I’ll start by saying that I know what a hard road this is. Finding resources for you and your child, and more importantly fighting them, will not be an easy task. There are a number of programs available, and there isn’t a one size fits all model, unfortunately. Services available vary, sometimes dramatically, depending on the state where you reside and the age of your child. The first rule in this entire journey fighting for your child is Document, Document, Document. Make sure you document each and every person you speak to and when you did. Document what you discussed, what if any follow up has been promised to you or that you’ve promised to do and when you’ve agreed to reconnect. You can keep an online document with all the information, or use a notebook, whatever way works for you. These records will come in handy because as you move forward your head will be swimming with information and having notes, names and dates to refer to will help you keep track of it all.
Your pediatrician: Your pediatrician should be the first stop. They should be able to point to you to local resources based on your child’s diagnosis. Start with what your pediatrician gives you. You will meet roadblocks all along the way, so don’t stop there.
Non-Profits: When looking for help, start with the state chapter of groups that supports your child’s specific diagnosis (i.e. Autism Support Network, Down Syndrome Society etc), or something more general, like Easter Seals. They can lead you to a local chapter and are usually an excellent source of information. Not only will you be able to get information about what you may be facing with your child’s individual disability, but they will know what resources are available locally to support you and your child. These supports can take a variety of forms, far more than I can reasonably list here.
Early Intervention Programs: Your state is responsible for furnishing early intervention services for children under the age of three. A solid state by state list of where you can contact to find these services in your state are located at the ECTACenter.
Schools: Under this category, I’m now assuming that your child is at least three years of age (or close to it). If they are under the age of three, refer to the Early Intervention Programs section above. My experience, and yours may vary, is that you should be contacting your school system in writing at least six months before your child turns three if they are going to require services through the school system. It never hurts to get the evaluation that the school system must provide. If your child has been in an early intervention program, you will want to be doing this. At the age of three, the school district will take over early intervention services. The services can/will include PT, OT, speech and other services as determined necessary by you and the school district. As the years go on, they should be assisting you with finding resources, especially for the child about to graduate or age out (transition services). My experiences with school referrals have unfortunately been somewhere between useless and non-existent. There have been singular random referrals that were beneficial, but don’t count them to supply more than the bare minimum they are required to. Dealing with the schools on IEP’S AND 504 plans is a whole different post I’ll have to write another day.
Support Groups: I will be honest. In-person support groups just never worked for me. I know lots of people who benefitted greatly from them. I don’t discount them at all and usually the local groups we talked about above can direct you to groups that are meeting in your community. Online support groups however provided me with all sorts of resources and answers I could use to help my child. Years ago the large majority of the support groups I found were on Yahoo Groups. You can search by any disability or just search for under special needs, and you’ll be amazed at the variety of groups for you to join! Of course, Facebook has a myriad of groups as well. Some groups will be very generic, others can be incredibly specific to diagnosis, location, etc.
Google: All things start with a google search, or so it seems these days. I didn’t have the luxury of this resource when my youngest was born. As she was older, I would never found many of the services I needed for my daughter without Google. My one piece of advice, don’t search a single term and assume those are the only results you’ll get. Changing the words, even though, the search should otherwise be ‘the same’ can yield very different results. Experiment. It’s free, and it won’t break the computer. You never know what will come up that will either be what you need or send you in the right direction.
The biggest things to remember:
- Nothing worth getting comes easily. Take a deep breath and keep moving.
- Kindness works. My mom used to say you get more flies with honey than vinegar. Now that doesn’t mean don’t be firm, it just means don’t lose your cool. Nobody wants to help a person who is yelling at them or worse.
- Dogged determination. Some days you’re just want to throw your hands up and give up. Feel free to give yourself a time to have a small pity party. Getting that frustration out helps you double down the next day.
Hopefully, this provides you with some jumping off points on your journey through the wild jungle of services out there. The following is NOT an all-inclusive list, but rather where I found was the best places for me. Feel free to leave your suggestions in the comments below.