Ezra,  Special Needs Parenting

Ezra’s Story: from “typical” to a behavioral diagnosis

October 17, 2014 /
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This is day 17 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. Today, I’m sharing my son’s story.

This post was previous titled: Not quite “typical”…not quite “special” {for the mom of the undiagnosed child}

Ezra's story of receiving a behavioral diagnosis of ADHD and adjustment disorder, and my struggle as a mom to meet his needs and receive services before he received a special needs diagnosis.

When I wrote my first post about special needs in 2013, as a way of encouraging my friends whose sons had autism, How to encourage a special needs mom {when you aren’t one}, I was writing as the mom who “wasn’t one.” I was the bystander. I had the child who was soaring, soaking up information like a sponge – so far ahead of my friends’ boys who couldn’t eat or talk. The gap was obvious: my son was typical – their sons had “special needs.”

Now, our boys are four, and that gap is still there. Sara’s son is still on a feeding tube. Kathryn’s son still only eats a handful of foods. There are still therapies, special education, IEP meetings, and so many other things that these boys go through on a weekly basis that I will probably never comprehend.

But as age two turned into three and three neared four, I started noticing more and more about my own son that was different. There were no developmental or cognitive delays, but his behavior was taxing. At first, I chalked it up to those terrible twos – hoping that the threes would offer some relief and maturity.

After he turned three, everything seemed even harder for him. He was always the one making a scene or getting in trouble. We started getting reports after Bible study or MOMs group of aggressive behavior – hitting, spitting, kicking, tantrums.

He’ll get over it. He’ll outgrow this.

But it just got worse. The days got longer and harder. The arguing more incessant. The screaming louder and more frequent. Night-times continued to be a fight. And as he got bigger and stronger, his behavior wore on me more and more. And nothing…I mean, NOTHING…we did as parents seemed to work consistently.

My thoughts started to change from What am I doing wrong? to Have I missed something? 

Finally, we took him to the doctor. Our first evaluation, a developmental screening through a local non-profit, took place in February of this year. They told us that he was a normal, typical little boy. “He shouldn’t be drinking so much juice. He’s not getting enough physical activity. If you want someone to come out to your home, we can show you how to play with him.”

Perhaps I should have taken them up on that offer. But I was consoled by the words normal and typical. I didn’t really need help knowing how to play with him – I needed help knowing how to get him to behave.

They recommended seeing if he could qualify for special education. A few weeks later we had our evaluation with the school district. He passed with flying colors. “He doesn’t have Aspergers or Autism. He’s not developmentally delayed. He doesn’t qualify.”

Relief. Followed by frustration. Because we still didn’t have any answers, and the behavior just kept getting worse.

So, in the midst of screenings and evaluations, we enrolled him in private preschool.

“He had a rough day again today. He hit Ms. Susan. He spit at his friends. He had a meltdown.” 

The negative reports kept coming and coming. Not every day. But more days than most.

School ended for summer break. And for the first half of the summer, I felt like there was relief. He had finally figured out how to poop in the potty. He seemed to becoming more independent. And then…bam…another wave of awful behavior, this time more vicious and terrible than any we had seen thus far.

As I vented to my closest friends whose sons have sensory needs and Autism, I felt more camaraderie with them with each passing day. My son seemed to have more in common with their boys than he did with the typical 3-year-olds I knew.

I know he doesn’t have Autism, but… started preceding sentence after sentence as I related to them my reality of mothering this high-needs, challenging child.

And they listened. They validated. They saw the needs as being – while not quite the same – comparable and difficult in their own right. They encouraged me to keep seeking additional help for him.

I scheduled another appointment at Ezra’s doctor’s office and sat down at my computer to chronicle the first almost-four years of his life. And instead of seeing individual trees, I saw a forest. Breastfeeding issues, sleep problems, behavioral problems, lack of personal independence, delayed personal grooming, and a mild delay in fine and gross motor skills.

There’s got to be something going on here. There just has to be.  

The signs were pointing to “sensory processing” problems and I was hoping that he might qualify for occupational or play therapy. And so, I went armed with my document, ready to advocate for my child.

