special needs children Archives

As you know, our younger 2 children have Sensory Processing Disorder, but the picture in the middle might surprise you. Yes, that’s me. After almost 3 years of “maybe this,” “maybe that,” and a definite misdiagnosis everything has finally come together. I have Sensory Processing Disorder. Knowing what I know about it and all I’ve learned through being advocates for our kids it all makes sense – including the “maybes” and the misdiagnosis. I will elaborate.
I’ve always been “different,” and have problems with certain social situations – particularly physical interaction like hugging. I WILL hug people, but wow does it make me uncomfortable! I also feel easily overwhelmed in crowded places. Many times I refuse to go altogether if I know it will be crowded. I get upset stomachs when I’m in crowded places and often have panic attacks because I “feel like there is no air.” It’s really hard to explain! I just know it’s not “normal.” I have low self esteem, obsessive quirks, trouble focusing, a short fuse, etc. These are just a few examples to introduce you to my journey.
You know I have Fibromyalgia, which has a common bond with SPD in that the body processes signals incorrectly. So, it makes sense that my sensory integration isn’t quite normal either!
3 years ago I started seeking help for answers because I was having a hard time being the caregiver during my husband’s cancer treatment for him and all 3 kids (one of which was a newborn at the time). My obsessive behaviors got really intense, which is when possible diagnosis 1 came about: Obsessive Compulsive Disorder. I was told I “probably” have a mild case of OCD and the anti-depressants I take for my Fibro should help.
Diagnosis #2 was “possible” ADD. I am a wreck when it comes to focusing, and it started affecting our family more intensely during the rough times because I NEEDED to focus, and I couldn’t – unless I am obsessive about whatever it is. Then outside distractions make me want to scream. Seriously, I can’t describe my level of anxiety when I’m trying to focus on something, but something else is going on around me. Again, I was told I “probably” have mild ADD.
Then came Borderline Personality Disorder. You know what? I went with this. Sure, I don’t fit it to a “T,” but a lot of it described who I was in college. I was told that’s normal because you start to “fix yourself” at a certain point. After switching counselors due to a scheduling problem (a.k.a. He didn’t want to work in the mornings anymore. Maybe that should’ve been my clue he could be wrong!) my new counselor said there is no way I have Borderline Personality Disorder because you don’t just “fix yourself,” and if you’ve never gotten help you’d be in a bad spot – not in a better one.
Of course, during all of this I’ve researched the relationships between the Personality Disorders and SPD because there does seem to be one. Now I know what it is – an adult who has lived their whole life with SPD and didn’t know often exhibits symptoms similar to personality disorders, but that’s not what it is. I remember reading a child with SPD that doesn’t get help may later develop something like Borderline Personality, but that’s not it at all. It’s just that they’ve developed depression, low self esteem, etc. from being confused and misunderstood their whole life! Before I knew that, though, I remember BEGGING Joey to get Aurora help right away because “she is so much like I was as a child I don’t want her to be like me as an adult.” That was hard for me to type and makes me teary eyed, but it’s exactly what I was feeling. My feelings make sense, though, because I was right! If she didn’t get help she could develop some of the things that make things harder for me because we have the same disorder! I praise God I went with my instincts and got her help!
I’m not without hope, though, and I never have been – not for myself or our children. God is so good to us. Now that I have an answer I know how to better help myself as well! It’s a journey I can now share with my awesome sensory children, and as I learn about them I will also learn more about me.
This is an article I found interesting and helpful. It’s about holistic healing for Sensory Processing Disorder. She mentions a lot about the connections I mentioned as well. I think one of the reasons it’s so hard getting a diagnosis as an adult is many professionals actually believe you “outgrow it.” It obviously wouldn’t be a disorder if that was the case!
So, where am I on the SPD Spectrum? Well, I seem to be like Chaz in that I’m kind of everywhere! I have hypersensitivities like the background noise, wet spots on my clothes (I hate going out in the rain), disliking certain textures, hypersensitive to smells (and when I was pregnant that was SO much worse!), and I dislike touch. I have hyposensitivities in that I am always moving my feet (it drives my husband nuts), I’m always thinking a mile a minute, I often rub my face for the sensory input, I always have to have a fan on at night. There are more, but these are just a few things.
It all makes so much sense and is all coming together now. Isn’t it amazing when God teaches us something THROUGH our children? Isn’t it amazing that I am now able to spread this awareness – as are my doctors now that the clues have been put together. Not enough is known about SPD – particularly in adults, so it really is an opportunity to raise awareness.
I would like to start a campaign: the Faces of Sensory Processing Disorder where we put together an awareness by sharing our stories. If you or someone you love has SPD and you would like to participate please email me at emilee.roberts@peaofsweetness.com I’d like to include everyone – adults and children!
I’d also like to invite you to share your story in the comments below!

