I have done research on just about every neurological disorder out there in hopes to understand my middle daughter better. We currently have an ADHD combined type, SPD and an anxiety diagnosis. We are also now red flagged at school for dyslexia testing. I am not sold on any one of these diagnoses. Every disorder has a list of symptoms and each list has something in common with the next. It’s very confusing. What could be sensory overload could in fact be a sign of Autism. What was once labeled ADHD could very well be confused with dyslexia. Dyslexia can tend to hint to ADHD. Most kids that have one, also have the other. Or ASD is almost always misdiagnosed when it’s actually SPd. Then there is Anxiety which hints to be any one of these disorders! How can we differ all of these symptoms and possibilities?
I just decided to create my OWN symptom check list and add up how many of them fall into which category. Feel free to guide me.
Extreme sensitivity to Sound and light
Prefers being held or wrapped tight when upset
Academic delay in math and reading
Lack of some Social boundaries
Headache and tummy aches
Lack of understanding sarcasm/jokes
Gifted in creativity (art/gymnastics)
So I admit, I used to be one who didn’t believe in diagnosing children who were just “bad.” Because they must just have “bad” parents who can’t control them. I probably even used the phrase “when I have children I will never allow them to behave that way in public!” Trust me, I would have never dreamed I would be that Mom, with that child. Until it happened. I’d like to say the differences in her behavior started when our daughter turned 3. She become more strong willed and defiant than we remember our first being. I didn’t pay it too much concern because we had just had our third baby who took a lot of the attention, so we boiled it down to jealousy. But soon after the adjustment to the new baby settled into our new normal, she was still showing more and more signs of impulsive, hyperactive behaviors. When she turned 4 we decided to enroll her in pre-k two mornings a week. She loved it and made friends easily. But at each parent teacher conference we would hear the same things “she’s just a little busy and not where her friends are academically but don’t worry mom, she will get there.” Kindergarten wasn’t too much different from that either. It was mid year kinder her pediatrician recommended us to see an occupational therapist and a psychiatrist. No one would ever use the terms ADHD or dyslexia until we met with the psychiatrist. She was able to diagnose Brooke with ADHD within minutes of being in the office, but we completed several forms and evals to recieve this diagnosis. She also recommended the school do further testing for her academic delay. Here we are just moved to a brand new school this month and her new First grade teacher is ON IT! Finally I have a teacher seeing something that I’ve seen for years. ADHD is not an excuse or a cop-out for a child’s poor behavior. We work hard everyday (every hour really!) To find our control. When you have a true diagnosis from a professional, It is very real. It is an extreme game changer for all involved and it will affect your daily activities and emotional state. To the parent of a child suffering from ADHD, You will have good days of laughing and playing outside and you may even think to yourself “wow she/he is playing well with her sibling today.” You will have nights you cry yourself to sleep feeling like a complete failure. Some of these behaviors are so intense, I catch myself responding in the same unsurd way she is and then wonder why we are suddenly in a raging screaming match! We can’t both be out of control. But holy cow I just can’t fathom why her brain processeses the way it does. That’s when I have to really remind myself that SOME (and I say that carefully) of these outbursts cannot be controlled on her own. It’s the hard truth. ADHD is real you guy’s. No excuses are ever made for her poor choices in our home but my discipline method, approach and response HAS TO BE DIFFERENT than with any other child. Why is that so hard for me to remember in the moment? Because I’m human. My brain doesn’t process the same way hers does. My prayer this year as she’s struggling more and more in school and with peers, is that she and I together can find a way to control the daily struggles better. In order for me to do this successfully is accepting that ADHD is very real.
A few Months ago Kevin and I took a step of faith and joined a new home church closer to home. Today we led worship with them for the first time. This morning during our corporate prayer time before service began, both our Pastor and our worship Pastor encouraged us to dream again. As we closed our eyes and lifted our hands to receive what God had for us, I felt the weight of what felt like about a thousand pounds sitting on my chest. I couldn’t explain it. It wasn’t really nerves. It didn’t feel like my normal anxiety or fear creeping in either. It was the Holy Spirit. I think he was pressing on me to dream big. Somewhere deep within me I have dreams and visions that I’ve tucked away for either the sake of my kids or my own insecurities or lack of enough skill or confidence. Our worship pastor spoke over me before worship began and said I was going to have breakthrough in my worship today. I led out for the first time in a long time, on an unfamiliar and somewhat challenging song that I didn’t know I was leading until this morning and honestly I don’t feel like it was all that great technique wise and especially towards the end. Yet all of that aside, I felt such freedom and genuine happiness when worshiping. Jesus doesn’t pay much attention to the details I tend to play out In my own head. Jesus sees my heart for him and that dream in me. He will send shepherds to guide and train me in the skills I lack. But One thing I know for sure today is that worship can no longer be on my back burner, no matter how or when I grow in it, it can’t be my hidden dream anymore. The pressing on me was just too much to deny.
