(This is a bit of a longer post; I considered splitting it into 2 or more posts but felt in the end it needed to stay together given the topic. We are humbled by all the prayers offered on our behalf)
Our son Caleb is a happy, spunky 4 year old. He loves yogurt and cheese sticks, monster trucks and LEGOs, his family and friends. He’s always willing to be a big helper, and he has such a giving heart that thinks of others. He loves his preschool and attending church. He has a bunny lovey called Big Blue Baba that Grandma made him, and he adores his cat Gizmo.
He also, in the next few days, is going through testing to confirm our suspicions of Autism.
I’m sure right now there are 2 things running through your head. First, “oh wow, I’m so sorry, that’s terrible”. Second, “and there’s another one with the label; is Autism really a true diagnosis at this point in society or is just part of human nature? I mean geez, how many kids can be diagnosed with it?!” And there’s probably a third as well, if your child is a typical child, “I feel bad for thinking this, but I’m glad it’s not my kid.”
But God prepares us for what He knows is coming. And we know all His ways work together in the end for the good that comes in Christ.
Commit to the Lord whatever you do, and he will establish your plans. The Lord works out everything to its proper end- even the wicked for a day of disaster.
And we know that for those who love God all things work together for good, for those who are called according to his purpose.
While it’s frustrating and tiring that Caleb is on the spectrum, we almost anticipated it. Why? Because I’m on the spectrum. I wasn’t diagnosed until about a year ago, but it’s been there all my life. I’m high functioning, but without resources when I was younger, I definitely developed quirks and habits to help me cope; some I still use today. Looking back, the things that even my own family teased and tormented me about were very obviously signs of more than just someone who was an oddball. But, well, my family would rather not have a diagnosis in order to have that oddball to pick on and make fun of, since you can’t/shouldn’t make fun of a diagnosis. So I adapted (with help, support, and encouragement from friends). Still, having the official diagnosis helps me cope mentally with those quirks (though it also upsets me, because I know it’s there and my mother didn’t care enough to really take a deeper look).
So when Caleb started showing signs about 6-8 months ago, we watched it closely. We started implementing little things that help support autistic people around the house. This is where the Lord prepared us.
Before I got sick, I was a student at the University of Delaware. After switching my major 5 billion times because I couldn’t decide what I wanted to do in life (well, I could- be a wife and mother- but that wasn’t acceptable to my mother and family, so I had to find a major and prepare for a career), I ended up a Women’s Studies major with a Disabilities Studies minor. I know, right? I ended up deciding I wanted to work with kids with cognitive disabilities after applying for an Applied Behavior Analysis or ABA home therapy assistant position with a local family l through my Disabilities Studies minor; I fell in love with that population, and I had a knack for working with them. I participated in the DFRC Blue-Gold Football Game as an Ambassador my junior and senior years in high school, and with their Hand in Hand Program my senior year; I had a buddy who was cognitively disabled and loved working with her. The Meadowood Program (the special education program in Red Clay School District in Delaware) had their classrooms at my high school and I spent time with them, and always had a blast. I had a patience with them that I didn’t have with typical kids; these kids may need correction but almost all the time when they are acting out, they don’t know any better and were not pushing my buttons purposefully. For some reason, that knowledge gave me the patience that even I didn’t know I had. When I finally settled on what I wanted to do though, special education, it was too late to switch my major to Special Education. Luckily the majority of my courses cross-listed with SpEd. Because of that, after working one summer as a substitute paraprofessional at The Brennen School (part of Delaware Autism Program), they offered me a job once I graduated and would send me back to get my Masters in Education (Autism). Unfortunately, Life and RSD intervened, and I ended up having to leave school that next semester. But the skills and knowledge I gained while working as a therapy assistant and as a para in the classroom would prove invaluable many years later when Caleb started having behaviors.
God directs our steps, most definitely.
Caleb was actually in Delaware’s Child Development Watch, which provides in home/daycare support for children under 3 for free through the state. Caleb was enrolled to receive Early Childhood Education (ECE) therapy; they also have OT, PT, and Speech therapy. ECE is a little of everything; think wide but shallow. He was in it from 1.5-2.5 years and then discharged. If I had felt it needed at the time, I could have continued with therapies through Child Find, which takes over at age 3 in those areas where the child needs support. Caleb didn’t have a major specific delay, just a mild across-the-board delay, and we felt that by the time he was discharged, he was caught up thanks to therapy and ear tubes placement. Looking back now, there were definitely little signs. Hindsight’s always 20/20.
