This is the story of my son, Eli. I'm not telling his story for the purpose of getting attention, to have people feel bad for me, or to get him special treatment. He is a happy, special child who I hope knows he's loved and cared for and has his needs met.
I'm telling his story for other parents who struggle. I'm telling his story for parents who are searching. I'm telling his story for a little therapy of putting it all in words for myself.
All differently wired people (I LOVE this term better than special needs or other terms because it's so open ended with no negative connotations associated with it!) have their own story that may have a mix of physical, emotional and mental issues and it's all so complex in how it may or may not be inter-related. And caring for these differently wired kids is so HARD. Life is hard, and motherhood is hard anyways, but feeling like you're running in circles constantly and not sure if you're ever doing anything right is super hard.
So here's the tale, from the very beginning. So first, good ole pregnancy. Before I was pregnant with Eli I had 3 miscarriages. 1 "normal" one (as in completed itself and not even to 7 weeks before it happened). The second miscarriage I found out about the loss at the 8 week visit when we had a ultrasound just to check, not because of any problem. They said maybe I had my dates wrong, but I knew they were wrong and after a second ultrasound 4 days later, I had to take medication to complete this miscarriage. The next time I was pregnant, we did an ultrasound at 7 weeks and we had a heartbeat! We were so excited and glad we got past a hurdle, but then 4 weeks later I started spotting and that ultrasound showed no heartbeat. Medication again, and lots of testing. We found I tested positive for antiphosolipid antibodies which means essentially my body thought the placenta wasn't supposed to be there so clotted off the baby and caused the demise. Why would I share all of this hardness? Because, I have no idea if any of this had anything to do with the future. There's nothing I could change, but it's the first question we have as mothers- did I do something wrong? For the next pregnancy I took aspirin and extra folic acid daily and had many ultrasounds to check for clots and growth. And it worked! I was nauseated and threw up for 26 weeks in the evening (apparently morning sickness wasn't my thing, evening sickness was), had a few weeks of good pregnancy experiences, then had horrible sciatic pain the rest of the time. I was induced at 39 weeks due to the fact I couldn't handle the pain and he was getting big. Delivery had some mild shoulder dystocia but otherwise normal. We had our beautiful baby boy.
Newborn phase was pretty normal. I slept better through the night even with a newborn because I no longer had the nerve and back pain, and our family settled in.
His first winter he had some pretty bad eczema, but living in cold climates that wasn't unusual so we didn't think anything of it. He was growing like normal. He didn't do well with rice cereal until close to 6 months and the same with baby food. We didn't think anything of it- babies accomplish things in a range of time.
At 7 months he was still 100% breastfed except some occasional cereal and baby food that we still had some trouble with and we were getting ready for family vacation in a month, so we wanted to try baby formula so I didn't have to pump so much on vacation. A baby bottle with 2 ounces of formula and 4 ounces of breastmilk sent us to the Emergency Room with him having projectile vomiting and his lips, tongue and throat swelling. Epi, steroids, breathing treatments later we went home and told to avoid milk with him. We followed up with the family doctor we saw at the time and were told to avoid any formula with milk- try soy milk. I just decided to keep breastfeeding until he was 1, but no one told me (and I didn't think of it) to eliminate milk from my diet. No one suggested any other things. Just avoid giving him milk.
His eczema kept getting worse even with spring time arriving, and before we went into his one year appointment one of our wonderful daycare providers and I were talking about how he did so bad with solid foods. He could barely eat a cracker and at 1 the state food program doesn't allow baby food anymore- he should be eating regular (age appropriate of course) foods. We went for his check up with these concerns and was basically told he was late to cereal so he'll be late to other foods. Do cream more consistently for the eczema.
That didn't sit right for me, so I switched to a local pediatrician. She immediately referred us for blood work, allergy testing with the best pediatric allergist in the area, and first steps program for nutrition counseling and speech therapy to help him eat. Unbeknownst to me, he had went from over 90% of the growth chart at 6 months old to NOT on the chart by 1 year and actually lost weight between his last visit with the other people and his first visit with them. My child was failure to thrive.
We got his allergy diagnoses- dairy, egg, wheat, soy, peanut, tree nut, beef, dog, cat, and other environmental allergies. After a 2 hour appointment with the allergist where I sat in my car afterwards crying we were on a new road. He was diagnosed with oral aversion from the speech therapist and we added on occupational therapy to help with his sensory issues.