“What do you mean by sensory problems? Why are you trying to give your child a pathology? He seems typical to me. He doesn’t need occupational therapy.” 

Mama Bear came out. I got angry. I fought. I demanded. The tears were pushing out, but I stayed strong and asked to see her attending. That lit a fire. The referral was put in, and I left, ticked as all get-out. Had I not had a kicking and screaming child underfoot, I surely would have found a way to speak to someone else.

Oh the emotions I felt that day! The self doubt: What if I’m just imagining this? What if, because my friends have these problems with their kids, and they are so awesome, that this admiration of them has turned into me making stuff up to be like them? What if I’m crazy?

But, with each day that passed, each time they called me from the summer daycare program, each negative report from the church nursery – I knew. My son’s needs are beyond typical.

The occupational therapist we saw didn’t see enough to let us qualify for OT. Is he a sensory seeker? Yes, for sure. Beyond the typical range? Not so much. She encouraged me to work harder with him. Encourage him into independence. Stop doing so much for him as far as personal grooming. Take the time to manipulate his hands and teach him how to use scissors. And she recommended a behavioral therapist, which, of course, we wouldn’t be able to see without another trip back to the pediatrician for a referral.

I gave it my best shot. But my attempts to coax my son into independence were met with resistance. Getting dressed in the morning went from me forcing said wiggly child into clothes on my own (because it was just easer) to a half-hour’s worth of saying the same things over and over, dealing with him screaming I can’t do it! and It’s too hard for me! and clothes and shoes flying across the room.

Why. isn’t. this. working? 

Finally, I just started counting down the days until school started back up.

Surely, the routine of going to school five days a week will help! 

We saw his primary care pediatrician and an attending developmental behavioral pediatrician the week before school started. Finally – this doctor listened. He recommended a behavioral therapeutic day school program, a preschool replacement. And a behavioral therapist. More referrals. (It turns out, the referral for the day program didn’t get put in for three weeks.)

School started but there continued to be more phonecalls home. More physical aggression, this time far worse than what we experienced in the spring. More spitting and hitting and kicking and tantrums and being completely unswayed by timeouts and reward charts.

The behavioral therapist we had been referred to sat down with me. I told her our struggles.

Have you heard of this behavioral therapeutic day program? 

Yes, I was told 3 weeks ago we were getting a referral there, but haven’t heard a peep since! 

Three weeks into school, Ezra got sent home from school, and then the next day was suspended for three days. My mommy heart was just coming undone.

Finally, an intake for the therapeutic program was scheduled. I went armed with pages of notes, documents from all of our evaluations, videos, and audio recordings – and they too concurred.

He’s a challenging child. There’s definitely something going on. We think it could be sensory related. We want him in the program.

Relief. Anger.

After seeking answers, finally someone saw what I saw. Why it had to take nine months, I’m not really sure.

The very same week my son was expelled from his preschool.

It was such a weird place to be in for sure. Having a child as of yet undiagnosed, unlabeled – yet whose needs were so far reaching, so much more than the needs of the “typical” or “average” child.

A diagnosis doesn’t fix anything. But when it’s time to leave the mall and you are trying to put shoes on a 4-year-old child who is screaming literally at the top of his lungs, “Leave me alone!”…and seeing the looks on people’s faces…

Sometimes I think it’s easier when the mom can say, “He has xyz.” Because when there’s a diagnosis or a label, at least there is some measure of understanding from the general public. Accurate understanding? Not always. Complete understanding? Probably never. But there’s something that they could go home and Google if they really wanted to know.

Instead, all I had was a screaming child and no real answers. No way to explain why he’s acting this way.

And so, the comments came:

You just need to be consistent!

Consistency is key!

Remember, you’re the mom!

He’s the child, you’re the parent. Remind him whose in control! 

And I want to scream, or punch someone, or just say, “You have no freaking clue. It’s not that simple. It’s never been that simple.” 

