Neurology Is Not My Best Topic

It took me five years to get a BA in Clinical Psychology- I changed majors, schools and had my boys. I didn’t take a neuropsychology class.

I had a mini-stroke in 2013- a migraine went really bad. Afterward, I started having migraines, which are absolutely zero fun. They make me sleepy, cranky, nauseated and for some reason, crave sour candy.

I’ve worked with kids with developmental disabilities and have an autistic kid.

And yet, I know nothing about neurology.

Until a couple of days ago, I also didn’t know what could be going on with Lily.

If you need a refresher, please read these posts:

Special Needs Round Two

Back to the Beginning

She’s currently in Occupational Therapy (OT) and seeing a dietician. Both have been extremely helpful. I was looking into getting her a full neuropsychological evaluation, like Julian had in 2011, but most places are full or aren’t taking new patients right now, because you know, there’s a global pandemic going around.

Plus, her insurance doesn’t cover a penny of what will be a very expensive evaluation.

She’s worth it, but honestly, I decided to sit on this idea until things get back to some sort of normal.

A Crash Course in Reflexes

A couple of days ago, Lily’s OT, Amy, tested her reflexes.

She tested positive for retained STNR reflex, and all I could say was “What is that?”

I’m not afraid to say that I don’t know something, because how else am I going to learn? In this case, I felt (and still feel) that I was way out of my knowledge base. We thought maybe severe anxiety and avoidance behaviors, she was even tested for ADD, which she does have.

Amy explained it to me in a simple way- there’s a reflex that babies develop between 6 and 9 months old. It should resolve before the first birthday. This reflex makes the top and bottom parts of our bodies work in sync to move efficiently. If the reflex isn’t resolved, this can lead to some developmental delays. For example, when you learn to swim, your arms and legs have to work together to do so.

Those who have a retained STNR reflex can’t swim well because they can’t get their body to work together at the same time. It’s a neurological issue that can’t be medicated. Lily will need OT for a while, and at some point, we hope that she can learn to ride a bike and other independent activities.

There’s a connection to ADD/ADHD for this, so it makes a lot of sense to me. It explains a lot of Lily’s issues and now I can somewhat meet her where she is.

On the outside, she’s a regular 12-year-old. She loves clothes, jewelry, blankets and boy bands (ugh). However, the way her brain works is different from a lot of other kids her age- she’s socially and emotionally immature, has core and muscle weaknesses, and of course, issues with coordination.

I am not sure what this means for 7th grade for her- she may or may not qualify for an IEP. She may need an evaluation through the school to do so. I’m also not sure if she will be able to live on her own without assistance. I have no idea.

She’s 12, but I have to think about her future. I may need to become her guardian when she turns 18. It’s a lot to think about and writing this post is helping me process it.

I wish there was more that I could do besides taking her to OT. As far as I’ve seen, there isn’t much anyone can do besides help her resolve this reflex and since I’m not an occupational therapist, I can only follow Amy’s recommendations.

I read up a bit on this and some of it went way over my head! I think I understand the important parts. We have answers, or the beginning of them, and that’s what matters.

The Benefits of Early Intervention

Kids develop at their own pace. There are timelines in which we usually expect things to happen, like crawling, walking, talking, etc. Some kids skip a phase entirely, for example, Julian barely crawled before learning to walk. A kid that talks in 3-word sentences at 2 1/2 may have walked at 10 months old. It’s hard to tell when these milestones may occur.

Sometimes, kids hit milestones later than they should. This is due to a lot of factors- prematurity, lack of time with parent/caregiver helping them learn things, etc. I’ve also learned that sometimes delays happen for no reason at all. Lily has done things on her own time since the womb.

She wanted out at 31 weeks, but my OB stepped in and stopped her. The day after I reached 37 weeks, Lily had had enough and she was born later that day. Being three weeks early, she weighed in at 5 lbs, 12 oz, the smallest of my kids. I could pick her up with one hand for a month (not that I did). She wore preemie clothes for a couple of months. In 2008, preemie diapers were a pain to find and I was delighted when she finally grew out of them.

