A Break From the Chaos

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Autism

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.”

A Day in the Life

Hi, all!  It’s almost 9 on a Wednesday night and I was hoping to turn in a little early, but my brain is in hyperdrive, so here I am.  I thought it could be interesting, or at least informative, for me to share what a typical “day in the life” looks like for us right now. All this will change when summer comes and then again when school starts and X-man begins kindergarten (I can’t even think about that right now), but for the moment, it goes a little something like this.

Good Morning!

On a good day, the kids sleep until 6, but frequently the twins are up at 5 or earlier. We want them to learn to stay in bed until 6, so we let them play quietly in their beds until we get them up. Then we hit the ground running because the twins have to be changed, fed, and dressed by the time their bus comes at 6:45. After the bus comes, the rest of us have breakfast and get dressed. Dr. S heads off to work about 7:20 and I do a few chores with X-man until it’s time to take him to preschool at 8:20. I get home at about 9:15, unless I pick up groceries at Walmart, then I’m a bit later. I try to do my chore-of-the-day when I get home, but sometimes I just sit and be quiet for a bit. The twins’ bus comes at 10:20 and if the weather is good, I boot them out into the backyard for a while. Our backyard is like Disneyland. We’ve got a great swing set, a jungle gym, sandbox, and a huge trampoline, which is by far the favorite apparatus.

Busy afternoons

Anyway, we leave for therapy next, usually around 10:50 so we can get there at 11:30. I drop the twins off at ABA and then head to pick up X-man at 12. Then we either run errands or head home until we pick them back up at 3:30. We get home a little after 4 where our awesome Personal Care Aid (PCA) is waiting for us. She takes care of the boys while I get dinner going. Since all my guys have a variety of food allergies, sensitivities, and general picky-ness, I usually fix the boys their dinner and then more grown-up food for the three adults. The kids eat at about 5:15, then the adults eat around 6 if we’re lucky. All three deal with texture aversion and fine motor delays, so it’s usually a 1:1 feeding scenario. X-man can feed himself most of the time, unless it’s something that’s “not his favorite”, then we usually have to feed him just to avoid the meltdown. The twins are getting better with utensils, but will still end up with more on them than in them and they lose focus quickly.

Is it bedtime yet?

After dinner, we let the kids play for a bit before baths.  Bath time starts at 6:30 and we’ve usually got everybody in bed by 7:15.  We get things cleaned up, eat dinner if we didn’t get a chance to earlier, and then collapse until we go to bed around 10. We get a full night about 85% of the time.  There seem to be phases the twins go through where we have a week or two when they wake up in the middle of the night every night and Speedy especially is not good about going back to sleep.  Then we’re back up at 6 to start all over again.

Phew!

In general, I can drive between 600-800 miles a week (I actually call myself a stay-in-car Mom instead of a stay-at-home Mom!)  We live way out in the county, so we have a pretty sizable drive to get to all our therapies. When X-man starts kindergarten in the fall, that’ll be a whole two hours of my life back, and I have no idea what that will feel like.  Maybe I’ll get to exercise and have a Bible study. I hardly dare hope!

Well, that’s it!  That’s a glimpse of what our lives look like from day-to-day. What do your days look like?  Let me know!

The Question I’m Always Asked

If there’s one question I’m constantly asked once people find out about my boys, it’s “They’re so young!  How did you know?” In order to answer that question, there’s some background you need to know. (Cue wavy flashback lines)

My First Pregnancy

I had a relatively normal pregnancy with X-man, except for some gestational diabetes, which obviously isn’t fantastic, but isn’t all that uncommon. Because of the GD, my OB decided to induce a little early due to his projected birthweight.  The problem was that he didn’t handle labor well and his heart rate dropped, which prompted the decision to do an emergency c-section. Again, none of this is terribly unusual, but it’s vital to what happens next.

Surprise!

When X-man was 7 months old, surprise!  I was pregnant again. And surprise again!  It’s twins! Oh, and surprise! You have a genetic clotting disorder and need blood thinners, and surprise!  We’re seeing a genetic marker that could be Downs Syndrome, and surprise! It’s preterm labor at 28 weeks and you need to be on bed rest.  While X-man’s pregnancy was textbook, it was pretty obvious from the beginning that the twins were in for a bumpy ride. Finally, at 34 weeks, when they were both projected to weigh over 6 lbs each, and when I went into actual labor, my OB decided to deliver them lest I hemorrhage at the first c section incision.  She assured me that she didn’t make the decision lightly, but that the boys would be fine and more than likely need a little TLC, but nothing major.

She was wrong.  To be clear, I harbor no resentment for how it went down. She had no clue it was going to go like this. They were born barely breathing. I saw them for 20 seconds after they were born and they were whisked to the special care nursery before their imminent transfer to a different hospital with an actual NICU, where they spent the next two and a half months. We were in and out of ICU so many times after they came home, we knew all the nurses.

It doesn’t get any easier

Needless to say, at 12 months, I was unsurprised when the pediatrician told me he feared they had considerable developmental delays and referred us to the state program for early intervention. This is when things started happening again. Our fantastic EI (Early Interventionist) watched them during our first session and asked things like, “How long does Crash spin in circles like that?” And “Does Speedy try to spin every object he comes across?” Then my world came crashing down. She asked, “Meg, have you ever considered that they might have autism?” Now, I taught middle school music for 6 years. There wasn’t a single year I didn’t have at least one student with autism, so I wasn’t unfamiliar with what the ramifications of two ASD kids would mean. But it didn’t take long for me to start seeing what she was seeing. It changed our approach to intervention, to speech therapy, to occupational therapy, to everything. We reorganized the house to be safe for two kiddos who could climb before they could walk and had no concept of danger. We made the decision that I wouldn’t be returning to work for the foreseeable future. I learned how to function on next to no sleep.  And we had to learn to hold loosely to our dreams for our kids’ futures.

wait, there’s more

In the midst of this, that same wonderful EI had been getting to know X-man.  After a while, she floored me by asking the same question she had asked before. “Have you considered that X-man has ASD?  He’s on the more high functioning side because he’s so verbal, but here’s what I’m concerned about…” And she went on to talk about scripting and the rigid structure, the meltdowns, and the limited interests, the lack of eye contact and the inability to carry on a back and forth conversation.  If my world came crashing down before, this time I was devastated. For lack of better verbiage, I had believed I would have at least one “normal” one. Just one that would develop normally, that would grow up to live a normal life with a job and a family and would be able to look after his brothers in our old age.  And so I had to face a new reality. I was the mother of three autistic toddlers. Everything I dreamed about when they were babies was going to be different. Milestones would be measured in inches. It wouldn’t just be us raising our kids, it would be a team of people, from therapists to teachers, doctors to bus drivers, and it would be up to me to make sure all these people worked together. IEP meetings would take all day.  And we’d watch as friends fell to the wayside, through no fault of their own, simply because our lives were just so different.

Keep moving forward

And so here we are. The twins were diagnosed at 2 ½ and X-man when he was 4. The twins started therapies at 14 months and X-man at 3 ½. We praise God for that pediatrician who gave us the referral and for that EI who wasn’t afraid to ask the hard questions. We are so fortunate that we caught this early and that we could start helping them get the best start possible. We’re blessed to have a loving church family who is facing this life with us head-on and is willing to learn how best to love and minister to our kids.

I’m sorry for the long post, but I felt it important to share.  If you’re still with me, thank you for reading our story. Feel free to contact me with your own!