Ezra’s behavioral diagnosis:

Related: “I think there’s something wrong with my child” ~ Steps to take toward a behavioral diagnosis

At the end of September (just a few days before this series was going to start), Ezra was given an initial diagnosis of ADHD and adjustment disorder that manifests itself in a mix of emotion (anxiety) and conduct (behavioral problems). As he goes through this behavioral treatment dayschool program (which exists soley for typically-developing children who have “behavioral and/or emotional disorders”), he will have another speech evaluation, another occupational therapy evaluation, and another diagnostic evaluation with a developmental behavioral pediatrician. His diagnoses could change or be further defined as he goes through this process.

At his new school, which he started October 6th, 2014, he is surrounded by a team of therapists. A therapeutic preschool teacher, recreational therapists, creative arts therapists, behavioral therapists, and a licensed clinical social worker – all assigned to his case to help him learn to cope with life.  We have already started to see improvements. We don’t know how long he will remain in the program, but the average stay is 6 months, with some children staying as long as a year.

I’ve written this, my story – my son’s story – for all the moms out there who are in this awkward state of quasi-“special needs” but have no real claim to the title. For the moms who have put in the hours at the doctors office or the school district and had the evaluations – but come up empty. For the moms who are seeking help and answers, but can’t seem to get anyone to listen.

For the mom who feels alone in the typical world, but still remains on the outskirts of what seems like a privileged “special needs” community. You know that “special needs moms” are exhausted, running ragged from therapy to therapy – but sometimes you envy them, because at least they have an answer, they have professional help. You’re just left with your child, alone in your quest for answers.

Maybe, the badge of “special needs” really isn’t all that important. What is important is you. Because you are doing the best you can. You find creative solutions, even with limited resources. Your tears and sighs are not going unnoticed.

Maybe this path won’t land you and your child with a diagnosis. But maybe it will. And it the mean time, you’re not alone.

If what I has written has resonated with you, or if you see your child and his behaviors in our story, I recommend reading this practical post by a special needs mom that really breaks down what behaviors are nothing to worry about and what could be indicative of a greater problem: TROUBLING BEHAVIORS| IS IT JUST A PHASE?

_____

More of Ezra’s story through blog posts from toddlerhood on:

August 2012: “Mommy and Me” ~ The Bigger Picture

January 2013: My slow journey away from attachment parenting

August 2013: Letting him be lonely

November 2013: Turbulence

January 2014: Creative Discipline: A Dad’s Perspective

January 2014: Second-guessing #whitespace

February 2014: On #whitespace and sending my boy to preschool

February 2014: I felt like a good mom today

May 2014: When your child does everything the hard way

July 2014: When you are finished with being a mom {on hiding under the covers and calling it quits}

August 2014: Beyond the ABCs and 123s {in which preschool resources aren’t enough}

September 2014: When the camel’s back just keeps breaking

September 2014: Tactics of infancy {two steps forward, twenty steps back}

October 2014: Life as a Special Needs Dad (part of Ezra’s story from his dad’s perspective)

Update Fall 2015:

Ezra’s stay in the therapeutic day program lasted six months (from October 2014 through March of 2015). During that time, he was given another occupational therapy evaluation which revealed “definite sensory processing differences.” Sensory Processing Disorder has not yet been accepted into the DSM, but we have moved forward with this as a working diagnosis when dealing with Ezra’s needs. He started weekly occupational therapy in November of 2014.

Therapy was rigorous and hard for our entire family but SO worth it. While Ezra continued to struggle with behavior at home, we saw a lot of improvement across all settings and developed an arsenal of tools to help him – and for him to help himself – cope with life.

We tried him on a non-stimulant ADHD medication, which was helpful for a time, but caused more sleep disturbances than what he already deals with. We took him off of it at the beginning of the summer.

January 2015: “It’s so foggy” {a day in the life of ADHD}

February 2015: A different kind of mother’s love

As he was getting ready to graduate from inpatient therapy, we looked to the next steps for him. We toured over 9 different private schools, and he went through another preschool intake evaluation with the public school system to see what special education services they could offer him. This time, they qualified him for their “exceptional child” program and gave him full-day placement in a special needs class at a school less than a mile from our house. After careful consideration of the needs of our entire family, we decided that this would be the best option for him.