Wow. That’s the only word I have. When The Lord called us out to our new home church Declaration in August this year, we never dreamed he had intended to move our family to a new home and for our girls to attend the very same school our church gathers and prays each week. The list goes on at how many God moments we’ve seen these last few months. He’s given me visions. He’s spoken to my children in dreams and through church lessons. He’s provided me a job that I’ve prayed for for years, that just so happens to cover our new rent to the penny, the very week we were told our current house was being listed to sell. You can’t deny he’s guided us here and planned all of this. We were fearful to step out to a new church months ago. We were worried when we were told our current home was being listed, we are anxious and sad for Our girls to be uprooted mid year. But how can we feel that way still, when we have seen all he has done? I am not afraid, I am not worried, sad or anxious. I am excited! And I am fully anticipating great things!!
I can’t tell you how many countless hours I’ve been pondering this thought of “What if I’m doing it all wrong?” There are so many eggs in one basket piling up all at once this week regarding Jenna medically, that my brain jumped in the “Yay! Maybe we’ll finally find an answer!” mode, again. It’s hard not to label her. I Try not to take captive one out of 12 Doctors diagnostic opinions. I know I analyze her body movements and symptoms but I don’t intend to create more issues. What if she is fine and her tests were wrong? I truly don’t know if I’m failing her and doing her a disservice here or if I’m advocating on her behalf and doing what any dedicated mom would do. There is absolutely no worse feeling. It’s heartbreaking, lonely and exhausting. What if I’m doing it all wrong? I can’t stop wondering this. But I AM a dedicated mom who wants answers for her child’s future. She was diagnosed with a real life threatening issue at a time. So what if I’m supposed to be her advocate and get her all the therapy she can get? What if I AM doing it all right?
I have to ask myself 3 Questions:
1. Am I holding her back?
2. Will these medical decision help her in the long run?
3. Is she happy?
(If you know her at all, you know the answer in a minute is yes! She carries so much joy with her.)
I am 100% convinced that the #1 stress in a special needs families daily life is not the disability itself, but the financial struggle that tags along with it.
My youngest daughter receives SSI (supplemental security income) for several medical issues that includes a g-tube. SSI is strictly income based, NOT just medical disability based. Meaning, you may have a child who is wheelchair bound but you can earn too much money from your or your spouses job to recieve any services. SSI includes full medical coverage, it covers all of my daughters feeding supplies and they deposit money directly into my bank account every month for any of her extra needs. The stickler is you must send in check stubs each month. They keep track of every cent earned. The more income my husband may receive on any given month, the less Income SSI will deposit into our account.
SO HERE IS THE DILEMMA!
If I work a full time job, we make too much money for ANY services. If I work outside of the home, a nurse cares for my child’s special needs and I pay a nanny or daycare to keep my older girls after school. Which leaves me back to square one. Broke.
Now, let’s Say I don’t work. We will remain tight financially and Living on one income is a challenge for a family of 5. You would be surprised however how much you adapt and learn to live small. I would love to continue to be able to have the honor and flexibility of being my child’s full time advocate. Does that make me selfish?
So Here’s where I’m at.
I want to be my child’s full time advocate but I need to earn SOME income. I have been praying for months for God to bring me more consistant opportunities to do both. Today, he answered this for me. I am so relieved and excited to feel like I’m free to do what I’m really called to do in this season, which is to be with my children. But to now also contribute finically and help take a small load off my husbands shoulders.
The financial struggle for the disabled is real.
If you know me well, you know that patience is not my parenting strength, like at all! With two out of three of my children being special needs, my awesomeness is pretty much maxed out around noon each given day. A few days ago my younger two wanted to “help” by doing the dishes. Only, no one asked mommy if they could help, they just “surprised” me. And by surprise, yes I mean they flooded my kitchen counters, floors and themselves. Normally I would have lost my mind. Any new mess or chaos that isn’t within the normal crazy over here makes me completely anxious. But this time, I snapped a photo of them, instead of snapping at them and decided to try all that was within me to use this as a teaching moment. Tonight I found a little extra time after dinner to show the little’s how to properly clean the kitchen. And to my surprise, it was so much fun!! We were singing and laughing, twirling and even getting a little wet on purpose. My kids learned a lesson while having a different kind of fun with mommy. Oh and my kitchen is clean. Maybe not by my typical standards of “clean” but cleaner than it was, none the less. I wish I could say I utilize each daily opportunity to train them, but I don’t. I’m human. I’m constantly asking the Lord to show me how to better respond so they can become all he has called them to be. It’s funny how a flooded kitchen can bring the absolute crazy mom out of me or the patient teacher. It was all about my choice of response in that moment. I hope to keep remembering that this outcome is so much more calming and fun for us all. Who knew? 😉
Last night I placed this leftover birthday cake of my husbands on the bottom shelf of the refrigerator. Only, it didn’t look quite like this the last time I laid eyes on it. After much begging from the three little’s, I promised the kids a piece of the left over Cake after lunch today. Upon opening the fridge, much to my surprise, this was what I saw. Mystery finger prints covering the top layer of icing. Only lets be real. There was no “real” mystery behind these finger prints. Truly, I knew the culprit without a doubt was my 3 year old daughter, Jenna Reese. I snapped a quick photo to share a laugh with my husband, who was at work. It was then, after getting a second look at this messy cake, that I had a whole new realization about these finger prints. How often do we ask God for something and he asks us to wait? Well for me, it feels like I’m constantly waiting on him and his promises and plans to pan out for me. I’m sure to him, I’m like an impatient child, waiting for my cake. I look at this cake now and see my own finger prints. I see Me, making a mess of his good and perfect plan, trying different or faster routes, because I just can’t seem to wait or trust him. If only my Jenna had just waited for my promise, her slice would have been so much prettier, more icing and much more satisfying to her. How do we wait patiently and really trust that his promise is true? Well for me, I think like a mom. I am a mom of Three, after all. When I promise my child something and they wait like they have been told to do, they get what they were promised. It’s not always when they want it or think they desperately need it, but when I feel they are ready. May we all wait patiently for our promised cake and may it be delicious when it’s our turn to eat!
