What I want to tell every mom of a special needs child
December 1, 2018
I’m always hesitant to take on the “Grande Dame” role, even though that’s kind of the purpose of this blog. Nobody wants to be “ the old lady who knows her stuff but doesn’t realize it’s time for her to go away. ” I remember how annoying it was when I was a new mom and everybody wanted to tell me what kind of diapers to use, how to burp my baby, etc.
But when it comes to being the mom of a special needs child, I’ll risk being annoying. Because raising a special needs child requires a whole different rule book, and it’s stuff that only someone who’s been there can tell you.
Because here’s the thing. I was almost 36 when my first child, who was eventually diagnosed with autism spectrum disorder, was born. So I had been adulting for a while. I had also grown up watching my sister deal with many of the same issues in her parenting journey, so I had a better head start than most people.
I had also spent 12 years in the corporate world, working in an environment that was indisputably an “old boys network.” I was achievement-oriented and tough to the point of being cynical.
Until, that is, I brought home a baby that was very different from the one I thought I had ordered. Despite 36 years as an overachiever, I was lost, helpless, sometimes hopeless, and terrified. Things that were supposed to comfort a baby didn’t comfort mine — nothing did — and things that were supposed to make him laugh or smile made him wail instead. And I blamed myself, because if none of the standard parenting advice was working, it must be because I was doing it wrong…right?
So I can only imagine how hard it must be for young mamas who haven’t yet learned that experts can be wrong, or that other parents won’t believe that you’re doing the best you can. Or who haven’t yet developed the confidence (or the old-mama “I don’t give a crap what you think of me”
attitude) to stare down doctors, educators, and anyone else who makes you question your own knowledge of your child. Or who don’t know just how many resources are out there to help if you only knew where to look.
So if you’re already a pro at parenting a child with special needs, stop now and spend your time on something more entertaining. For everybody else, pull up a chair and a glass of wine while I share some things I wish I had known 15 years ago.
What every mom of a special needs child needs to know
You may have a hard time convincing people that something’s wrong, especially if you’re a first-time mom.
First-time parents have no idea what they’re doing. I don’t care how many books you’ve read, classes you’ve attended, or other people’s kids you’ve cared for. None of those things prepares you for the overwhelming responsibility of making Every. Single. Decision.
Or of having those decisions doubted. Unless your child has a visible physical disability, even the most educated, well-meaning doctors are likely to write your concerns off as new-mom jitters or plain inexperience: not knowing what’s normal and what isn’t.
But today’s mamas have something I didn’t: smartphones. I knew from the day I brought my son home from the hospital that something wasn’t right. But since none of the medical professionals we depended on were ever in our home to witness nuclear meltdowns and other behaviors that I knew in my gut weren’t normal, it wasn’t until his 4-year-old checkup that somebody finally paid attention.
When asked to step on the scale for a weight check, he collapsed into a wailing heap on the floor. While the doctor and nurses
were all murmuring, “Oh, no…that’s not normal,” I felt like jumping up and down with excitement. Finally…other people saw what I had been trying to describe.
You, my young mom friends, have smartphones. Record the incidents that bother you, and show them to your pediatrician. I think we could have gotten help a lot sooner if we had been able to provide visual proof.
You may have trouble getting a diagnosis.
This is usually a consequence of misguided good intentions. Some doctors are reluctant to “label” a young child with a diagnosis. And sometimes there are good reasons for that, so listen to what your doctor has to say. But don’t forget that, to get services, you need a diagnosis. And if you think the benefits of a formal diagnosis outweigh any potential risks (and, in my opinion, they usually do), be ready to make your case.
Other moms will think it’s your fault.
Let’s be honest: When people see a toddler or young child refusing to obey, calling their mother every name in the book, hitting and kicking anyone who comes close, etc., it’s not hard to understand why they may initially blame it on a lack of consistent discipline. Even today, when my son is in high school, I encounter teachers who don’t understand why I can’t just “make” him stay after school to retake tests, or to do work for extra credit.
Some days you’re going to want smack these folks. But I encourage you to look at it from their perspective: They have a typical child who responds to typical discipline in typical ways. They can’t imagine a child who would give up any privilege or accept any punishment just to prove to the universe that “You’re not the boss of me.”
“They probably have a typical child who responds to typical discipline in typical ways.”
Seriously, my son once lost game privileges for an entire summer — a week at a time — because he refused to admit he did something even when we showed him proof. When you have a child who cares more about not giving in than anything else in the world, it’s hard to find a disciplinary strategy that works.