March 2015: Believing in my son {an update}

March 2015: Moving beyond the ADHD diagnosis

He struggled with the transition and his new teachers and classmates, but we made it through the rest of the school year (from April to mid-June).

Update May 2015: a very long general life update

June 2015: When the last day of school feels too much like the first {thoughts on surviving a very long year}

During the summer, he attended a 4-week summer program at a private preschool and did fairly well. They had a lot of sensory supports in place and his days lasted 4 hours instead of 6. When those weeks were up, he spent 5 weeks at home with me where we utilized 2 hours of childcare at the YMCA almost daily and tried to stay in as structured a routine as possible.

We also started seeing a play therapist as a family twice a month.

In August of 2015, he went back to the public school. While he moved up a class, he has most of the same classmates, 1 teacher and two aides with special needs experience. He is doing well for the most part, but still needs a lot of adult redirection to be successful and struggles with not being aggressive with his peers. His next IEP meeting will be in February of 2016. We have not yet decided where he will attend kindergarten.

Home is where Ezra seems to struggle the most. Whether it’s five years of learned behavior, my husband’s anxiety disorder, the new baby, or just being safe to fall apart – we struggle with him all day, every day. We can only hope that with time, maturity, continued therapy support for all of us, possible future medication management, and consistency in his routine – we will continue to see improvement in his behavior and have a calmer home. For now, we are just holding on.

Update Spring 2016

In November of 2015, we started Ezra on ADHD stimulant medication. We have had a WONDERFUL experience with this, which you can read about here: Our ADHD Medication Success Story

ADHD meds have made a world of difference for Ezra. We have had to tweak dosages, formats, and administration times several times over the past few months, but it WORKS! We also increased his occupational therapy to twice a week.

In spite of the improvements thanks to the medication, Ezra has still continued to struggle with maladaptive behaviors – to include angry outbursts, meltdowns, and physical aggression. After several months of seeing limited improvement with outpatient counseling with an LPC, in February of 2016, we applied for Intensive In Home behavioral therapy services. He is currently undergoing this treatment. He has a team of 3 clinicians who work with him both at school and in the home. This will last 3-5 months.

January 2016: Maybe your special needs child just needs you

February 2016: Even if we can’t find heaven: cultivating love for my special needs child

February 2016: Pursuing self care and asking for help (in which we make some changes)

Ezra is still struggling with school. The class he is currently in really isn’t the best for him on the cognitive level. His intelligence scores and academic testing put him as functioning at a 6-8 year old level. However, his behavioral and social skills fall at a 2-3 year old level. This was discussed in detail at his IEP meeting in February of 2016 during which they also set up a Behavioral Intervention Plan (BIP) for him. In May, we will have his IEP transition meeting to discuss his options for summer care and Kindergarten. We will not know his Kindergarten placement until the middle of June, but are hopeful that next year, he will be in a more appropriate setting to meet his needs.

Update Spring 2018:

It’s been some time since I’ve written an update about Ezra. He has made significant progress in the last two years.

In May of 2016, at his IEP meeting, his team initially wanted to “mainstream” Ezra and put him into a typical / regular education kindergarten class. His dad and I felt that this would be a mistake. We knew that Ezra needed a smaller class size and more one-on-one education than a regular education class would allow. After nearly an hour of deliberation, we still had not reached an aggreement with his IEP team. At that point, the LEA representative said that when there is an impasse such as this – the school defers to the parent if possible.

So instead of a mainstream class, we opted for a placement called “Social Behavior Support.” This consists of one teacher and two aides in a class of ten or less. The class spans K-2 children who have social and emotional needs but no cognitive deficits. We decided that this would be his setting for kindergarten.

June 2016: Preschool Graduation: Ezra’s Trials and Triumphs

September 2016: This is how we survived the summer

We did not find out his school placement until just a few days before he started Kindergarten, but he was placed in a school about 3 miles from our home (and we have since moved even closer).

