• Andrea Jones

To The Friends Of The Special Needs Parent

I've been a little MIA lately. It has been a super busy end of the year for my husband with his schooling, my 2 kiddos end of the year activities, and starting a group coaching program.

I've been mulling some things over for a while and trying to put the words together for this post that is near and dear to my heart.

Never did I ever think I would be the parent of a child who needed a little more than the usual... otherwise known as a special needs mom.

I know when I hear that term, I might think of a child who is developmentally disabled or handicapped, but special needs means just that- needs that go above and beyond that of a neurotypical child.

If you're new here, our oldest child was diagnosed with PANDAS almost a year ago, after several years of trying to get an accurate diagnosis for the subset of issues she was experiencing. You can read more about that here.

I did not realize how confined our lives had be come due to the limitations of our oldest child until I had our second child who did not have those limitations.

Prior to finding out that our oldest daughter had PANDAS, we really didn't understand why she was having meltdowns so unpredictably. Why her behavior would get out of control when she came down with an illness. Why she couldn't stay up past her bedtime without major ramifications. We just knew that it was no longer in the spectrum of "normal" childhood behavior. This wasn't autism, as she would have periods of time where she didn't struggle with these things AT ALL.

Our lives became really small in order to avoid the meltdowns and the looks that would come along with them. Always having to be home by 6pm in order to get her in bed by 7 made it difficult to attend gatherings with friends and family. Not to mention people not understanding her behavior and the judgements that would sometimes come at us "well, have you considered spanking her?" "you guys don't set enough limits" or my favorite "Are you SURE she's allergic to (insert any one of her food allergies here) or did you just make that up?". Yes that's a real statement- and I'd like to know who in their right mind would make something like this up? If they understood how utterly inconvenient and expensive it is to eliminate these food allergens, I can guarantee that they would not think that we made it up.

These encounters, on top of our daughters limitations, made us want to avoid them altogether. But in that self protection and wanting to protect her, we began to feel very isolated. It became easier to just tell people "oh we are good!" instead of explaining what we were really experiencing, letting them know how we were really doing and that we needed help.

I avoid telling people WHY we can't do certain things because I want to avoid their discomfort and the potential for judgement. Not everyone can handle the info and not everyone is willing to understand and that's totally okay with me. But there are some days where I just cannot put forth the emotional energy on the off chance that they just might not get it. And in that- I have not given those who CAN be there an opportunity to do so.

As our daughter has healed and some of the pressure has lessened, I am finding how utterly necessary it is for me to take the risk and ask for help. Have the hard conversations. Endure the rejection if needed and create a support network.

While I take FULL responsibility for reaching out and bringing people into our world, I wanted to write this for the friends and family of the parents in order to give some perspective and help navigate what might feel uncertain or even risky. I know what it is like to be friends with parents of special needs children and how helpless it can feel- unable to offer any real solutions. But now being on the other side of this, I want to assure you that your efforts are seen, valued and so needed, while also giving some insight into how to be there for us.

1. Listen to understand. Often, we are trying to make sense of the diagnosis, behaviors, instabilities, demands of doctor visits, supplementation, and dietary restrictions. It is A LOT. I know for myself, I hold back if I feel like I might overwhelm a person with info. It's okay to ask questions and it's okay even if it makes no sense. Your listening and being present means more than you know.

2. Ask them to tell you more about the child, their strengths, their passions AND their limitations. This tells us that you are safe and are not going to judge the child for their behaviors. We need to know that you see the child (or are trying to) with eyes of love and total acceptance. This helps when we need to be reminded of the beauty of our child when we have bad days. This also shows the child that they have more than their parents and doctors on their side- they have a community that is working to understand and support them.

3. Ask how you can help practically, and when we say "oh I'm fine!" ask again- because more than likely we aren't entirely fine and we just really don't want to inconvenience people with our burden. Sometimes we don't know what we need, so it's always okay to throw out options "Can I watch your kids for you for a few hours? Can I make you dinner? Do you need help with laundry?" Sometimes we just need someone else to think for us when we can't problem solve on our own.

4. Don't forget that we want to help you, too! asking us to watch your kids, bring you dinner or go out for a girls night is NOT a burden- it helps us to feel helpful.

5. Offer your empathy and understanding. Often, parents of special needs kids have to parent a little unconventionally. We have read nearly every book on the market and have found FEW that speak to the special circumstances and behaviors we are faced with. We have taken a deep dive into the unknown and have already blamed ourselves a thousand times over for their behavior. Having a listening and supportive presence makes ALL the difference.

6. Remind us to have fun! This is essential. The brain was not wired to be in crisis all the time, and with the endless needs, we often can forget to make room for fun. Drag us out of the house if you have to.Kidnap us and make us watch a comedy. It will do wonders for our hearts.

7. Don't be afraid to tell us the good that's going on in your life, and the bad. Even if your bad days feel insignificant in comparison to ours, we still want to be there for you. It helps us to feel less like the "one with all the problems" when we can help share your load too. We also want to be there to celebrate the good that you are experiencing!

8. Just because you don't "see" my child's limitations, doesn't mean they aren't there. Many kids who struggle are actually VERY good at "holding it together" until they get home where they feel safe enough to process. In a recent poll I did, nearly EVERY single special needs parent reported this phenomenon. This can be exceptionally frustrating because we almost feel crazy that our kid can hold it together at school and then lose it as soon as they get home. Practice validating and refer back to number 1. There is nothing worse than feeling like you have to prove your need for help, or prove that your child is struggling.

9. My child's behavior is NOT who she is. Her behavior is a symptom of the disease process, NOT her identity. She is not "just a brat" or "defiant". These are symptoms of a problem- not the problem itself.

10. Remind us that its not our fault. I know this one sounds a little odd, but out of almost 200 responses from special needs parents, nearly every single parent reported being treated as if their child's behavior was their (the parents) fault. This goes back to old psychological theories that really haven't died yet. It is HIGHLY damaging not only to the child but to the parent because it erodes our own self trust, diminishes the work that we are doing, and ultimately solves no problems for anyone. On top of that, myself as well as many of those who responded report feeling guilty for not recognizing a problem sooner, not knowing how to parent unconventionally in the midst of such tremendous need, not listening to their gut when they felt there was a problem in the first place. Remind us on bad days that our best is good enough- even if it doesn't "fix" our child or the problem in the short term.

11. Offer financial support. This last one has me swallowing more than a mouthful of pride. I find my fingers freezing up as I type, but I'm going to do it anyway. I like to think I'm entirely capable of supporting myself, but the truth is, the financial burden of raising a special needs kid is HEAVY, especially given that many of the treatments they need are not covered by insurance. Add to that, that often one parent is not able to work, or has to significantly cut back their work hours and thus the pay they desperately need in order to be the primary caregiver for the child. So many of the special needs families I know (ourselves included) have given up vacations, dipped in to their investment or vacation funds, gone into considerable debt, or had to use sick pay in order to cover the treatments they need. Even if all you can do is $1- that $1 helps!!

*That being said- if you would like to support our personal journey in healing our daughter, you may do so by donating via our PayPal account: motherofadarling@gmail.com. ALL donations will go towards our child's therapy and un covered labs and medical expenses. If you are not able to give financially, your prayers, emotional support and friendship are MORE than enough and so deeply appreciated!

I will end with one final note: THANK YOU. Thank you for taking the time to read this post. To those friends and family members that have already been doing some or all of these things, I cannot thank you enough! I hope that it gives you insight and understanding, while also conveying how valuable you are as a member of our supportive community!

To your wellness,

Andrea Jones