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5 Things to Do After a “Special Needs” Diagnosis

Preschool girl with Special Needs Diagnosis being held by her Mom

“Mr. and Mrs. Doe, we need to talk.”

These are the words that can take any parent of a child with a disability to a turning point in their lives. For some, it comes even before their child is born, but for others, it comes much later, when their child is already in school and is struggling to keep up with their peers. Regardless of your timeline, the results are in and your child has to be labeled as a child with special needs or has to have the “Special Education” student label.

Now what?

First of all, don’t panic. Sounds simple enough, right? It’s not. As a parent, it is normal for you to panic wondering about so many things, what did I do wrong? What does my child’s future look like? Will he have friends? Any other medical surprises are we going to find? And the dreaded… “I can’t ever die and leave them alone! Who will take care of them?!” As a parent of a special needs child myself, I can relate to all these feelings of panic, helplessness, and uncertainty. So here are a few tips from us at Brighton Center for dealing with the rush of emotions when you first find out about your child’s abilities.

1. Find your tribe

Remember you are not alone. Find people who will listen, provide respite and be understanding and supportive. There are multiple organizations in different US cities, including San Antonio, that are targeted to help individuals with certain disabilities. These organizations can provide resources, and allow you to create connections with people who are going through the same things you are going through or have been in your shoes. Don’t be afraid to reach out or simply ask questions.

If you cannot find an organization for your child’s specific disability, there are also online communities that can be just as supportive! Also, some organizations are extra inclusive and are willing to help parents whose children don’t “match” their diagnosis. Take the Special Needs Diagnosis Down Syndrome Association of South Texas LogoDown Syndrome Association, for example. They invite all children to their events regardless of their diagnosis. As the parent of a child with special needs, you have become a part of one the most supportive and inclusive communities around the world.

We also landed in Holland unexpectedly. Welcome!

2. Celebrate your child’s uniqueness

Your child is unique. You knew this from the start, before the diagnosis, before the label. So, don’t compare them to others! They will do things their own way and on their own time. Sometimes, they may need extra support to reach their goals and that is totally okay!  That is what you’re there for!  To guide them and prepare them to be as independent as possible within their abilities and their strengths. We are all different, and that’s what makes us unique! If your child exhibits certain “quirks” like flapping his hands or jumping for no reason other than them being happy, celebrate it! Join in if you are able. Help normalize that we all express ourselves differently, if your child’s way of expressing his joy is by running from point A to point B repetitively, let them!

As long as they are safe, don’t clip their wings or mute their joy to fit within society’s standards. Who made those up anyway? This will open the door for conversations with other parents who may have similar struggles and have no idea how to handle them. This will also allow you to find more resources and information that may help you or your child navigate life. On that note…

3. Never stop learning

SAISD School Board Meeting

Your journey is unique as well. You may have similar experiences in common with other special needs parents, but at the end of the day, your case is exclusive to your child. The internet is your best friend and can also be your worst enemy. Find reliable sources to gather information on your child’s diagnosis- especially if you’re dealing with a rare disease. You are already the expert, but it doesn’t hurt to learn more.

Take classes on special education rights and laws and become your child’s most valuable advocate. Take notes on how your child responds to certain things. What do they struggle with? How do they regulate? What makes them happy? You know all this, but keeping documentation is a good way to measure progress and give information to the people who interact with them in their daily life. This will make explaining your child’s needs so much easier for you.

4. Live in the moment

As parents, especially first-time parents, we are conditioned to have these grand plans for our children’s lives. However, that cannot always go as planned. Plans changed when you landed in Holland …take the scenery in. Celebrate the small victories- you will soon find that you will look back and cherish these ‘smaller’ victories the most. Be grateful for the things your child can do and the goals they master. If you get caught in the comparison game, remember that even though your child’s progress looks different than his peers’, they are working just as hard, if not harder to accomplish their goals. Remember, all progress is good progress! You are both doing the best that you can.

5. Don’t forget self-care

Last but certainly not least, don’t forget to take care of yourself- you will hear this a lot in this journey and that is because as parents of special needs children, we tend to put ourselves last. We get so caught up in taking care of our children’s needs not only because we love them, but we become little type-A personalities if we were not already: “Things have to be done this way and I’m the only one who can do them right.” Or, “no one understands how my child communicates. I can’t leave them alone with just any babysitter!”.

While this may be true, you MAY need a more specialized babysitter to care for your child, you have to give your tribe the chance to step up to the challenge, this includes your partner. So many times we see a mother taking care of the special needs of a child while dad has minimal clue as to what his needs actually are. Let yourself be vulnerable and allow yourself to accept help. This journey is not meant to be walked alone and sometimes we realize this way too late. Remember, you cannot pour from an empty cup. Taking a daily break, even if it’s just 30 minutes to yourself each day to do something you enjoy, can work wonders. I promise it’ll make you happy and in turn, allow you to be the best caregiver for your child and your family.

In Summary

We understand this journey is not what you expected; it’s hard and it’s not always pretty. At the risk of sounding cliché, we won’t say that you were given this journey because you were strong enough to handle it- You had no choice but to BECOME strong for your child.

Give yourself grace, you are also learning as you go. You don’t have to be perfect to be the best parent for your child, all you have to do is be present.

Brighton Center Child and Parent Smiling

“Brighton offers families hope, caring, understanding, education and every bit of it is 100% from their hearts. Our daughter has benefited from ALL of the services that Brighton has to offer. They have become like another family to us and they will always be a part of our lives.“

MARY RUDY, Lulu's Mom