few over the course of 4 kids!) was this Jeep backpack diaper bag.  It kept my hands free and easily clipped onto a stroller, plus it was roomy enough for everything (including tube feeding supplies) we needed with lots of pockets for organization. 

If your child is too old for a diaper bag, having a "go bag" packed and left in the car with a change of clothes for both you and your child is also a great idea.

2. Bring snacks for yourself. 

I learned this the hard way when a quick morning check-up with Davy's doctor turned into a transfer to the ER where we spent over five hours before being sent to the hospital for an overnight stay.  I didn't have time to eat breakfast before I left and assumed I'd be home for lunch.  It was after 9 pm before I was finally able to get something to eat.  Now I keep a couple of protein bars in the diaper bag and my purse at all times.

9 Tips for Special Needs Parents
Davy during his 2nd hospitalization

3. Bring something to do.  

You will probably spend a lot of time sitting at the doctors office and in the hospital.  Most places have free wifi so definitely take advantage of that if you have a mobile device.  Don't forget chargers for your phone, tablet, etc so they don't die on you!  The first time Davy was admitted to the hospital, my phone went dead before I was able to finish making the phone calls I needed to make to locate an overnight babysitter for the older kids.

4. Keep your child's outfits simple.  

If you have babies or small children, you know that they usually have to get undressed at the doctors' anyways.  When your child is seeing multiple doctors in one day or is hospitalized, certain outfits will make exams easier.  While Davy was in the hospital, they allowed him to wear his own clothes so he'd be more comfortable.  I dressed him in sleepers that snapped down the front so we could run wires and tubes in between the snaps and easily undress him for exams.  After he got his G Tube placed, I continued to dress him in snap-front sleep and plays (my favorite were from Carter's) for a while because they allowed easy access to his button.

5. Know your family and friends' work schedules.  

I'm not saying you need to memorize their hours, but it helps to at least have an idea of when they are usually at work so you know who is most likely to be available when you need a last-minute babysitter for your other kids or a ride to the hospital.

9 Tips for Special Needs Parents
Davy during his 2nd hospitalization

6. Take a notebook to appointments for notes and questions. 

When Davy was hospitalized for nine days, I ran out to Walmart and bought a notebook to keep track of all the tests they were running, questions I needed to ask during rounds, his weight checks, etc.  It was immensely helpful.  I've since upgraded him to a 3 ring binder with sections such as contact info for his specialists, questions, a list of his symptoms and diagnoses, weight checks, etc for organizing information.  

7. Use your cell phone alarm for feedings or medication reminders.  

My phone stores up to 10 alarms so when Davy had to have tube feedings every three hours, I would set an alarm for each feeding first thing in the morning.  When you get busy, time can get away from you so it helps to have an alarm.

8. Accept help from others when they offer, don't be afraid to ask for help, and realize that this is your new normal.  

Yeah, it's hard to have to ask people for help when you want to be able to do everything on your own, but you're going to need help and emotional support.  I found a lot of the support I needed in Facebook groups for parents of special needs children. 

9. Always remember: you're stronger than you think you are.  

I'm sure you never thought this would be your reality, but here you are.  Allow yourself to fall apart and cry sometimes when you need to.  You can't be strong all the time, but you can pick yourself back up and keep moving forward.

"9 tips for special needs parents from @SunshineNSpoons #specialneeds #parenting #specialneedstips"
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Do you have any tips to share?  Leave a comment-I'd love to hear them!

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