When you’re a parent of a special needs or adopted of kids who struggles you’re life is stressful, to put it mildly. And navigating the professionals who you need to deal with in order to get your kid and your family the help you need can feel like an unscalable mountain at times. These people hold the keys that you need to unlock the door to services and support that can make your life manageable – or at least, more manageable. So figuring out how to best go about interacting with them can make or break your family.
I’ve been in the trenches for the past 13 years, having adopted and cared for 7 kids. And to be honest, the “support” system has been one of the most challenging parts of this journey. And that is saying a lot, because several of my kids have had serious mental health issues that at times put our family in crisis. But trying to get them the help they needed was often times the thing that dragged me down the most. At least I could empathize with the kids because of what they’d gone through, whereas the disappointments from professionals seemed senseless and cruel at times. Through my own trials and tribulations I want to share with you a few of the thing I’ve learned the hard way.
You will encounters so many “experts” who insist that they have the answers you need. And they might, but they also might have issues themselves, simply not holistically understand the challenges your kids are facing or not be nearly as informed as they think they are. My number one piece of advice is that you should learn to trust your gut in all dealings with professionals who intersect with your family. If their plans or suggestions seem off, trust yourself that you know best. It’s easy to second-guess yourself, particularly when you’re in a crisis. But you know far more about your child and family than they do and if you’ve been thoughtful and done research, you are the ultimate authority on what your child needs.
Probably the biggest mistake I have made in working with professionals who were supposed to help our family was just that – treating them like professionals who were supposed to help our family. I naively assumed that the would treat me like a competent and caring parent and that my concerns would be taken seriously. I did not put on a “happy” face for them. I told it like it was. When I was frazzled at what was going on at home or decisions they were making, I tried not to be rude, but I also didn’t pussyfoot around them. Looking back, I can see now that I needed to treat each and every interaction with my “support” people as if I was on an important job interview. I needed to put my absolute best face forward, stay entirely emotionally neutral and say more positive things about my kids. I give this advice with the soul crushing weight that you’re probably experiencing reading it. When we are in crisis or when awful decisions are being made about us, why should we rally scarce energy to managing them? Shouldn’t they be helping us? Yes, in an ideal world they should be. You should be able to vent and be as you are. But many will then construct a narrative around you that you are the one who is unstable, you are the one who just doesn’t “get it” or love your kids enough. And that story is nearly impossible to shake once it gets rooted in their minds. Almost no amount of reverse engineering will get them to see past their initial assessment of you. And they will tell others with whom they work that same story and poison the well before you even meet them. These professionals should be treated with the utmost care like delicate glass slippers. Putting your energy into managing their perceptions of you is of the utmost importance. It can make the difference between getting what you need or getting blamed for the problems.
That being said, this does not mean that you should blindly agree with everything they say. In fact, it will often be the opposite. What I’m referring to above is just how you comport yourself during interactions with them. If you treat them as if they are the ones who hold the keys to the kingdom, you will likely get farther than if you simply expect them to do their jobs as they are supposed to. Certainly there are those professionals who you don’t have to put up a brave front for, but I would recommend doing so with all of them regardless. There was one social worker in particular who I had known for years and thought of as a friend. A freedom of information act request with my local social service agency revealed stunningly judgmental and painful notes he had taken on our conversations. He was not my friend after all. It was shocking and incredibly hard to read what he’d said about me, but in retrospect I realize that I was delusional to think that I could really trust anyone in that system to understand me as a person, rather than as a client. He was a professional in the system and I should have understood that.
Another important point is that you should thoroughly document everything that you can from all aspects of your child’s care. Keep records of all diagnoses, evaluations, discharge summaries, therapeutic interventions and their outcomes, medications past and present, emotional and behavioral challenges, emails from professionals, notes from meetings and conversations, etc. Get yourself an accordian style file system that can be taken with you to appointments. At the very least, take pictures of important documents, archive emails and make notes in your phone. If there are meetings with professionals where there is too much coming at you at once or who you do not trust to be honest or report outcomes fairly, audio record interactions according to laws of your vicinity. I started doing this and felt that it held our social workers to a higher-standard of accountability than they would have had otherwise. Do not expect that workers and others will have kept track of your child’s case notes, etc. Too often they were either lost in the shuffle or not even looked at. Without my being able to provide proof, my description of a situation/outcome was likely to be entirely discounted.
