May 30, 2017

Ten Things to Do After Your Autistic Child’s Program is Set

Posted in Life's Little Moments, My Take on Autism tagged , , , , , at 2:00 pm by autismmommytherapist

It seems impossible, but somehow you’ve crossed everything off your initial to-do list, and your son or daughter is set. Maybe he is now firmly ensconced in an Early Intervention program, and you’ve already booked the eight million school evaluations required to get him into a pre-school program. Perhaps your daughter is older and has just entered a classroom, spent a few weeks there and is doing well. You’ve dotted your I’s and crossed your T’s, and for once there’s no phone call to make, no appointment to schedule. You’ve gotten the help your child needs.

And perhaps as you’re enjoying a latte (which I hope you are, you deserve it), you wonder what’s next.

First of all, make sure you savor the moment. Take the time to celebrate your successful navigation of your state’s Early Intervention system or your school district’s IEP team, and give yourself about twenty hugs and buy yourself a little something fun.

Then take a deep breath, gird your loins, and move on to the next phase of your life with an autistic child.

I remember being at that phase, with my eldest son who is severely autistic being enrolled at three-and-a-half in a full day pre-school program and pregnant with my second child. While part of me wanted desperately to sit in bed all day and watch “Sex and the City” re-runs, I knew there was still a lot to do that I’d put off while trying to get the appropriate services for my child and dealing with our move to a new state. Here are ten things I did (or wish I’d done) after the ink dried on my son’s IEP.

1) No matter how exhausted you are, get your child out in the community. It was a struggle with us with Justin (I have the tiny little bitemarks on my body to prove it) but getting him out so he could have a repertoire of leisure activities was crucial to his happiness and to our family’s. It set him up for a lifetime of being able to try different things, which will set him in good stead when I’m no longer here to take him places. Yes, I’m always planning.

2) If you haven’t already done so, join a parent group and/or your school district’s special education PTA. You will make invaluable connections at both. Try to find parents of kids with your kid’s level of autism as you’re making friends. These people will be a wealth of information for you and a lifeline.

3) If you can afford it, hire an advocate to check out your child’s school program. A fresh set of eyes may see areas that need to improve, or may reassure you that they are doing all they can for your son or daughter. It’s always good to know one in case you need an advocate at an IEP meeting. If you’ve already met you won’t be scrambling to find one.

4) If possible, volunteer at school functions or offer to be a class mom. This is a great way to get to know your child’s teacher and your school’s administrators better. You may also make friends with other parents too.

5) No matter how difficult your child can be, take any offer of babysitting you can and get out. You need a night off from autism once in a while. Even if it’s for a few hours, a break will help.

6) Now that your child’s program is set tackle the big issues one at a time- perhaps it’s sleeping, or eating, or potty training. If your child is in a private school there may be a BCBA on staff who can help you. If not and you can afford it, consider hiring a BCBA from an agency. Pick an issue and prioritize.

7) Educate your friends and family as to what’s going on in your household. Perhaps you’ve been too tired up to this point to talk to people not in the “tribe” about what raising an autistic child is really like. It’s time to tell them and ask for the support you need, even if it’s just an ear to listen. My husband and I kept too much to ourselves, and if I could go back in time I’d be more open with everyone in our lives.

8) Make those doctor appointments for yourself that you’ve been putting off. Just do it.

9) Get involved in an autism walk in your community. It is so powerful to meet so many families like (and unlike) yours. It will give you strength.

10) I can’t stress this one enough- take care of yourself, not just your kid. Autism is a marathon, not a sprint. You owe it to yourself and your child to be whole, healthy, and happy. Do whatever it takes to get there.

 

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December 16, 2010

Stand Up

Posted in My Take on Autism tagged , , , , , at 3:38 pm by autismmommytherapist

We were running a few minutes late (as usual), but my husband assured me as I frantically attempted to find the intake number for the hospital that we’d make the appointment in time, and of course, he was right. We slid into the parking lot with two minutes to spare, and I barked out orders (again, as usual), telling Jeff to grab the boy while I snapped up the gear and raced to the sign-up desk. There was a little validity to my anxiousness, as I’d been instructed on the phone that the first visit required a myriad of forms and questions prior to seeing the psychiatrist, and it was imperative we be punctual. I sprinted up the stairs of what appeared to be a restored mansion and waited impatiently behind another mom who also appeared to be out of breath, and allowed myself a sigh of relief when I informed the secretary of our appointed hour and not even an eyebrow was raised. I’ve learned, after dozens of such visits with my two boys, that the person at these appointments whom you really want to like you is always the secretary.

We’ve schlepped up to north Jersey on this uncharacteristically cold November day because we’re tentatively shopping for a new psychiatrist for Justin. Jeff and I are hoping to find someone not only to dispense and advise us on medications as our current one does, but we’re also eager to think out of the box a bit, and align ourselves with a practitioner who may even offer to enroll our son in some experimental studies some day. It’s not that we don’t like our current therapist, although we’ve had a few issues in the past that have since been resolved (see Summer Solstice for our mental health professional back-story). I had my hissy after the debacle of the “there’s no waiting area for your autistic son, try the hallway” and the situation has since been resolved, including both a shorter wait-time for our appointments and an enclosed and safe area for us during the interlude between patients. That one particular afternoon made me long to ask our shrink for my own Xanax prescription, but the situation was subsequently addressed to my satisfaction, and I’m a big enough girl to forgive and move on.

