Family Voices Indiana is a family-led organization that provides information, education, training, outreach, and peer support to families of children and youth with special health care needs and the professionals who serve them.
Thursday, February 18, 2016
What to Do when your Child is Diagnosed with a Disability
Most moms will tell you they remember it as if it was yesterday…the day their child was diagnosed with a disability. It’s devastating–there’s no way to sugar coat it. It’s awful and I wouldn’t wish it on anyone. But for as devastating as that time in our life can be, it can also be very confusing. 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?
The one thing I wish–I wish that someone had handed me a list like this. I’m a solution-oriented person by nature, and if I had been handed some action steps of what to do, I would have felt more in control. Because it certainly felt like my life was spiraling out of control. So here are some things that we did, or eventually got around to doing….but we did them piece by piece. It’s a long road ahead, wouldn’t it be nice if we could predict some of it?
Grieve. Or at least acknowledge that you are grieving. Certainly life cannot stop until you pull yourself together. Jobs, school…life will march on. But you still must acknowledge and deal with the losses, because there are losses. And even once you’re over the bulk of your losses and have adjusted to your new reality, the grief will strike you at unexpected times and places. But you have to acknowledge your losses and the emotions associated with them, and stay away from heavy decision making until your head is clearer. Your relationships with your extended family is also going to change slightly, depending on the situation. But you can still keep your extended family involved, and take the extra steps needed to keep them close to you if you are close. Learning that your child has a disability is way up there as far as stress and trauma with “death of a spouse,” “death of a child/parent” and job loss.
Acknowledge your vulnerabilities. We are a very vulnerable population-special needs parents. 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 on our situations. Until you’ve been in this situation, the feeling is really indescribable. There are times that 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 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 kid.
Submit yourself to being on the learning curve. One of the most frustrating things is to not know. 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.
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.
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. If 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 sometimes it does. Line up three.
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.)
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 closer to 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.
Resign yourself to a lifetime of IEP meetings. If it’s applicable of course. Not every child with a disability needs an IEP, but if your child does, suck it up and resign yourself to being 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. But I’ve also 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.
Re-evaluate your employment situation. I have read the statistic many times–that 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, taking advantage of FMLA while you take care of business…all options should be considered. Sure, even keeping things as is for income and for normalcy-maybe that is what is best for you right now. Just make sure you evaluate the situation and discuss it together so that no one is overstressed or overwhelmed.
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 10 years ago.
Re-evaluate saving for college. In some cases, college may just no longer be a practical option. And that’s ok. In some cases, college is still an option, but it may just have become even more expensive because of the added supports your child may need. In some cases, the child is still able to fulfill his/her dreams, it may just take longer and need more adjustments.
Find your tribe. As I stated earlier, I think it’s important to keep your extended family involved, as well as close friends. But you are going to need a tribe of people who “get it.” People who are also walking in these shoes every day. People you can vent to, people you can bounce ideas off of, learn from and cry with. 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.
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. The daily sadness will dissipate and you’ll find that you are in a circle of some amazing parents who you would not have otherwise met.
Remember, we cannot change the cards we are dealt…only how we play the hand. Take care and I’d love to hear any additional comments from parents who have been on this journey for a while.