Once you put on that cool and collected air and keep excellent documentation, the next step is to make sure that you know your stuff. Do not rely on the professionals to understand all the options or present them to you even if they know about them. We found that time and again misinformation was given to us or programs that may have been a good fit weren’t even brought up. We had to do the research ourselves, which is challenging. And even when you find out the information they often need to be the one to make the referrals. As much as possible, collect the information on the programs or services yourself, determine eligibility and understand their admissions process. When attending meetings it will be extremely helpful to have all this handy so that time is not wasted while workers or other professionals “get back to you” on that.
When working with therapists, I advise doing a phone interview with them in advance of potentially wasting your time with in-person meetings. Your time is extremely limited and a good number of therapists will not end up working out. Questions to ask include such things as – what experience do you have working with special needs, trauma and attachment? What are the approaches you take? What is your philosophy with involving parents in treatment plans? If any of the answers to these questions raise a red flag for you, move on right away. And again, trust your instincts. I once went to the “premiere” attachment therapist in my city only to have her become incredibly shaming and even a little unhinged during sessions with me. So all the time and effort I put into paperwork and developing a relationship with her was washed down the drain, not to mention that my attachment challenged kids had yet another failed relationship.
For doctors, some similar cautions are recommended. Doctors may not be aware of various issues that are unique to our kids or can be naive, unhelpful or send you down the wrong path. Sometimes they can push you to try things that you’re not comfortable with, such as medications with high side effects or increasing or lowering doses in a way that doesn’t seem right. Sometimes they simply won’t know about various conditions that it seems like they should, such as the high incidence of ectopresis in traumatized kids and how to get a handle on it. Look for a pediatrician who has experience with special needs kids (they do exist, mostly in larger cities!). If one is not available, be sure that you are not feeling pressured or uncomfortable when you meet with them and that they are willing to actually listen to what you have to say. As with all facets of parenting our children, do your own research before you come in and insist that the doctor hear your opinions.
Meeting your child’s educational needs can be particularly frustrating. Teachers and parents often have very different experiences with children, and financial constraints of the school can push them to deny resources that your kids need to succeed. First try to work with the teacher and other support professionals (counselors, social workers, etc.) to plan for your child’s success. If that proves fruitless, speak with the school’s administration. If you feel you’ve hit a wall, consider alternative schooling options, such as homeschooling, smaller schools, online education and hiring tutors. And as with above-mentioned advice, be sure to document everything.
If you are lucky enough to have friends and family who don’t fade away, gently educating them about your child’s issues could be helpful. Taking a hard and honest assessment of what they can and cannot handle is always a good idea. Many people are just not able to be there for us. I often feel frustrated thinking, “I’m living this! Why can’t they even handle hearing about it?” I try, sometimes successfully, to not be judgmental of that but realize that we live heavy, heavy lives. Hearing about other people’s struggles can just be too much for many. Vent on Facebook, to your other special needs parents and your therapist. That being said, sometimes people have to be informed of one thing or another. Attempt to keep it as short, simple and matter of fact as possible.
Finally, sometimes people are willing to help, but we don’t know how to ask. I know I was trapped in that for many years. It feels so awkward and uncomfortable to ask for help, especially if you’ve experienced others turning you down or exceedingly unhelpful “help”. But there is no way anyone can help at all if we don’t ask. Part of what held me back is that I always just needed a break from the kids and it seemed no one could ever do that for me. So I just stopped trying. But there are other things many people are willing to do, such as pick up a prescription, bring you a meal or help with some household task. It took my family being in a profound crisis before I really reached out, but looking at it now I can see that when I finally did get support, it buoyed my spirits immensely and made the world seem like much less of a dark place. Consider seeking help from a handful of trusted people or through your place of worship. People often want to help, but just don’t know how.
Tough times make following through on any of this advice even harder. The last thing you want to be doing when you’re overwhelmed is getting online and researching or making calls. Being your best self when working with people who seem clueless can feel like enough to throw us over the edge. But the alternative is worse. When we don’t have the information or documentation we need help can be delayed or never come. When we are not presenting well people can get the wrong ideas about us that become their own barriers. Self-care is crucial during this time to manage all the stress and heartache. Your kids need you to be strong and neglecting yourself can lead to so many other problems. Do your best to take even small steps to make yourself feel better and it will pay off in the end. Getting adequate supports in place can feel like a miracle. Hopefully with some of the advice presented here, you will be more likely to make that miracle happen.