He started to really show signs about 6-8 months ago. That’s when the auditory sensory issues started. Lord help us if we flushed the toilet without telling him first so he could cover his ears. Thank goodness I had a travel potty because for a time, he wouldn’t use public restrooms because of the hand dryers (that’s a bit better now; I still have to cover his ears and he still refuses to use them but he at least will use the bathroom). He would quiver in our arms during thunderstorms while covering his ears.
Then the screaming started. That high pitched, ear piercing scream that every Autism parent knows. The one they do if they are frustrated or upset, that they use instead of their words to tell you what’s going on. I’ll be honest- for a child who hates loud noises, I’m not sure how he can stand his own scream!
At his 4th birthday checkup, I mentioned to the Physician’s Assistant about these things as well as I’d noticed he was still doing toe walking despite having worked on it in Child Watch therapy and using flat bottom shoes like Converses the ECE therapist had recommended. She gave us a script for OT. But then I started to really hone in on those other “quirks”.
Things like the clinginess when he’s dropped off at school. He’s been attending daycare since 18 months, and his current preschool for over 2 years. And every morning, you can expect tears, tantrums, and teachers having to coax him away with something so Brian and I can hurry out the door without him seeing. Every day.
Things like his sleeping. As a baby, he slept wonderfully. He never climbed out of his crib, even when we took the side off. We had to wake him up for feeds as an infant. But ever since summer 2016, bedtime and sleep have been a never ending, dog tired fight. He won’t go to sleep in his bed without someone staying with him until he falls asleep. And he’s up every night at least twice, crying for us. its only gotten worse as time has passed. We have tried every aid we can think of- sound machines, dark and monster spray, EOs, loveys to protect him, a soft desk lamp, a night light, a special light from IKEA (not a full light, but not a night night) mounted next to his bed that he can control, special flashlights, switching from the toddler bed to a twin bed and letting him pick his bedding, an OK to Wake clock, prizes if he stays in there the whole night, and more. We even were given one of those Privacy Pop bed tents to try to see if it will make difference. The past few weeks here have been the worst. He was up SEVEN times the other night. It didn’t occurred to me that this might be Autism related until he started doing other things.
He does not have OCD type tendencies about things like lining up toys, but if he is playing with something, and has it exactly his way, you better pray for mercy if you mess up anything he had a certain way. He’s also much neater than normal peers, always tidying up and never saying no when you ask for help cleaning up. At school he cleans up other kids stuff. While he’s popular at school (not sure how that happened since neither Brian nor I were popular), he definitely is introverted and a loner. He’s much happier sitting on the floor of the kitchen reading a book while his teacher makes lunch then playing with others; he loves to play with individual toys like Magnadoodle instead of joining the other kids. By the time 3:30/4P hits, he is overwhelmed and just wants one of us to come get him (this is when he will often sit with the teacher and do individual type toys). More than likely, he will have melt downs at home purely because he’s been holding himself together all day, and just can’t anymore.
At home, we noticed several other things. There is definitely a touch sensory something going on- he has issues with the toe in his socks, brief type underwear, certain shoes and clothes; when he’s watching tv or doing something where he’s seated, he almost always is rocking or bouncing his body or pushing against something for the pressure. He also does the hand flapping when overstimulated, angry or excited. On days he is home and it’s raining, the little trampoline he got for Christmas is the biggest blessing to help him have something to do and a way to calm him down. He’s definitely experiencing some anxiety (which could be separate from the autism); he has a lot of unfounded fears, like of us leaving him at school for the night or fears of storms (he pulled up the weather map tonight and tried to tell us a storm was coming- he pointed to the radar map of Canada). He’s a kid who loves his routine and when it’s thrown off- he’s home sick, or we are on vacation, or it’s a holiday- he gets extremely overwhelmed because of not knowing what comes next, and will repeatedly ask what is coming next. He’s definitely behind a bit in speech still; he uses phrases like “last later” for “yesterday”, and “what’s that loud” for “what was that sound”. And there are even days where I have to ask him to repeat himself because I don’t understand. If he’s frustrated, upset, or angry and can’t verbalize it, he will do that high pitched scream that every Autism parent knows. He doesn’t respect personal space for non-family members and it takes frequent reminders to get him to notice. There are others, for sure, but these are the more prominent ones.