We started making progress and by Christmas his skin had mostly cleared, we had figured out mostly the food, and he was starting to gain weight again.
So we found a new rhythm and things were good for awhile. His speech was VERY delayed so we continued with speech therapy even after he could eat because we needed to be able to talk and communicate. He could say a handful of words at 2 years old and missed every speech milestone. Cold season of 2012 moved in and we got a new diagnosis. After walking Ella to her bus stop, Eli would hold his hands out screaming and they would be red and white and freezing! After blood work we had a diagnosis of Raynaud's syndrome. Very rare for his age, but clearly the culprit. We needed to protect his hands, feet and face from cold or he could have major pain and long term consequences from circulation issues. This was when we switched our plans and started thinking about moving to a warmer climate. Later that Spring Eli had a major and his first asthma attack. He was kept overnight in the hospital for observations and breathing treatments and we had another thing on the list.
The next diagnosis came a few months later- the Lion's Club came to the daycare we used to do screening photos of the kid's eyes for free. Eli got a special letter. His eyes had major abnormalities and we were advised to follow up with an eye doctor ASAP. He had severe myopia (nearsightedness) and he not only needed glasses but he needed bifocals and eye drops to slow the growth of the eye or else he would be a risk for retinal detachment as an adult. I found out after this that my family has a history of this problem- but usually rears it's head in middle school. This was when we found out his letter recognition wasn't from the speech delay but he literally couldn't see the letters.
It was around this time we also went to the dentist the first time. The first dentist we tried didn't work out because their equipment wasn't small enough for his mouth so we got sent to a pediatric dentist. You know things are going well when the dentist comes out and asks if you had high fevers during pregnancy. His enamel on his teeth wasn't fully formed and he had several cavities starting and very weak teeth. There was no way to know if his adult teeth would suffer the same fate. We put caps on some of his worst teeth.
After this, we had another break in new things and continued with life. He passed a soy and egg challenge and we were able to start eating those things again. He graduated speech therapy before moving because he was up to par with age goals and we moved to a warmer state where we didn't have to be obsessed with holes in his gloves.
Then we started pre-K. This is typically done as a 4 year old, but we did it for Eli at 5 years old because he was behind and we didn't think he'd be successful in kindergarten.
We got reports of him not listening well and rough housing with other boys. We didn't get any reports of any educational issues. We had him re-evaluated by the PEEPs program- an early intervention program similar to how we got speech and occupational therapy in Indiana. He was low on the scale but didn't qualify for services and was thought to not be related. These reports continued for Kindergarten, and then in first grade we got called in more than once for behavior.
We thought and prayed about options and decided to go to public school where they would have more support staff and he could be evaluated. We met with the school officials the spring before he would attend to have a discussion about testing and help. The plan was for him to start the 2nd grade school year with a 504 plan for accommodations and hope between that and a different structure he would thrive. The second day of school I called to see if I needed to sign the 504 paperwork and I was told it would take a week or so for the teacher to first decide what may be right for Eli. 3 weeks later after we had problems with asthma again and jury duty for me, we got a report card home filled with Ds and Fs. I called the school livid. What's going on?! They were supposed to be helping. A meeting was scheduled to sign the 504 so they could start doing accommodations. I was told at that meeting I had to wait for 6 weeks to see if these would work before I could sign for testing. (I found out later from the head of the Special Ed program from the district that he should have been starting the process for testing immediately at that point because of the obvious delays and problems). I marked the 6 week date on the calendar. He had out of school suspension 2 times during that 6 weeks, his grades continued to get worse, and he was threatened to not be able to ride the bus for behavior. As soon as that day came I called and requested a meeting to sign for testing and evaluation for an IEP. We had the meeting within a week but this was right before Christmas, and he was suspended again for kicking his teacher.
The school had 60 school days to complete the testing, so winter break didn't count towards those days, but the school did change his classroom to teachers who wanted him and he bonded with and his behavior had improved somewhat but his school work did not. He started counseling with a private therapist. I called multiple times in February to see if his testing was done with no return calls and eventually called the district special ed coordinator who made the meeting happen.