Sometimes.

That day did make me think however about alternative practitioners, about the wisdom of not remaining with the “status quo” solely because our patient-doctor relationship was comfortable, and equally importantly, because I knew how to find the psychiatrist’s office. Despite the five thousand other things my husband and I need to accomplish during the day I asked him to conduct a bit of research for me this summer, and in July we placed ourselves on the waiting list for one of the more prominent hospitals, and settled in to wait until November for the call that would let us know the date of our pre-Christmas appointment. Here in Jersey, any professional for autism worth their salt requires approximately a six-month wait, and although neither my husband nor I was really jazzed up about wading through two more seasons of Justin’s penchant for tearing things to shreds or flushing expensive game cartridges down the toilet, we knew we really didn’t have an option. Hell, it seems as if every other kid in the Garden State is on the spectrum, and there’s only so many doctors to go around. Jeff and I accepted we’d have to suck it up and wait.

When Thanksgiving came and went without a call however I urged Jeff to phone them again, and after another week and several messages my husband finally made contact. It appeared that after five months of “patiently” waiting, almost half a year of watching my son (and my toilet) suffer despite our behavioral interventions, that the intake people had forgotten to place our names on the list. They had a record of our call, validated our communication with them in the summer, but wouldn’t honor their mistake. We were now looking at an appointment in March at the earliest, with the possibility of an earlier visit if there was a cancellation. This meant my boy would be waiting at least eight months to see this new doctor through no fault of our own. Since it was now almost December, we knew even if we contacted another organization we wouldn’t be gracing its doorstep until summer. Frankly, unless we wanted to try another state, which was just a wee bit impractical for follow-up visits, they had us over a barrel.

To say the least, mommy was not pleased.

In the distant past I would have let this situation go, particularly if it only involved my physical or mental health, would not have felt inclined to make any waves. But this was my child’s health at stake, his well-being compromised because of simple human error. I was aware I might not be able to alter what had happened, but I also knew I just couldn’t sit by and not voice my complaints (okay, outrage, let’s be honest here). Somebody had made a mistake, and come hell or high water, this doctor was going to find out about it. Heck, maybe she’d even venture to her office on a weekend for us to make nice.

Sadly, these thoughts are what comprise my fantasies these days.

So, I called. I got her assistant’s extension, was placed into voice mail, and considered hanging up and waiting until I could speak to a “real” person. Since our past history with this establishment hadn’t been so stellar with return calls I realized I might be the one required to do the dialing, and given my limited capacity to remember anything these days, I knew this might not be the best choice to make. I waited out the recording, and after five thousand instructions from the well-modulated voice of our psychiatrist’s right-hand “man”, I finally heard the dulcet tone encouraging me to leave a message.

And, I did.

I used my grown-up-but-respectful (believe me, I’ve had to practice it) tone of voice, and let the powers that be know the specifics of our problem, and that the error had been on their side, not ours. I informed them that my child was suffering, that even if we went with another agency we’d never see a professional before the end of the calendar year, and that was on them, not us. I asked the void of voice mail to come up with a solution to the situation, sooner rather than later, and let them know that an appointment at Easter was not an acceptable way to rectify this error. Finally, I told them I expected a return call in a timely fashion.

Believe it or not, I got one the next day.

And with a few minor miscommunications later, one in which for two minutes I contemplated the possibility that Justin had missed an almost an entire day of school just so his mommy could drag him to the wrong facility, we did indeed get to see the good doctor, actually a month before we were originally supposed to be seen. She was lovely, believed in waiting rooms AND toys in her office, and gave us two of the best articles outlining the myriad treatments of autism and its ancillary effects that either Jeff or I had ever seen (and yes, we read a lot of them). She had a sense of humor (bonus!), and was compassionate, and perhaps most importantly had a satellite office located no further from our house than our previous mental health professional. Our new psychiatrist even got us out of there in time for lunch at Applebee’s.

In short, she was a winner.

There is a lot of talk about “gifts” with autism, both for our children and for their families, and far more discussion about whether or not the concept is valid or completely bogus. Believe me, there have been many days (and nights) I’d happily put anyone in a choke-hold who proffered up the idea that any of this was “a positive”. I’ve found however that fighting for my children, navigating the labyrinth of IEP meetings, Early Intervention assessments, after-school programs and numerous autism professionals has been a gift to me, has toughened me up, inspired me to make it right for them whenever I can. I won’t always be able to “fix it”, and I’ve come to a semi-peaceful place with that.

But over the years, for my sons, I have finally found my voice. I know, from meeting so many parents and reading their stories over the years, that so many of you have found yours too. I applaud you, and will only stop clapping long enough to pat myself on the back as well.

And as the year draws to a close, let’s raise our glasses, ones which hopefully contain the good wine, and make a toast to each other in honor of never, ever, shutting up.