She has always been a great sleeper. As a baby, we could barely hear her crying because she was so quiet.Twelve years later, you can definitely hear her if she cries and she loves to sleep.Lily was a small baby and everyone loved cuddling and playing with her. Her brothers actually fought over who got to put her bottles in the sink to be washed. (They were 3 and 1 1/2 at the time.) It took some time before I realized that she wasn’t reaching her milestones.

I mentioned to her pediatrician at a checkup that I was worried because she wasn’t crawling, pointing to things she wanted and a few other things. I was given a phone number for an Early Intervention program, known locally as First Steps, and advised to schedule an evaluation.

The evaluation was the day before her first birthday. It broke my heart watching her struggle to do things she should have been able to do or at least try. As soon as the evaluator left, I burst into tears and cried through the next day. I knew something was wrong.

Lily turned one and started First Steps almost immediately after. She had physical, speech and occupational delays. This is also referred to as “global” delays. In her case, it was hard to tell what caused these delays. She wasn’t born early enough for that to be an issue. I took care of myself the best I could throughout the pregnancy- I worked full time and chased the boys around. After going into labor at 31 weeks, I basically sat and did nothing as my OB recommended, including going on light duty at work. I didn’t drink, do drugs or anything that could have harmed her. I was at a loss.

Lily had great therapists- I am still Facebook friends with Denise, her speech therapist. Denise was the only therapist that stayed the whole two years because Lily needed extensive speech therapy. The other two therapies lasted for about 6 months (physical) and a year (occupational). When she got to preschool, her teachers asked if she had ever recieved speech therapy because she talked so well. I explained that she did and that Denise did a great job.

It wasn’t all sunshine and rainbows- Lily would throw herself on the floor because she was frustrated trying to talk. She hated the sensory suitcase that the OT brought to see what textures she could and couldn’t tolerate. When learning to run, she ran into her open bedroom door, cutting her forehead. There’s a scar, but she doesn’t remember how it got there!

Of course, during all this, Julian started showing behaviors that would later lead to his diagnosis. It was a rough time for all five of us and it almost led to the end of my marriage. I’m glad that I was able to get Lily what she needed. She is still seeing a dietician and will be starting OT again very soon, whenever the world opens up.

What Do I Do? How can I find help for my child?

As I said earlier, I talked to Lily’s pediatrician at a checkup, but you can call or email your child’s pediatrician whenever you think is necessary for this issue. Some pediatricians may take a “wait and see” approach but if you think it’s more serious, don’t be afraid to push for your baby to be seen.

Most, if not all states have programs that provide early intervention services to kids ages birth-three. The program in Louisville is First Steps. There’s an evaluation and a meeting afterward to discuss what may or may not be needed. If you don’t like the therapist you get, it’s easy to change. At three, your child is no longer able to receive these services and will be evaluated to see if they need to go to Head Start for more therapies or if they can be discharged and go to preschool.

Lily was evaluated a month before her third birthday and she aged out. She went to preschool that August.

I will say this as a mom who has been there: DO NOT BLAME YOURSELF. I did this for a long time, even after I knew that Lily’s delays were global and there wasn’t a reason for them. Just remember that you are doing the best you can, which is what really matters.

So what ARE the benefits?

  1. Obviously, getting early intervention services can help your child not get further behind in their development than they already may be. If you elect to not get services at all, this may mean a lifetime of difficulties for your child. There is no shame in getting your child assistance. It’s most effective when done early. Had I waited longer to get Lily into First Steps, or not done it at all, she would still be struggling with her speech. I just wish I had picked therapies back up a little earlier than I did.
  2. The therapist(s) come to you. This Discusses the legal requirement of the IDEA (Individuals with Disabilities Education Act) of therapists coming into a child’s natural environment as much as possible. Children learn better when in a familiar place.
  3. You are involved in the team that works with your child. You get to say what services you do and do not want your child to receive.
  4. Therapists and others working with your child can help you get other services, should you need them.
  5. Your child can improve their skills at their pace and not feel rushed. The therapists can model what you may need to do between sessions.

There is something great about watching your child learn and grow through their therapies. Your child may need extra help, and this is okay. Your child will be better off having had early intervention.