The meeting was devastating. We were expecting that he was a little behind and struggling so he was acting out. Not that he has almost no short term memory. Not that his IQ is one point above intellectual disability. Not that he had severe processing and learning disabilities. We talked about accommodations, services, and how to try to help him. We talked about further testing to see if he should be in the intellectual disability program not the general education program (kids who progress through the ID program eventually get a certificate of completion, not high school diploma). This was life altering news for me and him.
At this same time, Eli broke out in psoriasis all over his head, face, upper body and groin. We know what this diagnosis well as his father has the same problem- but usually it appears in puberty. But since Eli likes to do things early, he started at age 8.
He was miserable, itchy, flaky and the kids at school called him horrible names like monster. He was put on multiple topical steroids to try to keep it calmed down, but then his behavior got significantly worse. He had a very bad issue at school one day where a teacher ended up getting kicked hard in the head. She described it as very deliberate (looked her in the eye and took his shot) but afterwards it was like he came out of a fog and was so apologetic without being told to say sorry. He was suspended a few extra times during those few weeks left of school.
We had one last IEP meeting at the end of the school year where we got the results that he was still borderline ID, not clear which way to go and we decided to retain him in second grade. One of his teachers broke down crying in the conference because she said she truthfully didn't think even repeating second grade would help him be prepared for success in third grade. We signed consents for a behavior plan to be done at the beginning on the school year to try to improve behavior and he was approved for speech therapy starting the next year.
Through the summer he was put on injection medication for his psoriasis and it cleared quickly with no side effects. We decided to make appointments for testing outside of the school- we got a new pediatrician for a fresh look and on the waiting list for a child neuropsychologist. We also saw a pediatric rheumatologist to make sure there wasn't anything additional to do with the psoriasis and they cleared us unless he started having pain. The pediatrician recommended genetic testing and we got an appointment scheduled there too.
The second year of second grade started typically- he destroyed other kids belongings, was told he was gross because he stuck his fingers in his mouth all the time, and refused to do his school work.
We were called in to have a discussion the first week of school. He started fighting about going to school quickly- he didn't want to. About a month into school we got a report card- one C, the rest Ds and Fs. I got phone calls about him eating food he wasn't supposed to (maybe cheese?), I got phone calls about fights, I got phone calls about him yelling, I heard from friends that he would just be running around the school and take off. One day he stuck his finger down his throat to make himself throw up so he didn't have to go to school. That was it for me. I called and asked where his behavior plan was. They hadn't started working on it and we had been in school for over 2 months. I called the head of the district special ed programming and left ALL my complaints again. Someone from the district came to the school and started the behavior plan process (interviews and watching him in settings) and we had an IEP meeting to implement the plan. The phone calls continued and if anything continued to get worse. Eli was playing the system at this point- he knew he had to do more and more to get sent home so he'd raise the game stakes.
During this time he also became completely attached to his teddy bear Chocolate and became more scared of the dark- he wanted more and more night lights. He had certain routines that if we didn't follow them bedtime would take forever and end in screaming during the school week.
All of these phone calls and meetings were very stressful for me. Every time I saw the school number on the phone I would cringe and have a mini-panic attack. I wanted the calls to stop. I wanted my kid to act normal. I wanted to not have to deal with people anymore. I wanted to cry.
Luckily, about this time we were finally getting results from the places we were waiting on. Eli tested positive for a 15q11.2 genetic deletion which has a lot of ties to developmental delays and problems such as austim, ADHD and more. The neuropsychologist diagnosed Eli with severe learning disability-specifically dyslexia and ADHD that was especially triggered by the anxiety from the learning problems. We finally had some diagnoses to work from.
We started researching reading programs for dyslexia and we had another IEP meeting with the school. I asked for a special type of reading recommended by the neuropsychologist and we were told they couldn't do it. They didn't have the program or someone trained to do it. I asked about sensory processing also and asked for an OT evaluation and signed for another evaluation about needing a special classroom for behavior. This is when I started looking into other options. Even with the behavior issues they would have to do more interviews and more data collection to see if he needed to be in the other type of classroom, but I was worried he still wouldn't have the underlying education issues fixed which were the cause of most of the behavior. Imagine being 9 and not being able to read anything and sitting in a classroom- I'm not sure if he was bored, annoyed, or frustrated- probably all three on different times of days. He needed help with everything and God bless his teachers but he didn't have a one on one so I'm sure he didn't get as much help as he needed even with the IEP accommodations (honestly- they were supposed to read every word on the pages to him and I doubt that happened- how could it when the teacher has 20+ other students?).