Now, let me say something. A couple things, in fact. First, I adore my child and I don’t care if he graduates with a full ride to medical school or an attendance certificate and is a bagger at the grocery store. I don’t care if he wants to play sports or do science Olympiad. I don’t care if he has to live in a group home or if he marries and has a family. As long as my child is happy, THAT. IS. ALL. THAT. MATTERS. God gave me this precious being to nurture and love, unconditionally. No conditions. No asterisks. No ifs, ands, or buts. I will still be the proud momma no matter what; I will still cry on his birthday and cuddle him no matter his age. I will do as God has called me to do, because my child deserves no less. Second, those who know me know that when I’m invested in something, I do not stop. Ever. Whether it’s advocating for RSD at the Delaware Legislature, or spreading awareness about babywearing, or educating people on my choice to wear a headcovering, I’m passionate (to a fault at times). Well, there’s nothing I’m more passionate about than my own child. I grew him underneath my heart; I was the first to say his name to him; I fought to be by his side in the NICU; there’s so many examples. This is no different. Well, maybe it is. Because it will be the biggest fight I ever do, advocating for my neurodiverse child. I will NEVER stop fighting to get my child the services and things he is entitled to by law, and beyond that.
I know I’m entering a world that’s very complicated, where there’s lots of grey areas, out of pocket costs, and sleepless nights. Where flexibility becomes the learned goal, and every little achievement that seems small to others is huge to us. Where teachers and paras and therapists are exhausted but devoted. Where politics unfortunately is a game you have to play sometimes in order to protect your child. Where bullies and monsters loom larger than life, but the innocence and goodness that is the essence of your child chases the darkness away and fills your reservoir with hope and light.
The next step is to have an evaluation done by the school district, called an Autism Diagnostic Observation Schedule or ADOS, a type of standardized evaluation, Wednesday. Then there will be an eligibility meeting to determine if he can attend the preschool, and an Individualized Education Program or IEP will be made (the preschool equivalent is called an Individualized Family Service Plan or IFSP). Once we have the report back, we can get the ball rolling on other things like Medicaid (Delaware has a program for children who are disabled), Respite funding, involvement in activities, therapy, and so forth. Hopefully we can get the Medicaid purely because if we have to do therapies out of pocket, I’m not sure we can afford it since our health insurance is, well, crappy.
I’m lucky. I have an amazing lady from Autism Delaware named Heidi Mizell in our family corner. An Autism mom herself, she is a family advocate with Autism Delaware and an endless supply of resources for us moms who are new to this (you know, the ones walking around with huge eyes and shaky hands, overwhelmed at all that’s been dropped in our laps). She cares. She will help guide us through this process, and help us get everything set up the way it needs to be so it benefits Caleb the best. I had known her before all this started from helping the family I had worked for as a therapy assistant. I never thought I would actually need her help. Again, the Lord directs our steps and paths.
After the Evaluation and Eligibility/IEP meeting, I’ll be doing a follow up post to this one with how it went and what the plan is.
Would you be willing to help our family out? Would you be willing to pray for us? Prayers for the evaluation and eligibility/IEP meeting; prayers for a smooth transition to the new school environment; prayers for those working and guiding and helping Caleb; and prayers for Brian, Caleb and myself as we start this arduous but inspiring trek that many other families have done before us and many will do after us. Feel free to add us to your church’s prayer list, and please know that we have deep gratitude for each prayer offered up.
We know that with God, all things work together for good. We cling fast to that as we struggle to see through the fog and see what that exact good is, never doubting that He holds every one of us in His hands, just like the children’s song says.
One of my favorite sayings is from Laura Ingalls Wilder’s Little House on the Prairie:
There’s no great loss without some small gain.
This saying can be applied to all aspects of Life and teaches us gratitude for what we do have. Yes, we’ve lost a lot- dreams, patience, time, tempers, and sleep. But what do we have? We have faith, and grace, and peace, joy, overall health, brain smarts, giggles, goofy songs, thoughtfulness, and unconditional love.
I know we will persevere through this; we always do. I’m thankful and blessed to have a husband who will help carry the burden between us, in laws that help whenever it’s needed, and close friends who support and uplift my spirits as well as love and dote upon my son like no other. In other words, we will be okay❤️
Family Photos December 2017 at Gibraltar Gardens; Wilmington, DE. Photos taken by Jenifer Fekete-Santo of JFS Photography Design.