What to Expect (and do!) When Your Child has a Disability

For the Newly Diagnosed With a Disability

Welcome! None of us expected to be here, but here we are. And I’m here to tell you, that you are still going to have a rich, rewarding, full, and enjoyable life. I mean that! Please don’t let anyone suck you down into that world of “perpetual grief.”

Lucky for you, you came to literally one of the best places online for support and assistance. Because yeah, dealing with schools and insurance companies sucks. Not all the time, but enough to be annoying.

What to Expect when Your Child is Diagnosed

Recently I read another blog post about grieving and ableism from Moms: Grief isn’t “natural” – it’s a product of ableism.

As Moms, we are taught to grieve when we receive our child’s diagnosis, right? I remember the ob/GYN nurse talking to me about prenatal testing. It would give you the opportunity to mourn the loss of your typical child and begin to prepare for a life with a special needs child.

Wow oh wow oh wow. Eleven years later it still floors me. My own ob practice told me that I should mourn my child’s existence.

Reading back on this, I can now say that I accept and embrace and celebrate my son. Despite everyone else telling me that this is a horrible thing. It’s not.

You will be told that it is. You will be told this over and over and over. It’s important to not get stuck in this space. Online, I see literally millions of moms stuck in this space.

Being disabled is not horrible and devastating. How our society treats disabled people is. Please do not allow yourself to get stuck in the sad, weeping, crying, wallowing space….and trust me, there are MANY of these communities online.

There is often a huge disconnect between doctors and educators and the service providers who are out there for our kids. During the days after we learned what our new life was going to be, I remember at times feeling manic like I had to do everything at once.

And at times not even wanting to get out of bed. And everything in between.

So what do you do when you learn that your child has a disability?

My Child Has a Disability

The first thing that I want to tell parents is this. Don’t let others tell you that you have to be sad. You don’t have to be sad. This is the same child in front of you.

Mind you, I’m only talking about developmental-type things. My son has some serious medical issues that I would give my right arm for. But as far as his developmental issues, so what? So what if he’s different? If you can’t deal with it, that’s your problem.

But your life will be different. And that’s ok. Here are some things to expect.

