fiddledeedee32Some of you know this and some of you may not. My middle child, whom is now an adult, has developmental delays and is considered special needs.
He does not talk. He has a voice and is verbal but he just can’t form words. He can walk but needs a little help because he can get unbalanced. He has been on a G-tube since he was a month old because he was aspirating his food. Meaning, his food was being breathed into his little lungs.
When I was pregnant, we had no idea that he would have special needs or have any difficulty in life. I had a completely normal and healthy pregnancy. No cause for concern. Always a perfect bill of health!
My point is, there’s always the chance that things won’t go as planned. Which is ok. Because no matter what we love our babies! But, it can be stressful and downright scary.
I want to share some things with you so if you’re in the situation currently, or you could be in this situation, I want to help you through it. I want you to know that someone, I, understand! You’re not alone in your journey. I am going to provide you with some basic information that will help you immensely!
Things to purchase.
First off, pretty basic but, you’re gonna want to have a notebook. Keep it with you at all times. When you think of something to say to your child’s doctor, or think of any questions or concerns, you’re gonna want to write it down! I can’t tell you how many times I would think of something to talk to a doctor about and by the time the appointment was over, I would completely forget. At an appointment, you’re gonna be getting all kinds of information and your head is going to be in circles. You will also use this to take notes at appointments or anything you see on the internet, television, magazines etc. that you feel the need to talk to your child’s doctor about. I know it sounds cliché, but trust me and get yourself a notebook! You will be glad you did, I promise. 
Next, I would recommend a three ring binder with pockets and folders. Seriously, a lifesaver! It could be as simple as you want or as cute as you want. It doesn’t really matter. Whatever your preference! But I would recommend at least a 3″ binder (you can always upgrade later if you need to), you’re going to accumulate a lot of paper over the years! You’re gonna want to keep pretty much every piece of paper you get. Doctor’s letters, reports, information on your child’s condition, referrals, receipts, etc. etc. You will have them right at your fingertips to look back on. And if a new doctor needs information from you (which happens a lot), it’s right there all in the same spot safe and sound.
The next item I would recommend you purchase is a laminator. They are not expensive and they come in very handy! You can use it to laminate anything and everything that you want to keep safe. Copies of vaccine records, diagnosis information, medication lists etc. Here is a link of the one I use!
It is totally worth the money! One of the best investments I have made.
Now, may be obvious, but you are going to need a agenda that’s small enough to carry with you to keep track of all of your child’s appointments. With so many appointments, you’ll use this baby a lot!
With these items I have listed, you will be well organized. It will save you a ton of time and trouble.
Resources.
With all that said, now we will get to the subject of resources that you should look into.
First, you’re going to want a case manager. A case manager can be your godsend! They can and will help you with several aspects. Examples would be,: arranging for in-home nursing, scheduling appointments, finding a medical supply store that your insurance will cover, financial aid, etc.
If you sign one on and decide they weren’t the right choice for you, you can go back later and ask for a different case manager. My case manger that I had when my son was small was seriously my angel! She would call and check on us a couple times a month to see if we needed anything. And she was on it! Whatever we needed she got to it right away. She left the company after a few years, and we ended with another.
Now, I mentioned in-home nursing above. This, if you qualify, (which you should with a special needs child) Is a very good resource. Seriously, utilize it! I know it can be a bit nerve-wracking to allow someone into your home to take care of your child. But, It is so much help. When mine was little, he had to be monitored 24/7. I had a nurse during the day for 8 hours and then another for 8 hours at night. I had basically been doing it all by myself for a couple of months and I was exhausted! So the extra help was welcome. And knowing that a nurse was there incase something happened, really put me as ease. I’m not saying it wasn’t hard to get used to or to trust others, but you have to learn to. Once I was comfortable with the nurses, I was able to sleep at night and also, spend time with my oldest child. She was 4 at the time and we had always just been me and her. All of a sudden there was a baby that needed all of mommy’s attention. I can imagine how hard that was for her.
The next thing I want to talk about are The Ronald McDonald charities. They are excellent! If you have appointments out of town you (or your case manager) can book yourself a room, for free! And you can stay there as long as needed. They have a kitchen that you are welcome to that is packed with food, laundry rooms, children’s books, games and even toiletries. They serve meals, if you’re not going to be there you can make yourself something later or have leftovers! They just ask that you clean your room the morning before you check out. That’s it! Did I mention, it’s free? It’s pretty awesome and yes, siblings can stay as well.
Check it out!
Ronald McDonald House Charities | RMHC
Last thing I wanted to touch up on, is support. You’re gonna need a support system. Friends, Church, support groups, parents etc. You’re going to have times when you reach your breaking point. You need someone to talk to, to hold onto and for them to hold onto you and listen to you. Nobody can do it all alone. It’s going to get to where it seems like it’s just too much. And there is no shame in that! It doesn’t mean you’re not strong or that you’re a bad parent. You’re human with a huge load on your shoulders.
Please check out the links below, and maybe bookmark one or two!
Support Groups For Parents of Children With Special Needs (bayada.com)
6 Support Groups for Parents of Special Needs Children (verywellfamily.com)
Parents Anonymous® Adult Group – Parents Anonymous
I hope that I was able to give you some good information today. Please leave knowing you’re a wonderful mother,
that fact that you’re here reading this is proof of that! You are Mom! Thank you for coming by and please do
Come again! Please feel free to email or comment with any concerns or questions!! I will do anything I can to help you!
All my Love,
Angela xoxo
