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 http://bit.ly/1Tv78Tt #specialneeds #parenting #specialneedstips"
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Do you have any tips to share?  Leave a comment-I'd love to hear them!






This post is linked up at:
1.You Are a Daisy 2. Coffee Shop Conversations 3. Being Fibro Mom   4. Create With Joy 5. Susan B Mead 6. Love That Max 7. The SITS Girls 8. Comfort in the Midst of Chaos  9. Mom's Small Victories 10. The Zippy Zebra 11. Raising Samuels 12. Mummy Do It 13. Smart Moms Smart Ideas 14. The Modest Mom Blog 15. Mom's the Word 16. Donna Reidland 17. What Joy is Mine 18. Our Home of Many Blessings  19. Marilyn's Treats 20. The Joy Chaser  21. Mrs. A Ok 22. A Different Dream 23. Cornerstone Confessions


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19 comments:

  1. Hannah, these are brilliant ideas. I especially think the notebook (binder), change of clothes, and snacks are important. And setting alarms. There is no way to know what will happen, but having these steps in place will alleviate some of the stress. That is also a good idea about having friends' and family's schedules at hand. I am sorry that you have to know these things so well, but thank you for sharing them with others!

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    1. Thank you so much! Yes, it really helps to be prepared!

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  2. Sounds like you've got this under control. Way to go, girl! I'm sure Davy appreciates everything you do for him.

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  3. Sounds like you've got this under control. Way to go, girl! I'm sure Davy appreciates everything you do for him.

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  4. The hours that I have personally spent in the hospital when our children were young are huge in number. We took turns and had a network of family and friends that helped out. Your notes are right on line and I so agree with them. These will help all those that are needing the help as they go through the period of staying in hospitals not knowing when their child will be in hospital or at home. Thanks for sharing this valuable information

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  5. It is really important to stay on top of feedings. I was once on a trip with special needs children and one of the counselors lost track of time. The child started to cry and they realized she was late for a feed. Since most children cannot speak up for themselves it is the responsibility of the adult. A little scary but with the phone alarms being so amazing, no feedings were ever missed again.

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    1. I agree! With 3 other kids to take care of, it didn't take me long to realize that it was very easy to lose track of time and miss a feeding. My son didn't have natural hunger cues so he wouldn't cry for food no matter how long between feedings.

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  6. All of these are essential, but for the notebook with pen and bringing food for myself are important. I always forget things and these are the two that I always miss. I've been regretful of it many times, but I'm getting better at remembering it.

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    1. Yes, those two tips are really important! I wish I'd known all this when Davy was first hospitalized-would've made things much easier!

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  7. These are great tips not only for a special needs mom but for all mom's. Mom's of special needs children are just that special. They are often stronger then us all and are incredible resources for every mom to learn from.

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    1. So true!! I've learned a lot about parenting in general since my little guy was born with special needs!

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  8. I love these tips - they are all spot on and very practical. I know I've been caught out without food and supplies before as I thought it was going to be just a quick appointment and either you wait for hours or complications arise that see you headed for emergency. Great suggestions for any new special needs parents x

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    1. I'm glad you liked them! I wish I'd known these things right from the start!

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  9. I use everyone of these tips. One tip I have is use a different book to keep track of mileage :)

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    1. That's a great idea! We have mileage sheets we fill out for our insurance, but for someone who doesn't, keeping a small notebook in the vehicle would be a great idea.

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  10. Hi Hannah, These are helpful tips for all parents. The most important point and take away is think and ahead and be prepared for anything that could happen. Thanks for sharing at Mom-to-Mom Mondays.

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    1. Yes, I think that some of these tips could be applied to all parents! Thanks for stopping by!

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Thank you for your comment! I read and try to reply to every one :)