It Takes a Village to Support Our Kids

I’ve had a handful of moms that look up to me because I’ve been through the hard early years of autism. Julian is older than their kids (except one) and I just see it as sharing my experiences so that they don’t struggle like I did.

Plus, its easier to get services these days because there are more providers, even if you’re on a waiting list. Julian sat on one for months just to get an evaluation. Back in 2011, there were only a few good providers in Louisville for ADHD and autism. I’m glad to see this. It also means more families are seeking help for their children earlier.

I haven’t been the perfect mom. I’ve messed up a LOT. The thing is, I’m okay with admitting it. I don’t think I have been asked one particular question more than others. I just try to help the most I can and if I don’t know, I’ll find resources.

Parenting a kid (or kids) with any kind of special needs is hard. I may make it seem effortless, but it isn’t. I still get frustrated, I still need to vent about things because some issues are a lot for me to deal with. I’m glad to have passed through the hardest years, but the kids aren’t adults yet. That will be a whole new adventure.

If you’re out there and you need support, please reach out. Support is a good thing. There’s groups all over the internet. I have a great support system and I’m forever grateful.

I built my village back in 2010 and added a few people along the way. Everyone should have a parenting village.

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It Feels So Heavy

I wonder sometimes how I continue to get out of bed everyday.

If it weren’t for Prozac, the kids and my job, I’m not sure that I would be able to.

I woke up this morning feeling like an elephant was sitting on my chest. I fell asleep last night with the same feeling.

Anxiety creeps in when you don’t expect or want it.

Not Sure Where I’m Going With This

Dyspraxia is a neurological issue in which your body doesn’t always get the messages that your brain is sending. It leads to problems with motor planning, which leads to many kinds of issues for kids.

Lily’s issues are with motor planning, which explains why she took so long learning how to ride a bike and does not like most physical activities. There’s also issues with speech but clearly that’s not an issue. Speech therapy paid off.

One of the biggest parts that bother me about this is that it’s a developmental disorder, a major criteria is premature birth and delays as a baby/toddler.

For those of you late to the story, Lily was born at 37 weeks and 1 day- barely. I went into labor twice before she was born, at 31 weeks and three days before she was born. It was a complicated pregnancy.

In 2008, full term was considered to be 37 weeks and beyond. In 2020, Lily would be a late preemie, since anything short of 40 weeks is considered premature.

Lily had multiple delays and here we are 12 years later, again facing an uncertain path.

Luckily, I have a lot of friends on Facebook. I talked to two of them about this. One is another mom and the other is a former coworker who was diagnosed last year as an adult.

It turns out Lily and the other girl are a lot alike and if we didn’t live an hour apart, we would probably get them together. It felt great to have someone to talk to who gets it.

We talked about school, personalities and adulthood. One of my biggest worries is that Lily won’t be able to live independently as an adult. I may end up going for guardianship. (I may do this for Julian, but that remains to be seen.) I was so glad to talk to her.

The former coworker told me that her parents didn’t quite get her issues when she was a kid. She was also bullied in school because of her physical difficulties, as in gym class. I hated to hear that.

I’m not 100% sure on what to do, I can do my best, right?

I emailed Lily’s pediatrician to get a referral to get a neurological evaluation. I think that would be a hugely helpful step. Ironically, the place I asked for is part of the neurology practice Cameron and I go to for migraines.

She’s staying in OT as long as her insurance covers it. She’s doing well and enjoys her sessions. I laugh at this because when she was a toddler, she would completely lose it when the OT had her do certain tasks. The irony is not lost here.

Whenever school opens, I’m going to request a meeting with her teachers so they can give me input for the neurological evaluation.

There are things that Lily can do at home to help her skills, for example, applying makeup can help with fine motor skills. I have time and eyeshadow that I don’t use. Bam.

Most of all, I will need to work more on my patience with Lily. This is a hard one sometimes but definitely worth doing. There will be good and bad days. We just have to keep trying.

There’s a Threenager Online

Welcome to year THREE of ShortstackBlogs!

I have three teens (or almost) so I figured the title would be fitting.

It’s been a weird year so far and here we are in August. I’m almost afraid to see what happens next.

Three years ago, my very first post came out. Thankfully, my writing has improved greatly since then. I’ve written about many topics in parenting and mental health, some were hard to write. The book reviews have also been fun, and I may bring back a version of Song Lyric Saturday.

I started this blog two years after one of the biggest losses of my life and I can only hope that my posts have helped someone get any kind of help they need. That’s the main mission of this blog, because I don’t want anyone else to grieve like I did.

I’ve had to change my writing schedule several times due to thyroid surgery, flares, and jobs. I even took a break for a month last year. September is a hard month for me, I may do the same this year.

Physically, I’m doing okay. I’ll be seeing my rheumatologist soon. I’ve got three years and seven months sober…yay!

Emotionally, I am so glad that Prozac exists. Without it, I’m not sure I would be functional. I sweat a lot as a side effect, but I can live with that. I’m still in therapy.

Boys at a trampoline park for Julian’s 14th birthday..no worries, we were safe

Kids are doing okay. Lily really struggled at first with social distancing, but has been doing better. Julian is not happy about starting high school online but he understands this is way out of my control. He’s not a fan of masks, but he wears one. Cameron is enjoying his sleep.

Besides working, I’ve been doing craft stuff, watching a lot of Netflix, taking Lily to appointments with her dietician and OT, and some other things.

Lily getting a medal for completing her bike class 👏👏👏

All I can do is my best, right?

I’ve enjoyed watching this blog grow along with my kids.

Stay safe, healthy and keep reading!

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.