Not every child is as defiant as mine (the UK’s autism profile of Pathological Demand Avoidance fits him perfectly), but it doesn’t really matter. A mom who doesn’t have a child with sensory issues isn’t going to understand why your kid dissolves into tears over the snack she provides.
If we special needs mamas are honest, we have to admit that we might act the same way in their shoes. That doesn’t mean you should ever let someone shame or mistreat you or your child; it just means that you should first try to educate them and, if that doesn’t work, stay the hell away from them.
Don’t be intimidated by degrees and titles
One of the bonuses of being an older parent — or just being old, in general — is that I’m not intimidated by much. But it’s easy to imagine how very young parents could find it intimidating to sit in a room full of people with advanced degrees, lofty titles, and years of experience and tell them that they’re wrong.
Most of the professionals you’ll meet throughout this journey you’re making with your child will be well-intentioned. That doesn’t mean they’re always right. They’re busy folks who might not have had a chance to catch up on the latest studies, clinical trials, treatment options, etc. Those with good intentions are almost always willing to take note of fact-based input and to follow up on their own. You probably won’t get an answer that day, but being prepared can ensure that your input is taken seriously.
So read everything you can get your hands on that comes from a credible source. And by that I mean sources like Mayo Clinic , Cleveland Clinic , Johns Hopkins , National Institutes of Health , etc. Blogs (this one included) and parenting forums, as necessary as they may be for maintaining your sanity, don’t count as credible sources when speaking with medical professionals.
Unfortunately, you’ll also encounter professionals who just want you to shut up and go away. And, sadly, many parents do exactly that because they don’t yet have the experience and confidence to do anything else. Don’t be afraid to call these folks out and insist that you and your child be taken seriously. (Again, being armed with facts helps.)
There will be days when your only accomplishment is making it through the day. And that’s OK.
At one point I had an almost three-year-old with obvious behavioral problems but no diagnosis, an almost one-year-old who wouldn’t eat solids and needed breathing treatments every four hours, and a newborn (who, thankfully, was the easiest of the bunch). There were literally times when I got through the days in 15-minute increments. You know what I mean: “If I can just get through the next 15 minutes….”
Sometimes, getting through the day is your superpower. Forget all the other crap people insist you should be doing. (It’s kind of hard to read with your kids when one of them rejects every book by throwing it across the room or struggles like an enraged alligator if you try to get him to sit in your lap.)
If you have a special needs child, do not — DO NOT — compare yourself to parents of typical children. You’re playing a completely different game, because a special needs child affects the dynamics of the whole family. It’s hard to have a peaceful bedtime routine for your typical kids when no one can hear anything over the nuclear meltdown of one sibling. A special needs diagnosis is a family affair.
Remember that your other kids need you, too.
Sometimes that’s a tough order to fill. I’ll never forget the day I had to literally pry my sobbing preschooler (she had had an argument with a friend) off of my body and leave her in a teary heap because her brother was upstairs banging his head into the bathtub.
As the kids got older, the younger two started resenting the fact that they had different rules and expectations than their brother. After many, many conversations, I finally asked them, “If your brother couldn’t walk would you expect me to push you around in a wheelchair just because I needed to do it for him?” That seemed to get the point across. They still didn’t like it, but they got it.
“If your brother couldn’t walk, would you expect me to push you around in a wheelchair, too?”
Now that they’re teens/tweens, they worry that they’ll be embarrassed in front of their friends. Melt downs are much more rare these days, but you can still tell their brother isn’t a typical teenager. Like most kids with high-functioning autism, he’s socially awkward. He asks questions and makes comments that his siblings and their friends think are weird, and he doesn’t have the faintest idea why.
While I understand how they feel, I’ve started to take a tougher line now that they’re getting older. This is our life, and I can’t change it, so it’s up to them whether they have friends over. I also remind them that while it’s hard to be their brother’s sibling, it’s even harder to be him.
My suggestion is to be completely open with siblings about whatever it is you’re dealing with. I strongly believe that, since they have to live with the less-than-pleasant parts, they deserve to know as much as I do. So we’ve had many, many conversations about our situation: how they feel about it, how they think we should handle certain situations, etc. And while they’re well aware that I would never allow them to make their brother’s life harder, I do let them know that any and all feelings they may have about the situation are OK and that they can always talk to me about them.
Knowing your rights and getting the help you need
There’s so much important information to cover here that I made it a separate section. If you take nothing else away from this post, remember these two things:
There are many resources available to your child and, in some cases, to your family as a whole.
You can’t depend on other people to make you aware of these services, even if you’re entitled to them by law. Whether because the people in charge of these programs are overworked or underfunded, it’s up to you to know what services your child is entitled to and to fight like hell to make sure he or she gets them.