Looking At the Bright Side

A Dark Day Brings Light

November 23, 2011, was a dark day at my house, but yet it brought a lot of light to my mind. That is the day Julian was diagnosed with ADHD (combined) and traits of Asperger’s Syndrome. (This was later amended to a full diagnosis and he is now considered to be on the autism spectrum because Asperger’s was removed from the DSM-V.)

Autism meme

It brought tears and peace at the same time. I finally had answers to so many questions. I wasn’t a bad mom, there was actually a reason he was doing all these things.

I finally had tools to help him. I could help him calm himself so he wouldn’t throw toys, hit his siblings or myself. I might even get dinner done on time some nights instead of stopping to deal with Julian’s meltdowns.

Losing Perspective

Somewhere in the middle of trying behavior charts, evaluations and basically bribing Julian to act appropriately, I’d forgotten the good things about him. He did have those, like every other kid.

Don't say sorry

For example, Julian is so intelligent. For the most part, he’s always done well in math and science. He hates reading.

There is a bright side to having a kid with special needs. It changes you in ways you never thought possible. You may have learn a lot about the diagnosis (or more than one), but you’ll be able to spread awareness about it. I’ve become very vocal about ADHD and autism.

You can read my thoughts on the vaccination/autism debate in this post:

The Autism/Vaccine Debate

I’ve walked for a local organization for families of children with autism. I worked with kids with autism for almost five years, and I loved it. It makes it easier for me to deal with the struggles.

I know I’m far from alone because there are many families that have the same day to day issues that I do. This includes some of my friends.
I’ve learned that you have to be a different parent for each kid.

What works for Lily may not work for Julian. Cameron responds a lot differently to things than his siblings. We have had to adjust to Julian’s quirks and needs and become a lot more creative and open-minded. I’ve had to think on my feet a lot and outside the box a lot more.

Learning to Adjust

I never really went through the stage that some parents do in which they grieve what they imagined what their child would be able to do. Julian will still have a full life- he will just have a few bumps along the way.

Swing
We are able to see the world through a different lens with Julian- slightly narrowed thinking, a dry sense of humor, ability to help with or without asking- he loves to help his dad and grandfather do “big guy stuff”. He does show emotions, but we are still working on empathy.

I have become tougher. I don’t see this as a terrible thing. I’ve learned to fight for what Julian needs and I will do that until he can do it on his own. I won’t let him be in the world on his own without knowing how to get help if he needs it and without the skills, he needs to navigate his issues.

We do have bad days as parents, with or without special needs kids. Looking at the bright side can help bring our focus back to the positivity around us- our kids.

Top Reasons Behind Eloping

There are many terrifying moments in parenting. I’ve seen a few- when you realize your child has a broken bone, all three kids get strep throat, and my personal nightmare: a child eloping.

Eloping is defined as :(according to Oxford Dictionary) sneaking off, slipping away

It’s most commonly seen in children with autism and can become dangerous if safeguards aren’t put in place. Even with those safeguards, things still happen, but all we can do is our best, right?

My biggest tip is, as always, know your kid. Each child is different, meaning triggers for eloping and other potentially dangerous behaviors. Some kids run because they are simply curious about something they see. (This was Julian’s issue.) Some run to escape a demand or request to do something they don’t want to. I saw this a lot while working with kids with autism. It may even be a combination of both.

From a personal perspective, this can get pretty scary. Julian developed this issue when he was much smaller and thankfully no longer does it. He would run off after a bird or something else he saw BUT didn’t see the car backing out of a space, almost hitting him. This happened twice before I started having a very tight grip on his little hand in parking lots.

Another tip is: have a plan. If you read A Parent’s Guide for Wandering and Missing Children you can find ways to plan for one of the biggest parenting nightmares. There are links to other helpful sites.

Once you have a plan, it’s time to think of why kids elope.

boy running during sunset

Photo by jonas mohamadi on Pexels.com

Running Into Trouble

The main reasons for eloping, according to CDC

1. Wanting to get to something they want or find interesting- this can get really bad pretty fast, especially if your child is drawn to ponds, lakes and other sources of water. A situation can deteriorate if they are drawn to other things: moving cars, an animal, or just about anything that a child sees that draws their attention.