After some research- we pulled him out of the traditional classroom and did our county virtual school. Luckily 2 months prior I got a new job that was part time (to reduce my stress, yeah, right.) so between myself and my mom we were able to stay home with him. They sent us all the course material for free and I was Eli's learning coach while he had online teachers. Realistically, I'm his teacher. I have to do all of the accommodations and make sure he understands. But we know he's getting help for everything.
Now for those who are against homeschool/virtual school because of "not getting socialized"- let me paint you a picture of a typical 2nd grade day for Eli after the first week of school.
He physically gets put on the bus by me after kicking and screaming at home that he doesn't want to go. At the bus stop he was playing fine with the other kids, but now that the bus pulled up it's not fun anymore. He has to sit right behind the bus driver because he's not trusted to sit anywhere else due to incidents on the bus (some he hit on purpose, others accidental but hurt someone anyway). When they get to the school building, sometimes he'd get off to play, but other times he would sit on the bus and refuse to move. He'd refuse to get off. These times they would go get the one teacher he trusted from last year to ask him to get off the bus and he usually would. Once he got to his classroom he would go sit at his desk that was pushed off the side by himself. Yes, he earned this by destroying other children's property and touching other children, but he was still segregated. He doesn't understand the work the other kids are doing, so he starts breaking his own things, or he'll lay his head on his desk to sleep, or he'll take his shoes and socks off and run around the classroom depending on his mood. He often would crawl around a bark like a dog- sometimes the kids would laugh and smile at it, especially at the start of school. He would get in trouble for some of these things and sent for time outs. Sometimes he'd sit quietly, sometimes he'd run around or bang on things. He liked getting sent to the office to get away from school work, but when they found out he was doing it on purpose the vice principal would come to him instead. He liked pull out classes usually, but sometimes he didn't want to do his reading and would kick that teacher for trying to make him do it. He didn't always get to have recess because of his behavior. At lunch time he ate alone at the end of the table. When we asked why we were told because the other children were "grossed out" by his behavior. I asked what he was doing that was gross and why it was allowed to happen because he eats with normal table habits at home. That was never answered. If he did work he was supposed to do he would sometimes get treats, tickets or candy. Sometimes it was fun getting these so he would be good for the teachers, but other times the worksheet looked too hard so he wouldn't try. At the end of the day he would come home on the bus and be ready for whatever consequence may be waiting at home for whatever behavior may have happened at school.
I never once during his second year of second grade hear him refer to anyone's name as a friend.
So, if public school is socializing my child- NO THANKS.
In his first one-on-one meeting with his virtual teacher, she did a reading with him and noticed his severe delay. She said he needed a special reading program and put us in Mark 12. Virtual school takes awhile to figure out and get the hang of- and then Mark 12 was a new beast with over 90 minutes of instruction per day (on a good day when he'd cooperate). We started getting the hang of things and then Eli jumped off a truck. Literally. Calcaneus fracture (which is kind of rare and takes forever to heal)
Like everything in his life- Eli took this in stride and thank God we were homeschooling because I can't imagine this kid trying to get on a bus with a walker.
We had our final IEP meeting with our home district to add on Occupational Therapy services since he qualified for handwriting and fine motor skills. Since then he's gotten Speech therapy and occupational therapy at the school he went to once a week.
We actually had an amazing rest of the school year (except the last week when he was over it)! When we left traditional school his IReady scores showed kindergarten level scores. No new diagnoses, no new problems, he passed every class As and Bs and by the end of his second year of second grade he was first grade level in I-Ready.
Summer came and he had a busy time with visiting family and having fun. In the middle of the summer it was time to do more dental work. Eli has never liked the dentist and even cleanings are difficult, but he had done well with his pediatric dentist with laughing gas to calm him. It was time to take care of an issue we've known about for years but waiting for the right time. Eli had 2 extra adult teeth we couldn't allow to come in due to potential impaction problems. He had his first sedated surgery to remove 2 baby teeth and 2 extra adult teeth underneath. We were supposed do some orthodontic work after this- but he would refuse to open his mouth, kicked at the tech and just refused. We rescheduled for a few months later hoping the holes don't close in the meantime.