Newly Diagnosed With a Disability

1. Acknowledge your vulnerabilities. We are a very vulnerable population. And there is a whole ‘nother group of people willing to exploit that. From miracle cures to terrible and exploitative investment opportunities, there are lots of people out there willing to profit from our situations. Until you’ve been in this situation, the feeling is really indescribable. There are times when you will be more vulnerable than others. But try to remind yourself to enter into decisions and agreements with a clear head. Research everything that you are doing from picking health care providers and schools, to long-term financial plans. If it sounds too good to be true, it probably is. I have witnessed several families bankrupt themselves in hopes of “fixing” their kids.
2. Submit yourself to be on the learning curve. One of the most frustrating things is not knowing. To not know how to help my son. To not know the intricacies of his condition. So many mornings I’d wake up and think “just today, I want to be able to say ‘oooh! I know this one!’ ” when faced with a challenge. From IEPs to specialists and medications and new places and new faces, there is going to be so much to learn, so much you don’t know. Pace yourself. You can’t learn everything in a day or a week. But acknowledge and deal with the stress that comes from constantly being on the learning curve.
3. Find your people. I think it’s important to keep your extended family involved, as well as close friends. But you are going to need a group of people who “get it.” People who are also walking in these shoes every day. It doesn’t necessarily have to be people who share your child’s condition and it may be online rather than in person. It may or may not be the first group you connect with. But you will find a group of people that is a good fit for you that will serve as a support network.
4. Get a will, life insurance, and special needs trust. This is the stuff no one wants to talk about, but it is so important. You need to make sure that your significant other and all of your children are taken care of in the event that something should happen. If your child is diagnosed with a significant disability, you may be facing a lifetime of care. Children with disabilities are often more expensive to raise. Life insurance for you and the other parent is essential. You should also read up on Guardianship for an Adult Disabled Child.
5. Find three sets of “new” parents to take over as guardians. Yes, you read that right, three. I have a friend who works in this industry and she says that you would be surprised at the number of people who are listed as guardians in someone’s will, and then they feel they can’t do it so they decline. It often takes three sets of people because the first two say no. Sure, they said yes when you were alive. Because no one thinks that the worst is going to happen. But it does. Line up three.
6. Double-check your health insurance and apply for Medicaid for the child. You want to re-read your health insurance coverage and make sure it is adequate. Also, in many states, regardless of your income, a child with a disability may qualify for Medicaid. I am genuinely surprised at the number of parents who will not apply for Medicaid due to the stigma of being on “medical assistance.” MA has saved us thousands of dollars. It would be irresponsible of me to my other child, to spend our household money on things when I really don’t have to, just because I don’t want people to know I’m on MA. See if you qualify and apply (insider tip: they always turn everyone down the first time, if you are declined, appeal.)
7. Re-evaluate your living arrangements (and vehicle). It was always our plan to have our boys share a bedroom growing up. Now I think that it’s better for both if they have their own rooms. This will mean some minor modifications to our home. If your child is going to need a walker or wheelchair or other apparatus, start looking around as well as applying for grants for home modifications. I’ve written before that I’m generally not a fan of moving for the sake of an IEP. However, depending on your child’s disability, you may need to be closer to a children’s hospital or resources that your area currently doesn’t offer. You have to carefully select new medical providers and they may not be close to your home. Maybe your home sits high up on a hill with lots of stairs that just became really impractical. Or maybe you are near a lake or ocean and no longer feel safe with a child with impaired decision-making ability. Think about what your child will need and plan ahead. This would apply to a wheelchair-lift vehicle too if that is on your horizon.
8. Embrace a lifetime of IEP meetings. Not every child with a disability needs an IEP. But if your child does, suck it up and be the best advocate you can be! There’s a reason most IEP moms shrug, sigh and roll their eyes when you mention IEP meetings. They really stink sometimes. I’ve seen many moms get caught up in the “this is so unfair, why do I have to go to IEP meetings?” My mantra–focus on what you can control. I have to spend the next 20 years going to IEP meetings, I am going to do my best for my child and THRIVE. Learn all you can and it won’t be as frustrating.
9. Re-evaluate your employment situation. Many moms of children with disabilities are unemployed or underemployed. The reason is that for the most part, the community supports just aren’t out there. I’m not suggesting you march in and quit your job today. But you have to re-evaluate as your family’s needs change. Maybe a new job closer to home, working from home, moving to part-time, or taking advantage of FMLA while you take care of things. All options should be considered. Sure, maintaining the status quo for income and normalcy might be what is best for you right now. Just make sure you evaluate the situation and discuss it together so that no one is stressed or overwhelmed.
10. Develop patience for the hassles. Sometimes I want to scream. And yeah, sometimes I do. Dealing with the hassles of pharmacies, insurance companies, medical billing, and all that….it’s a huge pain in the ass sometimes. Now I just set aside time on my calendar when I need to do it, and mentally prepare. I spent almost a year doing an intense series of insurance appeals, and it was a whole new world. But I think you’ll look back and be proud of how patient and tenacious you’ve become.
11. Re-evaluate your retirement. My child will likely need a lifetime of assistance and never be fully independent. As painful as it is to think that, I have to be practical. My retirement now looks very different than it did 13 years ago.
12. Plan for the future. Because the future will come, whether you want it to or not. Sit down as a family and establish a vision statement. Your child should be participating to the maximum extent possible. Self-determination is always the goal!

Lastly, breathe and know that it’s going to be ok. You have just received some overwhelming news. And now perhaps I’ve given you an overwhelming list.

This list isn’t designed to be done in a day or even in one year. It takes time. You will look back and see a list of challenges that you’ve overcome that you would have never thought possible. You will fit into your new reality.

You’ll find that you are in a circle of some amazing people who you would not have otherwise met.

Remember, we cannot change the cards we are dealt, only how we play the hand. While I will always wish that my son is 100% healthy, I love that we have this life. I love the people we’ve met and the personal growth we’ve experienced.