A Break From the Chaos

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caretaking

Losing Part of Your Care Team

When you have children with special needs, you usually have a group of people in and out of your home almost as frequently as you are in and out of different clinic waiting rooms. These folks are your care team, and you learn very quickly that these are the folks who know your kid as well as you do. Inevitably, you will find yourself losing part of your team. But the inevitability doesn’t make it any easier.

When the tears won’t stop

It’s been over a week, and so I think I can get through writing this post without crying.  In the short space of a week, we’ve lost three of our care team members. Two ABA therapists are moving on and the twins’ BCBA who has been with them since they toddled in the clinic doors at 18 months old has found another position.  Now, one of the therapist’s husband got a promotion that required a transfer, so obviously our hands were tied. But I get so aggravated when therapists find another position that usually pays better, not because they don’t deserve the opportunity, because they do, but because our state currently has the lowest Medicaid reimbursement rate in the country.  They have to be able to earn a living, and they work really hard. As a result, the rate of turnover for line therapists is shameful. Especially when you’re dealing with kids with ASD who need consistency. Sorry, soapbox moment that I need to save for our state representatives.

Why it’s so hard

Losing a team member is so hard, for a number of reasons.  First, you know your kiddo is going to have to learn how to be around a whole new person.  And in the case of my guys, I never really know how they’re feeling about things. I don’t know if Speedy is sad, if he really misses JoJo, if he’s confused or angry.  JoJo was with us for the better part of a year, which is really amazing considering the turnover rate of line therapists in our area. She and I got to be pretty good friends, which brings me to the next hard thing.

On her last day, I started crying the minute I got into the car and cried the entire 22 miles to the clinic to pick them up.  She and I just hugged and sobbed together. If there’s one thing I know for certain, it’s that I love people who love my kids. I hold on fiercely to the people who see past the hard stuff to appreciate what awesome little people my guys are. And you tell yourself not to get attached because nobody can stay forever. They have their own lives to live and they do not and should not revolve around your children.  But it happens anyway, this fierce attachment to the people that love your kids. Then they move on to the next thing in their lives and leave you behind. That’s not to say that the next person won’t be awesome as well. We’ve been blessed to have had a lot of really good therapists of all kinds, not just ABA. The day we were discharged from feeding therapy, I cried for hours. When our first personal care assistant found another position, I was paralyzed for over a week, trying to remember how on earth I had survived before her.  When the boys aged out of the state-sponsored early intervention program and we lost our EI and first speech therapist, well, I don’t even remember how I acted because I think I’ve blocked it out. Nobody ever warned me how much grief from loss you experience in this journey. It makes sense that you grieve for various things in your kids’ lives, but I don’t think I could have foreseen how attached I would become to our team.  

How to deal with the losses

I can’t tell you how to navigate these losses.  I think grief is normal and completely valid.  I don’t think it’s healthy to emotionally distance yourself from your team. These are the people, besides you, that know your child best. They celebrate the successes and mourn the failures and laugh at the silly stuff.  For them to do their jobs properly, they have to invest a certain amount emotionally. It’s only fair that you do the same.

As far as supporting your child, I think it depends on your kid. I have a better understanding of how X-man feels when he loses a team member because we can talk it out and I can help him navigate his emotions. But the twins are still largely non-verbal, so I have no idea what their thoughts are when these things happen. I’ve learned to expect some behavioral changes, both at home and at therapy. And I try to give them some extra affection, just in case they need a hug right now. Maybe someday they’ll be able to verbalize what these losses mean to them, but until then, I just try to be understanding.  

don’t hold back

I know this post was a mess in some places, but I just wanted to be honest. I was not prepared for all the FEELINGS. If you’re blessed like I am, you’ll have these folks in your life, coming and going, all the time. Don’t hold back. Love the people that love your kids. It’s never the wrong decision.

Has anybody else had a tough time letting go of team members?  Let me know how you handled it!

Just Got a Diagnosis? Here’s what you need to do

The shock of a New Diagnosis

A few weeks ago, someone I didn’t know was about to become a dear friend told me her middle schooler received a diagnosis of  ASD. I am so glad that now she has an explanation for some behaviors she was perplexed about, but understandably, now she has a lot to process. It got me thinking about some of the things I wish someone had told me those first few weeks. There’s a lot I’d want to say right off, but it would be easy to overwhelm someone new to this whole life.  So I’ve chosen 3 things you need to do right away, 3 things to do as soon as humanly possible, and 3 things you need to do when you’re ready.

What to do right away

Just Breathe 

It’s all going to be ok. Nothing has changed since the day before you got the diagnosis. Not really. You have a label to give things, and some answers, but for every answer, there’s a question. You don’t have to have it all figured out all at once. Stay off the internet (with some specific exceptions), stay off Pinterest, stay off the Facebook groups (just for a little while) and give yourself some space.

Give yourself permission to grieve 

Depending on the severity of the diagnosis, this will happen in varying degrees. Grief is a valid emotion for lots of different life events, not just death. Grief is also a process.  You’ll go through all the stages once you get the diagnosis, and not just once. A friend of mine with a special needs child who is now an adult told me once that you’ll grieve several times over the course of your child’s life. Allow yourself to grieve for the life you thought you’d have, for what your dreams for your child were, and any number of other things, but grieve. You’re allowed.

Don’t be extra 

I know “extra” is a popular slang term right now, but it’s appropriate here. For now, don’t try to do anything extra. Don’t plan a complex vacation, don’t try to start a new job (if you can help it), don’t offer to plan your family reunion, just don’t. Go to work, get the kids to school, go to church (whatever you do, keep going to church), get people fed by any means necessary, but keep it simple. Chances are, your life was already such that you didn’t do much extra stuff, but especially if you have neuro-typical kids, maintain the status quo. Your friends and coworkers will have to understand. 

