Resources

First thing that I absolutely have to say… YOU ARE GOING TO BE OK!

I realize that right now your world has crumbled. The life that you imagined has been shattered, but you WILL get through this and you will be OK. Will it be different? Yes, but it will still be beautiful.

I’m pleased to share my best ideas, tips and resources, enjoy!

  • Start by searching for local groups on social media. Doctors are a good source of knowledge, but I, personally, like to hear from other parents who will tell you exactly what they like about certain places and it is always helpful to hear from someone who “gets it”.

    Once you have connected to a local community, you need to find the various resources that you might need. To be honest - there are lots and it seems like not one spot to get to all of them. My suggestion, find your local community service location within your county. Call and talk to them about an Intake. Once you get that scheduled, you can discuss the options with them.

    Third, I would see if there are any state funded programs that you need to sign up for. We are in Texas, and unfortunately, our waitlists for these programs are YEARS long. We put Bradley on right away and still waited years to get any movement. Call and get on each list. If you don’t need it when your name comes up, you can pass, but if you do need it, you don’t want to wish you did.

    Below is a list of the Texas Waiver Lists that is imperative for you to be on….

    MDCP (Medically Dependent Children Program)

    TxHML

    DB/MD

    HCS

    CLASS

    Star+Plus

    I will be posting more on these, but you will need to look at each one and see where you fit. If you even question it, SIGN UP!

  • If you have any concerns with your child’s development, it is important to set up an evaluation at a local therapy location. There are many options: hospitals, clinics and they all have their pros and cons. Reach out to local FB groups asking who they love. The most important step is to go ahead and call and get an appointment scheduled for an eval. Sometimes they are a couple of months out and you need to get on the schedule at least for now. Once there, they should review benefits with you and you can get a gut feeling for the location. I have trusted my gut for years. I have only had to switch therapists one time, but have moved around to different companies due to locations, schedules etc. My point: TRUST YOUR GUT!! It will usually lead you in the right direction.

  • Look into your community services. Typically, they are divided up by county.

    If your child is younger than 3 years old, you should contact your local Early Childhood Intervention.

    If your child is 3 years old or older, you should contact your local school district, as they can begin services at that age.

    Don’t be afraid to call and ask questions - to anyone. I have learned so much from random classes that we took. Anytime we heard about a class, we took it.

  • As you get close to the precious age of 18, it is terrifying for us special needs parents. Keep in mind, there are other options other than guardianship, like POA, Supported Decision Making, etc. I would suggest you start with doing some thinking about the future of your kiddo - realistically, then start looking into attorneys that handle special needs guardianship. They will have the most up-to-date information and will help guide you with the options. Personally, I would look for one that provides a complimentary consultation before paying for one.

  • We all need support and that is OK.

    Life is hard - A Special Needs Life is HARD. You are strong and you CAN do this. If you need support, please reach out and email me.

    Start here and try to find local resources for caregivers…..

    CDC - Supporting Caregivers

Welcome to Holland - By Emily Perl Kingsley

When you’re going to have a baby, it’s like you’re planning a vacation to Italy. You’re all excited. You get a whole bunch of guidebooks, you learn a few phrases so you can get around, and then it comes time to pack your bags and head for the airport.

Only when you land, the stewardess says, “WELCOME TO HOLLAND.”

You look at one another in disbelief and shock, saying, “HOLLAND? WHAT ARE YOU TALKING ABOUT? I SIGNED UP FOR ITALY.”

But they explain that there’s been a change of plan, that you’ve landed in Holland and there you must stay.

“BUT I DON’T KNOW ANYTHING ABOUT HOLLAND!” you say. ‘I DON’T WANT TO STAY!” 

But stay, you do.

You go out and buy some new guidebooks, you learn some new phrases, and you meet people you never knew existed.

The important thing is that you are not in a bad place filled with despair. You’re simply in a different place than you had planned.

It’s slower paced than Italy, less flashy than Italy, but after you’ve been there a little while and you have a chance to catch your breath, you begin to discover that Holland has windmills. Holland has tulips. Holland has Rembrandts.

But everyone else you know is busy coming and going from Italy. They’re all bragging about what a great time they had there, and for the rest of your life, you’ll say, “YES, THAT’S WHAT I HAD PLANNED.”

The pain of that will never go away.

You have to accept that pain, because the loss of that dream, the loss of that plan, is a very, very significant loss.

But if you spend your life mourning the fact that you didn’t get to go to Italy, you will never be free to enjoy the very special, the very lovely things about Holland.