As a Clinical Social Worker working with kids and families I spend a lot of my time with other people. What happens in my office can be a mystery to some. People may think I sit and listen for most of the day, which is largely true. Some people may think I play all day, which is also very often true. I love doing that. I love what I do for a living. If I were given a choice I would pick the same profession all over again. However, aside from listening and playing a whole lot I serve in other roles as well. As a clinician on an interdisciplinary team of professionals assessing, diagnosing and treating children with developmental disabilities I also serve in the roles of informant and teacher along with cheerleader, grief holder, support system and voice of reason. The days I serve in the role of informing a parent that their child has been diagnosed with a lifelong developmental and/or learning disability are usually the toughest. These days are difficult no matter how long a clinician may be doing this job. I’m 15 years in and some days still rock me to my core. These moments and appointments are the ones I take home with me. They are the ones I think about as the years pass. For everyone in the room it is a hard day, but for the parent receiving this information there is so much happening. Those appointments may confirm months of worry. They may leave a parent feeling validated in the fact that they knew deep down something wasn’t going as it should. Those appointments may, in the moment, feel devastating. They can at times be a relief that the ‘worst case scenario’ a parent had envisioned is not happening. Each family is different and each child is different.
The moment of receiving an initial diagnosis can be jarring, especially when a parent may not see that diagnosis coming. Hearing words like Autism, Intellectual Disability, Attention Deficits, Language Disorder, Learning Disability, Borderline IQ can be scary. It may feel like within the blink of an eye your whole world has changed. In some ways it has, but in other ways your life is exactly as it was before hearing those words. There are days when all I want to do is gather up all the information I have in my head and give it to a parent in that appointment. But that is just impossible, and truth be told wouldn’t be at all helpful for that moment in time. There are, however, a few things that are valuable to know and remind yourself of as you head down, or continue down, this unique road of being a parent to a special needs child.
1. Your child is not their diagnosis: No matter what label or diagnosis your child has, they are the same child you loved before you ever heard any of the ‘scary’ words listed above. They will continue to be that child – in good times and tough times – and you will love them through all of it. A label, a diagnosis, can be a means to an end. It can help access services. It can lend to treatment choices and approaches, but it is not the sum total of who your child is. It is a part of who they are, but it need not define them or you.
2. There will be a lot to learn – you don’t need to do it all at once: Whether you’ve just gotten a diagnosis or you’re four years in and trying to get a private school placement or more IEP services, things will often come at you with the feeling of intense immediacy. Nine out of ten times that is just a feeling. Most things are not immediate and being able to remind yourself of that allows you greater ability to process information, learn better and prioritize. It may feel like you have to figure out school placement, therapy schedules, doctor appointments, medications, etc. all at once – but you don’t. Stop. Breathe. Keep moving forward.
3. There will be grief, but there will be immense joy: When a child is born all parents have expectations and hopes – whether we consciously think about them or not. This is being human. To find out that your child may not be able to reach the initial hopes and dreams you have for them or for yourself and family is hard to accept. There is a grieving process that is natural and necessary. It may come all at once. It may trickle in and out over time or during different milestones of life. It is ok to feel that grief. Respect that feeling and know that along the way you will also be overcome with deep, inexplicable joy at the things your child will do, and at what you accomplish as their parent. Every child, no matter the diagnosis (or lack of one), has gifts and strengths. Remind yourself to stay focused on your child’s abilities, because comparing to others can blind you at times to seeing the joy right in front of you. It is natural to compare – we all do it, but in those moments gather your strength and refocus on your own child and your own home. There is greatness there. There is calm and love and power right in front of you.
4. You are NOT alone: Parenting in general can at times be a lonely, lonely road. Parenting a child with special needs can feel even more isolating. That said the reality is that there are many, many parents who are looking for you just as you are looking for them. Find your tribe. Don’t be afraid to start talking to a parent sitting next to you in a waiting room at the Developmental Pediatrician’s office or at Speech Therapy. Talk to your child’s school about starting a monthly parent support group for parents of kids with IEPs. You need people in your life that can get it.
5. You. Are. Enough: There will very likely be days when you start to doubt yourself and your ability to parent this very special child. When you wonder how you’ll get through the next IEP meeting or the next month of ABA or the next day of feeding tubes. Days when you may be ready to rip your ears off from the repeated self-stimming yelps or flapping; days you wonder if your voice will stay strong when you tell your child with ADHD for the hundredth time to get dressed for school. There may be a night when you cry yourself to sleep after your child physically attacked her brother and you thought for just a moment you wouldn’t have the physical (or mental) strength to stop her. These days happen. They may happen to you. They may happen to your best friend. They are real life and hard to deal with. There will be times and situations that are hard to parent through and find your way through. It would be a feat of wonder to not feel sad or weak or scared at times; but also know that although it may feel like these times may never end, they will. You are enough. Your child will be okay because you are their parent. You are enough. There is no such thing as “best” or “perfect.” Those are fiction. You are enough. Your love and perseverance and refusal to give up is enough. Your family will have some rough days (maybe even weeks or months), but you will also have amazing days (and weeks and months). Be kind to yourself. Forgive yourself for doubting your own strength and tenacity. Ask for help when you need it and know that in doing so you prove just how amazing a parent you are.
The truth is this is a short list, but what is also true is that parenting is hard no matter what your child is like or needs. In a lot of ways parenting is the hardest thing most of us will ever do. It tests you and your relationships and your beliefs. But it also teaches you and gives you purpose and can focus you. If your child has special needs know that you can and will manage all that life throws at you and your child. You will find your way and when you’re lost there are so many people around you ready to give you a map, a hand and a hug (you decide what you need and in what order).
If you are looking for someone to talk with to get support call me today or join me and others at my monthly Special Needs Parent Support Group.