This class has offered Ezra both incredible support and opportunity for academic growth and achievement. Because of the small nature of the class, they were able to individualize his learning. In kindergarten, he was doing first grade math and reading – while still being supported and able to work on his social skills through the use of social stories, visual aids, calming bins, and “Zones of Regulation” materials.

In September of 2016, Ezra graduated out of Intensive In Home Services after seven months of service (this is far longer than IIHS normally runs). We also made the incredibly hard decision to leave the OT clinic we had been using – due to its distance from our home and the strain of traveling with a special needs kiddo AND a toddler so far twice a week. This decision was made easier because Ezra’s current therapist was moving out of state, so the transition was as smooth as it could have been.

We took a brief therapy break, then began in-home OT with a local clinic and resumed outpatient counseling for Ezra with the LPC that he had been seeing throughout the summer and fall of 2015.

As stability and consistency increased, our stress levels decreased. Ezra no longer was demonstrating any physical aggression toward us – and only a little bit at school and with peers.

Overall, we’ve learned how to “manage” Ezra better. We found ways to take what we had learned in the parent training aspects of day treatment and IIHS and found ways to adapt those things to meet the needs of OUR family. We’ve simplified his rules and do our best to stay “consistent.” (It’s a true illusion, but we try!) Most of all, Ezra grew and mature, which made things easier (slowly) over time.

November 2016: Dear Moms of Preschool Boys: It gets easier, I promise

December 2016: When the Christmas spirit is no longer broken and joy is less of a choice

January 2017: Attention needs: the ADHD child and the momma who loves him

January 2017: A very long life and family update (with lots of pictures!)

March 2017: ADHD Hack: the only four rules we have for our ADHD child

At the beginning of 2017, my husband got a pay raise. In March, we put an offer on our first home. In April, we moved into a wonderful community with a huge basement playroom, a fenced-in yard, and kids all around who regularly are seen riding bikes and running through the neighborhood. It’s quite reminiscent of days-gone-by. But yes, Virginia, there are still neighborhoods like this that exist! Our neighborhood also has a pool.

With Ezra in an even closer school, we began to visit a closer YMCA  – which gave Little Brother and I a much-needed routine while Ezra was in school. We also use the YMCA on the weekends, school breaks, snow days, and summer.

Again – consistency in schedule, routine, and not driving all over town has made things much calmer. Our church is also close-by and has done much to help us through some of our darkest days of special needs parenting.

March 2016: How to help your special needs child succeed in church

April 2017: Never enough: an honest look at what special needs parenting is like

Halfway through kindergarten, they began to push Ezra into a regular education kindergarten class. First – just for specials, lunch, and recess. At the beginning of 2017, they started with one subject at the end of the day – social studies. If he was managing okay during the day in the SBS class, he would get to go to regular at as an incentive. He responded incredibly well. At his kindergarten IEP meeting, he dropped his preschool exceptional child designation of “Developmental Delay, Atypical” and received his grade-school designation of “Emotional Disability.” They also increased his regular education allotted minutes per day, allowing him to add more subjects in regular education if they deemed he could handle it.

June 2017: My Broken Hallelujah: Thoughts on the Last Day of Kindergarten

The summer had its challenges, of course, as it was our first summer with no extra programming for Ezra. Thankfully, Little Brother was becoming a good playmate for Ezra. Between LB, the YMCA, the neighborhood pool, and afternoon quiet times of stories and K’nex – we developed an off-school routine that worked well.

Another factor in having a calmer summer schedule were not having to travel for OT and knowing where he would be going to school for first grade: he would remain with the SAME teacher and the SAME aides in the K-2 SBS class that he was in for Kindergarten. The only unknown was who his regular-ed teacher would be for the subjects he would push-in.

Another thing that we discovered over the summer was a high correlation (and causation) between his bowel habits and his behavior (including sensory seeking, attention problems, verbal aggression, and overall anger/meanness). To honor his growing identity, I will not divulge too much about this. But we have added both medical and natural supplementation to regulate his digestion. It’s an on-going problem, but when his tummy is regular – he is FAR calmer, more focused, less sensory-seeking, and kinder.