As the next school year approached he starting having more mood outbursts. He also started begging for people to sleep with him. He said he didn't want to be alone. When he would visit his cousin he would refuse to go on a floor of the house that there wasn't other people on (the bathrooms were upstairs and downstairs and he wouldn't go alone unless someone was on those levels doing something else). He now won't go upstairs in my parent's new house without someone with him. In our previous rental 3 years ago he had no problems with this.
The start of school was actually on the road- we went back to Indiana for a wedding- and we had a good time doing school in the car and at other people's homes.
Little did we know that would be the best school week for awhile. I know third grade in public school is a different beast, but I learned online school is no different. We had more requirements, more intensive projects, and more online classes which equals more stress and more fighting. His homeroom teacher also changed after the second week, so this added to difficulty in finding a new routine.
With all this stress and frustration, he's still getting decent grades but some days is literal kicking and fighting, some days are flat out refusals, and the rest of the days is passive acceptance. We haven't had a day to be excited to do school. There have been many changes in the way virtual school is done and each week we either get conflicting communication or a new way they are doing things. His homeroom teacher has been amazing at working with us- but when we think we have a good plan something new gets added.
We returned to the dentist for a normal cleaning where I literally had to lay on top of him to hold him down so they could clean his teeth. He refused to do the laughing gas- probably associating it with the surgery. We then had an orthodontic appointment and I pulled out all tricks I've learned from every psychologist, therapist, book and podcast I've ever touched. We made a plan and talked through fears ahead of time, we planned rewards, we planned and used distraction techniques. And it worked! But afterwards, I was so emotionally exhausted I also was physically exhausted and wanted a nap. To go through hours of talking, prepping and worrying for a 20 minute dentist appointment is the opposite of fun, especially after having to pin him to a chair for him to let someone brush his teeth 2 weeks prior.
We've set up appointment to revisit with the pediatrician, neuropyschologist, and geneticist. We want to get him back to counseling a least awhile to see if there's any progress from their point of view (insurance hasn't covered it for a year now). I want to know if he's regressing or not really progressing except reading. I want to know if I'm on the right track. I want to know if he should really be in the ID room (the psychologist said the IQ testing isn't a true representation without adequate reading skills). I want to know if we need more diagnoses or more services.
I want someone who is professional and not bias to tell me I'm on the right track and if we need to tweak in the plan for Eli to have the most success. In my opinion, the trickiest part with Eli is we don't know how much is physical, mental or emotional. They all work together and so if he's having stomach issues but doesn't tell me but has outbursts all day I just assume it's a bad emotional day, but maybe it's really physical? Or maybe he just doesn't want to? How much do I push? He's also super inconsistent. Things that work one day don't work the next. Parenting differently wired kids is a roller coaster without a seat belt. Hang on tight.
I say this is Eli's story- but really it's the first few chapters.
Some things I've learned along the way-
1- Don't hesitate if you notice a problem. If your gut says something is wrong, something is wrong. Even if someone says it's probably normal don't listen- start going through channels.
2- For sure don't hesitate if it's a school related thing. The process to get anything done in the school takes WAY TOO LONG. I understand why- they have a lot to do and a lot of students. But the second there is a concern ask for evaluation in writing! Don't let them delay you- they'll have ideas that sound good but are really delay tactics. Say yes you'll try stuff WHILE you wait for test results.
3- Every child is unique- one size does not fit all. Don't let anyone try to cookie cutter treat your child unless it sounds like the right treatment for your child.
4- Don't take no for an answer when it matters. Find alternative ways to get what your child needs even if it takes going around or over someone.
5- Be respectful even when frustrated. While I've had a rough time with the school, I haven't made any enemies either. I respect that they have way more students to deal with than mine, but I also expect them to do the job they are there to do. The teachers and administrators still talk to us when we come in for therapy and enjoy Eli's presence. They still answer questions I have about how to work things out and they are genuinely glad he's in a better situation for him (and not just because they don't have to deal with it, although I'm sure there's a tiny spot of that in there). They've seen me cry (some have even cried with me), they've heard my complaints, and they share my frustrations often.
I'm sure I'll publish this and think of 10 other things that should have been added, but I hope this helps someone else that's in the beginning of their journey.
Blessings in Health and Happiness-