Next Steps

Now, you may not feel like you’ve got your balance yet and that’s ok, but here are some things you need to do as soon as you can manage it. You really don’t want to put this off until you’re “ready”. The sooner the better, rip off the bandaid, whatever you need to tell yourself to get this stuff done.

Apply for Medicaid/SSI if you are eligible

In our state, there are two types of Medicaid, one for families who are in need of financial help based on income, and another for families of children with disabilities, regardless of income. Every state has different programs and requirements. If you don’t qualify for Medicaid, see if you qualify for SSI benefits. The applications are long and rarely straightforward. But the processing times can be months long, and some therapy providers will only work with Medicaid patients. And you DO NOT want to be trying to pay for therapy out of pocket. Depending on how you got your diagnosis, you should be able to have someone who can at least tell you where to start. For the twins, we had our Early Interventionist who was more than happy to chime in when it came time for X-man, but we also had his pediatrician. We also have a non-profit in our state that provides support to families of children with disabilities. They have a person whose sole purpose is to help fill out Medicaid applications. This is one of the internet exceptions I referred to earlier. You may have to do some Googling, but there’s help out there for these things.

Edit 2/28/20: Since I wrote this post, we have tried relocating away from the state where we live, and it’s been impossible. The waiting lists for Medicaid waivers in most states are absurd. At this point, all I can recommend is to talk to your state agencies and see what your child may qualify for. Some waiting lists are shorter than others, but there are always waiting lists.

Tell your family

Only you know what your family dynamic is. Use your discretion. But it’s only fair to let your loved ones in on your situation, especially if they are in a caretaking role involving your child with special needs. Their lives will change, too. I know my parents will tell anybody that their lives took a whole new direction when I told them that all three of their grandsons had autism. They grieved, they struggled, they adapted, and they are still fantastic grandparents. Not everyone will be as blessed as we are.  They still deserve to know and to have the chance to bless and be blessed by your child. What happens afterward has too many variables to predict, but you’ll always know you did the right thing.

Find someone to talk to 

It would be nice if you already had a friend who is a special needs parent. If you do, that’s great. Go talk to them, as soon as you can. In general, we are a very supportive group of people, ready to let you cry and rage and question. If you don’t already have a person like that in your life, go to whichever friend knows you best and tell them what’s going on. If they’re worth their salt as a friend, they will listen and love you and ask what they can do to help, even if they don’t fully understand what’s going on. But you need someone to talk to. Other parents of special needs kids will show up in your life. You can’t avoid it. But you can’t wait for that to happen before you talk to someone.  

When You’re Ready…

There’s not really a hard and fast rule for when these next three things need to be done, but they do need to be done at some point.

Find a counselor 

Hopefully, you have a wonderful network of friends who love you and support you, and that’s terrific. But there are some things that you need objectivity on.  You’ll need help navigating your marriage because that dynamic will change. You will need support through your grief, as many times as you go through it. You’ll also need advice on parenting because parenting special needs kids is parenting on steroids.  And you MAY need medication to help cope with all the stress and THAT’S OK. It doesn’t mean you’re weak, it means you’re going through a rough time and you need some help. But your family needs you, so do what you have to do. I have a standing order from my OB/GYN that if it ever gets to be too much, all I have to do is call and she’ll send something to the pharmacy pronto.  As of yet, I haven’t needed it, but I think that’s because I know the offer is there if necessary. Get the professional support YOU need.

Find a support group of parents that have a child with a similar disability

You may have one at church, or through your local advocacy non-profit, and that’s awesome.  There’s a ton of great parent support groups on Facebook. Run a search and I’m sure you’ll come up with at least one.  The only reason I don’t advocate this as one of the first things to do is that they can be overwhelming. Be sure, with any group that you join, that you are getting from it what you need, and that you don’t let the group bring you down. I joined a bunch of groups right away and ended up being overwhelmed with everyone else’s problems. I realized that for my own sake, I needed to step back and not try to project everyone else’s situation onto mine. Set your boundaries and keep them strong. If you’d like a place to start, I have created a Facebook group called “A Break from the Chaos” that I am hoping will be a place for parents to connect with each other to provide support and encouragement.

Find (or stay in) a church

Preferably one with a disability ministry, but if you already have a church home, give them the chance to support your family. You may have to do some training but stick with it. Most families with special needs kids don’t even try to go to church (that’s a whole separate post), but you are not excused from your responsibility to “train up your child in the way he/she should go.” If you meet resistance from your current church (and it happens more than I’d care to admit), don’t give up on the whole idea.  There are many out there with dedicated disability ministries who are very welcoming. You just have to find the right match. Again, stick with it. The only reason I don’t mention this as a thing to do right away is that you may have a period of time where the logistics of going to church might overwhelm you. It’s ok to try to find some equilibrium first. And it may take some time for your church to come up with the necessary resources in personnel to enable you to go.  But don’t let that adjustment time last too long. The longer you stay away, the harder it will be to go back.

It’s going to be OK

There are so many other things I would want to say to someone just starting this journey.  But one overarching theme I would hope you can take away from this post is that you are loved, you aren’t alone, and you are enough.  Write it on a bunch of sticky notes and post them all over your house and in your car. Let it be your mantra. To quote the end of Mrs. Doubtfire, “All my love to you, poppet.  You’re going to be ok.”