I think a lot of things are based on perspective, and I know this to be particularly true because I have heard totally different perspectives regarding myself as a wife and mother. I like to give people the benefit of the doubt and assume they truly don’t understand my medical issues or that they don’t understand the intensity of parenting 3 special needs children when you and your spouse both have medical issues. It can be downright overwhelming.
Although I feel hurt when someone says something negative in regards to who I am, I ultimately remind myself I’m a child of God, and HE chose me for this time and this place. He surely likes to choose ordinary people to take on extraordinary tasks – and it’s all for His Glory!
So, although I DON’T agree with the naysayers, I also don’t agree with the praises. You see, some people imply I am “supermom,” but I can assure you I am FAR from it! I am definitely not supermom. Yes, I do take on some daily challenges others don’t, and there are many others that take on daily challenges I don’t. I can assure you I wouldn’t make it through a day without God’s help. Many days I’m down on my knees just praying for some peace in my spirit so I can continue about my day calmly! Yes, I do have to overcome a lot to even do simple things sometimes – like playing on the floor with the kids!

Not Supermom

I want to let you in on a “typical” day for me:
The morning starts out with the kids being fairly agreeable. B and A both wake up fairly early – before 8am (I know that’s not early for some, but I’m not a morning person!) C, on the other hand, may sleep until after 11am because there is a high possibility he (and I) were up until after 2am because he couldn’t fall asleep yet again. To say I wake up tired would be an understatement. I’m absolutely exhausted in the mornings. I am so glad the kids are (usually) pretty agreeable in the morning because I am prone to being grouchy when I’m tired.

By lunch time, though, things start to go down hill. It doesn’t matter what day it is, whether we’re well into our homeschool day, or it’s not a homeschool day. It usually starts with Chaz having meltdowns. Sometimes they make sense, most of the time they don’t. All I can guess is he is under or overstimulated, but I’ve learned not to try to guess which it is because if I try to respond to his being understimulated when he’s actually overstimulated (and vice versa) I would be fueling the fire so to speak.
Instead I try to stay calm and encourage him to use his words (though he still has quite a speech delay) or point to something he wants or needs. The problem is, he sometimes is already too far into it that he no longer knows what he wants (or maybe he never did), and it’s like trying to find a solution for an unknown problem. I really do try my best, but regardless, it usually escalates to a point that there is really not much I can do. This is particularly bad when we’re doing homeschool because neither B or A can “focus” when there is something going on in the background, and Chaz’s yelling is pretty hard to ignore!
This is where phase 2 begins. Aurora gets overstimulated by Chaz. It doesn’t always have to be when we’re doing school. It can be any time. She then starts crying about everything, and once she is in her “zone” (as I call them) then every little thing bothers her. At that point I basically have to make sure nobody invades her bubble or she will get very upset with them. Of course, I intervene as much as I can, but once in a while she’ll hit her max and totally break down. Add a splash of “girl” to it, and you get slamming doors, too!
Phase 3? Not really. Brayden is almost always full of energy and is everywhere – meaning he’s in both C’s and A’s “don’t come near me” bubbles. So although there really isn’t a phase 3 because Brayden doesn’t have the meltdowns as often, he tends to antagonize Phase 1 and Phase 2. If he does so enough, then it might lead to a Phase 3 because one of the other 2 couldn’t take it anymore and B just doesn’t understand and gets really upset. He doesn’t tend to develop a “bubble” like the other 2, though. Instead, he tends to be the one in everybody else’s bubbles. Mind you by this point I’m starting to develop a bubble of my own and my patience wears very thin.
I inevitably hit burnout level.

As the day progresses everything waxes and wanes like this throughout until bed time. It’s at the end of Phase 2, though, where the day is the hardest – for myself included. By that point I am mentally and physically exhausted. There are many times I truly do feel like I “can’t do it.” Sometimes I wonder “Why does God think I can handle this much? I’m sure there are moms out there that have 3 kids like ours that knows how to keep their day from even escalating to Phase 2. Why can’t I?” I feel like anything but supermom. Sometimes I feel like a downright failure.
But you know what? We’re fine. We’re better than fine. We’re blessed. Yes, it’s hard – sometimes it’s really hard – like on the days where my Chronic Fatigue is just crushing me, and my Fibro flare-ups are body wide. I can barely stay awake, let alone fight the pain to just walk across the room. Sometimes I have a habit of blaming my health issues for being a “bad parent.” What I have to remember is – our kids are special. There is no sense in trying to compare my parenting to anybody else’s or our children to anybody else’s.
We’re ALL special and unique, and if that is how our days go, I just have to remember it’s an opportunity for me to learn. I learn more about myself, I learn more about parenting, and I learn more about what they are feeling or experiences. And I pray. A lot. And those moments when everybody is calm and fine, and the older two are asking me about God I realize it’s all worth it, and I’m exactly the parent I’m meant to be – neither “bad” nor “super.” Just me. In the grand scheme of things THAT is what matters.
I’m not sharing this to sound like I am “supermom,” because as I have clearly said, I don’t feel that way at all. I do what I have to do just to get through each day, and pray for God’s help along the way. I want you to know I’m utterly HUMAN. I know there are other moms out there, particularly moms of special needs kids that also feel that way, and I want you to know you’re not alone. You’re not a “supermom” maybe, but you’re the PERFECT mom for your kids. Just as God chose me for my family, He chose you for yours.