Over the summer, I began to feel frustrated with taking him to outpatient counseling. While he had good rapport with his LPC, I didn’t feel like it was really accomplishing anything (other than stressing me out). His LPC agreed that he needed an in-home approach, and for the first time suggested that some of the lingering behavioral problems that were concerning may in fact be AUTISM.

This is the first time that ANY professional has suggested Ezra might be on the spectrum. We found an LPC through another company who could work with our ENTIRE family, in-home, every weekend. This was helpful because Russ was able to join in the therapy.

Much of the distress within our home is due to how Russ and Ezra interact with each other (as they BOTH have mental health problems, anxiety, and are so darn alike). It’s still an ongoing battle with those two, and I have honestly given up trying to “fix it.” (I need to write a blog post about that!) I think that their relationship may always have its challenges, but we continue to see improvement the older that Ezra gets.

This LPC also sat down with me privately and we went through the DSM-V autism spectrum disorder diagnostic criteria. She felt confident in giving Ezra an autism diagnosis. Not everyone recognizes an LPC’s diagnosis as valid, so we are also pursuing independent autism testing at ABC of NC, a local autism organization. Thanks to a massive wait-list, this won’t happen until July of 2018. We are fine with this. An official ASD diagnosis won’t really change much at this point. He’s already receiving school services and therapy services and doing very well across settings, but it may help us in the future. Seeing him as “autistic” has also helped both Russ and I deal better with some of those little “quirks” that we were seeing that we could not seem to understand or “fix.” (Interestingly enough, we are seeing MORE stimming-like behaviors such as ripping things, as well as rigidity and social blind spots the older Ezra gets. I feel under DSM-IV he may have more readily been diagnosed as autistic under the Aspergers diagnostic criteria.)

This LPC retired at the beginning of 2018 and we decided to end all behavioral therapy / counseling for the time being and just try to go it on our own and be a “normal” family for a while. So far, so good.

For first grade, they altered Ezra’s day a bit. He started the day in regular ed for reading and language arts, specials, lunch, and recess. Then he would return to SBS for math and social studies, ending the day there. He did so well with that, that they upped his minutes at his 1st grade IEP meeting and designated him as a REGULAR ED student who receives special needs services a “resource services.” Over the last two weeks (April, May 2018) he has spent a few days ALL DAY in regular ed. Most days he only does math in SBS as a way to calm down and have less noise in the middle of the day. As of May 1st, they have reduced his special education minutes to ***90 minutes per day!!!***

He has only had one instance of physical aggression towards a peer THIS ENTIRE SCHOOL YEAR! All of his teachers have glowing things to say about Ezra.

Between home and school, Ezra is working on second grade math and reading at a 3rd grade level (or above). He is showing giftedness and intense interest in the areas of math and science. He continues to place extremely high on all academic-related testing required for his grade level. His school has an “academically gifted” program that starts in 3rd grade. He will undergo rigorous testing during 2nd grade to qualify for AG placement for third grade. His teacher has already thought ahead and written in special accommodations into his IEP so that he can perform as well on the AG testing as we know he is capable of doing – such as being able to test one-on-one and have frequent breaks to help with focus.

For second grade, he will again use the K-2 SBS class as his “home base.” His SBS teacher (who we will have for yet another year!) will continue to be a go-to contact for us and manage his IEP. He can ALWAYS go back to the SBS class any point in the day he is in distress or needs extra support.

He also NO LONGER needs an aide at church!

We continue to have to adjust his medications and our parenting as he grows. It’s not always rainbows and butterflies – some days we feel like we are dealing with two 2-year-olds (especially when both of the boys are having an “off” day).

BUT – the consistency of home, church, school, YMCA, neighborhood all unchanging for the last year and going forward from here on top of managing his bowel habits better on top of Ezra just GROWING UP AND TURNING INTO A BIG KID – it’s hard to believe he is the same child that I wrote this post about initially nearly four years ago now.

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