2. Wanting to escape something they don’t like/want to do. I’ve seen this a lot in my career- during ABA therapy, quite a few patients ran off because they didn’t want to try what they were being encouraged to do. Some kids ran, for example, because they didn’t want to eat what was being offered at meals.

3. To get out of a stressful situation- many kids with autism and/or sensory issues do not do well in loud and/or bright situations. They may run to get away from what is bothering them.

There isn’t really one best way to prevent eloping, I think it relies on a few different factors. 

  • Knowing your child’s triggers (if they have them) can help. If you know that your child is not a fan of loud noises, try to prepare your child before going into this kind of situation- we went to a local parade once and at the very end, there was a loud fire truck siren and Julian became very upset. We didn’t know that was coming and we gathered our things and left. About a month later, he went to a Monster Truck event and took headphones to block the noise. He actually fell asleep during the show!

This can be as simple as saying: “We are going to see Monster Trucks, they will be pretty loud. If it bothers you, please tell an adult.”

  • Let your child know (depending on their level of understanding) that running away from adults is very unsafe, but don’t terrify them with details of what can happen to them. This can create anxiety.
  • If your child is able to let themselves out of the home or other areas, it may be time to consider strong locks and an alarm if needed. This can save your child’s life.
  • If you can, try taking another adult with you on certain outings. This can decrease the chance of an elopement by having another set of eyes and feet, if needed.

I don’t have all the answers, but those are the tips I do have to prevent a potential tragedy.

light sunset people water

Photo by Negative Space on Pexels.com

 

Photos courtesy of Pexels

 

Five Ways to Avoid Holiday Meltdowns

Meltdowns are not a fun event, no matter what day of the year it is. Most of the time, they can be avoided, but sometimes, it’s entirely out of our control. To learn more about meltdowns, you can read The Truth About Shutdowns and Meltdowns

Give thanks

Bringing Down The Stress

The holiday season can be a stressful time- starting with Halloween and ending at New Year’s Eve. This can depend on which holidays your family celebrates- some families don’t celebrate anything at all, some celebrate everything.

Isn’t that neat? My family celebrates Thanksgiving, Christmas, and Chanukah. My mother is Jewish, so we go to her house every year to have some fun over the eight nights. It’s fun but can get a bit tiring, so we go at our own speed.

Things can be a bit more stressful if you run into family members that don’t understand your child’s special needs- especially if they don’t want to. There is a difference between not knowing and not wanting to know. This topic is a bit more detailed in Helping Your Family Understand Your Child’s Special Needs

Overall, there are ways to help your family get through the holiday season in a way that everyone can remember fondly.

Upset child

Five Golden Rings…I Mean, Tips

  1. Avoid places with crowds, loud noises, etc. Many kids with special needs do not like the line to see Santa. It’s loud, bright, and if you’re Julian, there are germs everywhere. Some kids do not do well in crowds, because it’s too cramped, things move too fast, and sensory issues can be caused by very small things that we are not aware of. Some places are becoming more aware of this and are offering sensory-friendly gatherings, so look around in your area.
  2. Be flexible. This is most likely the most important tip. Flexibility is a requirement in parenting, but in this case, there’s more of a need. Things can change in a second with our special needs kids, and this is okay. Things can become just too much for them, and they need the ability to find a quiet spot to calm down in or leave entirely. Bring two adults to events so that one can stay with the other children, bring adaptive equipment, etc.
  3. Watch out for wandering. This can occur when a child needs to escape quickly from a situation they do not want to be in- a loud party, for example. Keep an extra-close eye on your child near doors and other routes away from your location.
  4. Keep up your routine. Most kids are on a break for a week before and after Christmas. It’s important to keep up a daily routine- eating and sleeping as close to usual times as you can. Kids do better when they know what is going on. It keeps their anxiety low and they are less likely to get off-track with behaviors.
  5. Take a break if you need it. If things get to be too much for you and/or your child, it may be time for a break. Don’t go to the next party. Don’t worry about the next celebration. Stay home, watch a movie and snuggle up with your family. This can be more fun than going out and potentially creating more stress.

Christmas gifts

The holiday season is upon us, the weather is getting colder. Let’s make great memories with our families.

What tips do you have to prevent meltdowns with your kids?

Photos courtesy of Unsplash

Information from CBS

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