“I waited patiently for the Lord; he inclined to me and heard my cry.”
Psalms 40:1 ESV
Well my goodness. I surely had no idea my latest blog post would be so well received and by so many different types of people. I have a few new followers, It’s been shared on Fb by several friends, I have gotten friend requests, private messages and text messages thanking me for being so raw and real. Wow am I ever so relieved to find out that I’m “normal!” I’m not alone and people care. Thank y’all so much. I will continue to blog and maybe one day I’ll have my own little special needs mom book! You never know! 💛
I’ve always wanted to be a mom. I was 7 when I started drawing pictures of my little family with multiple children. My first job was in a daycare. After loving that job, I chose to always stick with childcare. I also nannied or worked with autistic children as an ABA therapist. Those jobs were hands on with some intense behaviors and many skills were taught to me to carry into mommy hood. But nothing could have prepared me for what my picture of motherhood would look like. Bringing these little lives home and raising them into amazing people who love the Lord and who care about people is no easy task. I have three amazing little girls, who make me so proud. My oldest daughter (8) is very gifted and steady. She is a typical eldest, head strong smartalic at times, she’s creative and my calm. My middle daughter (6) has a huge heart for people and tries hard at all she does. She also struggles with ADHD, SPD and anxiety. My youngest daughter (3) is hilarious, energetic and so tender but also has SPD, hypotonia, Muscle damage in her throat and aspirates liquids. She receives her liquids through a g-tube (a feeding tube in her stomach.) My heart is full. But what I hear most is how full my hands are. And let’s be real. They are! Some days are so fun, rewarding, peaceful and even blissful. (When we are vacationing in south padre getting everything we want, that is!) But most days, lately, have been extremely intense with impulsive behaviors that lead to ear piercing screaming, kicking, hitting, spitting, door slamming, and 20 minute meltdowns. There are moments I literally scream out loud for God to hear me, see me or help me! I have found myself questioning God on why he intrusted me with two special needs children with these extra needs from me, like inserting g-tubes and priming feeding pumps and with intense behaviors. They both require my eyes and hands 100% of the time. I have cried myself to sleep almost every night this summer, in pure agony and guilt over feeling cheated in some way. What “good” mother feels that way? It’s horrible to admit that. Most of the time I don’t even mean what I say but I often snap back at my middle girl with ugly words and can actually picture myself becoming rough or “too” angry with her for Discipline. What “normal” mom feels this way? NOTHING works. Sometimes I forget she suffers with real mental issues that she may not really be able to control. In my defense, she looks typical enough to possibly be “pulling my leg” here and faking this. Or maybe I caused this by drinking too much caffeine while pregnant or not paying her enough attention during my traumatic pregnancy with my youngest. Trust me. I’ve begged God to show me how On earth I can do this. I will he hooking up a feeding for my youngest while the bathroom is being flooded upstairs by my middle. I will tend to the bathroom flood and the laundry will be pulled out and thrown out of each previously folded ever so neatly bedroom dresser drawer. I often tuck them in with a disaster of a room because I just can’t possibly clean it again. What’s the point? I can cry all over my husband on his lunch break and when he gets home from work but he’s not here enough to understand the full picture of just how bad this is. Nothing hurts worse than feeling alone in your own home. Being a Stay at home Mom can be lonely in itself but adding in two special needs Little’s is like “holy crap batman! I will surely die!” When will it get easier and when will I miss the days of flooded toilets and markers on the wall? Well I suppose I won’t know until I’m there. I cry a lot and I plead with the Lord to forgive me for my lacking and to show me how to teach my little, reach my middle and nurture my big. At some point we have to seek help. This summer, I did just that. My middle and I see a mental health counselor weekly and are eager to learn how better to communicate to one another. I urge you moms of little’s who have intense behaviors or needs that pull at all of your energy, seek counsel. It can be so healing and it in no way makes you weak or a failure. It shows that you care ENOUGH to admit you can’t do this alone.