When the diagnosis comes, and your world changes...
I've been there too. Even though I had a sense of certainty that my son would have Autism, when he was born I allowed a little part of myself to hope that I was just overthinking things. Nagging little red flags that made me wonder continued to be dismissed. However, the feeling thoroughly twisting my insides never dissipated. Many google searches later, when my son was 13 months old, I called my mom.
She was always the one to convince me that every was fine. This time was different. There was a brief silence after I spoke out my deepest fear. That silence swiftly crushed my hope. "I think you are right. I was thinking the same thing on your last visit, your sister was too. We were going to talk to you on your next visit if you didn't say anything before then." The flood gates burst opened.
I spent the next two straight days crying my eyes out. Knowing my mom and sister could also plainly see it somehow made it more real. Immediately facing a fact that will change your family's lives in unknown ways is beyond overwhelming. Don't beat yourself up for these feelings. I am going to share with you the lessons I've learned over the last 9 years, hoping it makes your journey a bit easier.
10 Things to know as a new Special Needs Mom1) This is not your fault- We moms blame ourselves for everything. That has got to stop. Chances are that nothing you could have controlled will have been the deciding factor of your child's condition. Even if there was a rare case where there was something you could have controlled, you obviously didn't know. So, while it's easier said than done, you need to give it to God and let it go. I promise you that many years down the road you, more likely than not, will see the blessing this disability has brought you. Even with its fair share of sorrows.
2) Don't make yourself crazy trying to figure out the cause- This ties in with the point above. Did I spend too much time around chemicals? Was I not nurturing enough, was it arguments at home, or was I too stressed during pregnancy? Maybe it was his iron levels, or his awful pediatrician...genetics, epi-genetics, my own diet? You could go on forever and you will still never have a conclusive, for sure answer. You will spend countless hours on this trying to either punish yourself or "let yourself off the hook". Later you will realize that this wasn't your fault, and you could have used the time to cut out stress and take care of yourself. Leading me to the next point...
3) Take time for self care- I don't know if we run ourselves ragged because we truly believe it is the only choice, but I think there are lots of reasons. We worry about what others think. We think that we need to spend every moment on recovery. We see it as the price we pay for causing this (see #1). We think no one else will do what needs to get done in the house (and we may need to let go of some of those expectations btw). I burned the candle at both ends for years. I never even heard of self-care until about 5 years ago. I laughed at it like, "Who would ever have time to spend on relaxing? Do you even have a special needs kid?!" I paid for that big time. I ended up with leaky gut, gluten intolerance, and SIBO. Despite getting things mostly under control now, I am still allergic to all fruits and ... chocolate 😭. It wasn't worth it; I promise!
I'll write another post here on Self-care soon, so keep checking back (or just sign up for the newsletter at right).
4) Trust your gut, trust your gut, trust your gut- Our pediatrician was top rated at a top rated facility in an affluent area. I felt so fortunate to have him in our corner; until I realized how incompetent he was. He belittled me for giving my son 15 minutes a day of Baby Einstein while I showered, which made me furious. He never tested Kekito's iron levels (come to find out that is standard test to run), and recommended an iron free vitamin supplement for him despite knowing he was exclusively breastfed. Worst of all though, is that when I asked for the Early Intervention number, he told me to wait. He made me feel like I was over-reacting, and said, "Give it a year and see if you still feel that way." If you know anything about autism, you now that intervention is more effective the earlier its done. We don't all have an Autism diagnosis, but the idea applies regardless. My son has recovered so many skills and I am so glad I dumped the doc and called EI anyway. You know your child best.
5) It's okay to try new things- But don't make yourself crazy with experimental procedures or put yourself into the poor house. Unless something has some hard evidence, it's a gamble. I understand that there may be some miracle supplement out there, or something that worked for a mom on the internet... but it's still a gamble. To date, I haven't seen any Autism miracle supplement; only things that are good for gut health, so sure, why not on these. However, chasing expensive, unproven, drug and supplement therapies will probably have been money better spent on tools for other uses (occupational therapy, sensory input, child safety, and even self-care). If you don't have money for experimental therapies, don't beat yourself up -- most of us don't and it's not necessarily going to do any good.
6) Don't worry about what everyone else thinks- People will disagree with you. This is true even with typical kids. Keep trusting your own parenting instinct, praying about what you should do and how. You will never do everything right as far as everyone else is concerned. Take gluten free diets -- you will meet some people that think you aren't doing everything possible if you aren't trying it. But then you will meet other people that scoff and roll their eyes at you for trying. You are not parenting everyone else. You only answer to you and your immediate family. Don't let everyone's judgement stress you out; remember, stress is what we are trying to reduce.
7) Chances are it won't ever happen- It is crucial to stay (mostly) in the present as a special needs parent. Point 1 & 2 explain why living in the past isn't helpful. Living in the future allows you to worry about things that will never happen. If you are anything like me, it will be an ongoing effort to get better at living in the now. It's well worth the effort though! Those early days of nonstop crying included a lot of me imagining my son never saying, "I love you," wearing diapers forever, and living in a facility after I died. I know that will be/is the case for some people. My point is that you don't know what will be. My son was severely autistic, but he ended up being extremely high functioning. I experienced large amounts of stress over things that never will never happen to us. Prepare for the future, but don't dwell on what-ifs!
8) Find a mentor- Finding a mom who has "been there, done that" with your diagnosis is incredibly helpful. She won't be the ultimate authority on how you run your lives (see 6), but she may help you avoid a lot of pitfalls or help you make a more well-informed decision. If you can't find a mentor in person, try connecting in an online support group. At the very least, try to find someone in your same shoes or any mom friends! Having a friend who "gets it" is an indescribable blessing, but even "regular moms" get a lot of "it" too. Community is so much better than no community. Even for introverts like me and maybe you. You don't have to have play-dates every day, but you needs someone in your life for that days the proverbial yuck hits the fan. You need relationships with other moms.💙
10) Your child wants to be your beloved child- Not a burden or a project. If all you ever do is play with them and love them, that's okay! That's much better than only ever seeing them as a case to manage. Never ending therapies that overtake playing with mom time. Extra time in the kitchen over cuddles. Anger and resentment (enter self-care here!) taking over reading time. Love; I know you love your special needs child. You may even discover a deeper way to love others through having them. Don't let the life of multiple therapies, meltdowns, IEPs, and goals overtake their first and foremost position as your beloved gift from God.
11) Comparison is the thief of Joy- Okay, I couldn't stop at just 10, so here is the bonus one! 😉 While it's okay to compare notes just to see where your child needs extra help, don't let it turn into a cycle of comparisons! I mean this about typically developing kids and other special needs kids. Your child may be like some other special needs kids in some ways, but so different in other ways. That's okay! Worrying about it won't change anything for the better. Enjoy your child and know that having bad days is a thing that is going to happen. Some days you will hate the disability and what it has done to your life, but that is not a forever feeling. Don't feel guilty for feeling your feelings and don't compare your life to anyone else's. You only have your life to live.
Special Needs Veterans! Share your number one tip in the comments below!