Let’s start with the law.
Federal law guarantees your child access to certain services.
The Individuals with Disabilities Education Act (IDEA) will become your parenting bible.
Most people think of IDEA as the law that forces public schools to provide special education services to children diagnosed with an eligible disability. However, even infants and toddlers can qualify for early intervention services . If you’re concerned about your baby’s development, either ask for a referral from one of your child’s doctors or contact your state’s program directly. Your child will be given a free evaluation and, if deemed eligible. will receive free, individualized services through age 2.
There are also services available to help the family as a whole learn how to adapt and how to support a child with special needs.
IDEA also requires public school systems to provide free preschool services for children from ages 3 to 5. Children who have been receiving Early Intervention services will usually transition into preschool services. Often, however, preschool will be a family’s first experience with special education services, since many developmental orders are first diagnosed during these years.
If your pediatrician or another doctor doesn’t make a referral to your local school district, you can request an evaluation yourself. The evaluation will determine whether your child is eligible for services and, if so, which services are most appropriate.
1st grade and beyond: IEPs
From first grade through high school, an Individualized Education Program (IEP) will be the blueprint for your child’s educational experience. It’s far too involved to discuss in detail here, but IEPs typically cover “accommodations and modifications” that will help your child succeed, That could include things like shortened homework assignments, extended test time, and even assistive devices or aides that accompany your child to class.
If your child doesn’t qualify for an IEP, he or she may qualify for a 504 plan . It doesn’t offer as many protections as an IEP, but it can still be very helpful.
It’s up to you to know and fight for your child’s rights.
I believe that most teachers and administrators want what’s best for all of the children in their care. However, some don’t fully understand the law. Others keep an eye on the budget and won’t volunteer a service you don’t ask for. And there are still some old-school teachers out there who think you should just make your child buck up and be like everybody else.
So keep these things in mind:
You don’t have to just settle for what the school offers. There’s a good chance you can get a lot more, but you’ve got to have your facts straight, know your rights, and be willing to push back in a meeting filled with your child’s teachers, at least one administrator, a special ed representative, and a lot of other very educated folks who may assume you don’t know any more than what they tell you.
You may be told things that are inaccurate. I’m using the word “inaccurate” intentionally, because “untrue” sounds like an accusation of lying, when even a lot of professionals just don’t know what they’re talking about. I’ve had this happen at least twice. If you know you’re right and can back it up with documentation, politely call out the error then and there. If you’re not sure, keep in mind that you don’t have to sign anything until you’re ready. You have time to go away, do your research, and come back later.If you want to do some fact checking, one of the best places to start is Wright’s Law . You can also contact your state’s board of education, which is what I did when a teacher told me my child had to memorize a certain set of facts (even though he had clearly mastered the concepts) because it was a state standard. (It wasn’t. In fact, the person who responded told me that not only was it not a state standard, it conflicted with the intent of the state standards.)
You can bring people with you. You’re allowed to invite anyone you want to your child’s IEP meeting: a doctor, a lawyer, etc. Many parents benefit from bringing an “IEP advocate” with expertise both in IDEA law and in the workings of your school district. You can hire a trained professional, but many experienced parents are willing to volunteer their time to attend meetings with parents who are just getting started.
“We don’t offer that service here” is always a red flag. This tends to come up during times of transition, such as when your child moves from elementary school to middle school. Your child may have been receiving a service that the new school doesn’t offer — but that’s no “get out of jail free” card. The school can try to have the serviced removed from the IEP, and they may succeed. But as long as it’s in there, they have to comply, even if it means outsourcing. You can force the issue if it’s really important to you — or you can use it as a bargaining chip.
I think this is the longest blog post I’ve ever written. But I remember those early days, when I was starved for any crumb of information I could get — even with the benefit of my sister’s example to guide me. I remember that the woman who wasn’t afraid to argue with the company CEO felt too overwhelmed and undereducated to challenge the professionals whose diagnoses and recommendations were all over the board.
Most of all, and probably for the first time in my life, I just wanted somebody to tell me what to do. And that’s why I wrote this. I don’t have the expertise to tell anyone of you what to do, but I can tell you what I did as well as what I should have done and pray that someone out there derives some comfort and guidance from my experiences.
And don’t be afraid to get in touch with me directly. This experience changed not just my life, but who I am, and I would like nothing more than to know I helped another mom in this situation. So feel free to comment below. If you’re worried about privacy, I have to approve comments before they’re posted, so just include your email address and I’ll get back with you that way.
Stay strong, mamas. You’re doing something remarkable, even when you feel like you’re doing it all wrong.