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.

No Rest for This Mom

In light of recent events, I’ve been thinking a lot.

I have two black sons. One has autism and even though he’s verbal, I still worry.

What happens if he gets pulled over? Will he react appropriately or will he act in a way that might get him killed?

Julian’s not a huge fan of rules, so this is one of my biggest worries. I don’t know how he may respond. There’s a few factors- is the police officer being kind or combative? Do they understand that my son doesn’t do eye contact well? Can they keep their composure should Julian react in a bad way?

When I say “in a bad way”, I mean being rude, argumentative, or even aggressive. I would love to think he would just be nervous, as many of us would, but I know that may not be what happens.

This may be three years away but I think ahead.

I plan on talking to both my boys about what to do if you’re pulled over. It’s a talk that I didn’t think would need to happen, but here we are. If it’s something that may mean the difference between my son coming home safe and me having to bury him, I will talk like there’s no tomorrow.

I watched some of the coverage from Minneapolis and it reminded me so much of the LA Riots. I was 10 when that occurred. I don’t remember anything from watching it unfold, but I’ve since learned about it.

Cameron would likely be nervous but I think he would comply. I still worry, because he’s a soft-spoken young man. He may ” look” white, but his hair and eyes say different. All three of my kids got my brown eyes and curly dark brown hair. (Mine is black, so the brown part is from Matthew.)

What about Lily? I have no idea when she would be able to drive because of various issues. I’m sure she would become very nervous and possibly cry. I worry about her too. Black women have been mistreated by the justice system, you just don’t hear about it as much.

My kids already know they “look” different, even in their own family. They’re the darkest kids on Matthew’s side and next to my mother, the lightest on mine. They have learned my reality of being stared at because of my skin tone. They’re not scared but they are aware.

My kids, however, have had it so much easier than I did growing up. That’s one thing I wanted so badly for them. I didn’t want them to be the only biracial kid in their class, one of a few in their grade. It’s basically the opposite for them.

Lily’s had friends whose families came from other countries. Cameron learned Spanish from a friend in middle school because he was born in Puerto Rico. They’ve been taught to accept people for who they are, not what they look like. They don’t even think of not being able to play at a friend’s house because they are biracial.

I did as a kid and it’s devastating. I was in the second grade and felt like something was wrong with me because I wasn’t black or white. My mom, being the badass that she’s always been, told me something along the lines of “that’s on them. You’re great the way you are.”

Both my boys can run pretty fast and well- we just watch Cameron closely. Julian is better at running and I hope he (or Cameron) never has to literally run for their lives.

I hurt for all the families that have lost someone to police violence. There’s no excuse for that, not should it be brushed off by the local government. Somehow this happens and riots can be a result. I’m not condoning the rioting, but sometimes people run out of better options.

The LA Riots started over anger after a period of police-related incidents, the most well known being the Rodney King case. Five days of rioting followed after not one of the four police officers involved in his beating were found guilty.

In case you haven’t realized it, I am proud to be black. All day and tomorrow, as Lil Wayne once said. I was raised in a home that celebrated blackness as much as possible. I can’t imagine being ashamed of this. I’ve raised my kids this way. It’s hard enough to be biracial without extra shame. I do realize that not everyone was raised this way and I feel awful for those who weren’t.

I chose to marry a white man. He’s who I love and want to share my life with. Some of the cousins on my dad’s side were mad and guess what? I don’t speak to them. One of Matthew’s uncles felt similarly and he wasn’t invited to the wedding. We haven’t seen him in years, both of these by Matthew’s choice. I wouldn’t dare force that.

My children are more than a hashtag. They are three different people that I am trying my best to guide to be good people. They are similar to millions of other kids- they just want to live.

Pics courtesy of pinterest

Another post on this topic: My Sons’ Future

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.

Autism: A Life Changer

Kids are wonderful. They will make laugh, cry, maybe question your whole life.

When your child receives a major diagnosis, it takes time to accept it. It takes time to move forward.

You can read about my coming to terms with Julian’s diagnosis here

There are so many varying thoughts and theories about autism. This makes for a lot of different ways that people with autism are treated, even by their own families.

I speak about that in another blog post, Family Acceptance

Everyone reacts differently to a diagnosis. Some of us are relieved (me), some are devastated and others become angry. It kind of depends on the road you took to the diagnosis.

Even if your child is verbal and able to take care of themselves, it doesn’t mean you worry less. Julian is a concrete thinker, struggles with empathy and isn’t the best at advocating for himself. I realize these things may hold him back in the future, and he’s a teenager now. He will be 14 in July, a fact that makes me sad.

I worry a lot about his future. I realize that I won’t always be there to get him what he needs or remind him that he hurt his sister’s feelings because his intended joke didn’t seem funny to her. I wonder how he will do living on his own.

But yet, I have faith in the kid. He’s very smart, analytical, and does great with managing his money. I have the feeling I will keep a close eye on him as long as I need to.

I’ve never met a parent that planned for their child to have autism, ADHD, or many other developmental disabilities. We just hope for the best. I’m not sure I would change Julian having autism because it’s part of who he is, but I would take away the struggles he’s had.

Adjusting to an autism diagnosis can be difficult. Changing your and your family’s life to meet your child’s extensive needs can be a lot- but it’s worth it. It may require outside help and this is okay. I struggled for a long time with this when Lily was a toddler in First Steps.

One of the best things you can do is research. It’s so helpful. Researching will help you gain insight into how to deal with behaviors, to remind yourself that none of this is your fault. You’ll be armed with information to answer questions from others.

Another good thing? Know your kid. If you know your child won’t touch certain foods or textures, you’re more likely to make adjustments with food, clothing, etc. This also helps during school meetings. Knowing your child will make things easier on everyone involved.

One of the more interesting things about raising a child with autism is that it changes how you see the world. By the time Julian was diagnosed, I had already been working with kids with autism for a couple years.

You look closer at the small things. You become a “mama bear”, ready to fight someone over your child’s needs. I’ve done this many times and it’s gotten great results. Julian knows that I always have his back. You learn to see the world in a different way- not everyone accepts or understands autism. This stinks but it’s very true.

Autism is a life changer, whether you’re the person that has it or you’re raising a kid. Everyday is different. Your road to parenting is a bit bumpy but not passable.

Surviving the Dumpster Fire

I have lost count of the days we have been staying “healthy at home” as Kentucky’s governor, Andy Beshear, has asked.

Mid-March, probably?

Very accurate.

At this point there’s only so much we can do as parents to contain our kids.

My kids just started NTI (Non-Traditional Instruction) yesterday. I was mentally prepared for a disaster but nobody had issues. Yayyyy!

I’m pretty easy going these days because it helps my stress and anxiety levels, which helps prevent migraines and to some extent, RA flares.

Speaking of which, I have a phone appointment with my rheumatologist in an hour or so. I have great news to tell her- the medication she gave me in January is working. More yayyyy!

Kids are going through a lot right now- they don’t know when they will see their friends again. They can call, text or Facetime but that only goes so far. Some kids going to middle or high school may not see some of their friends before they separate for different schools. They’re anxious- what happens next? Is someone I know going to get the coronavirus? When can we go out and do fun things again?

I’ve been trying to explain things as well as I can to my kids. I’m glad they are old enough to understand most things. We do fun stuff at home.

The boys have been pretty chill- Julian said since they aren’t at school he can’t really miss the events that the 8th grade won’t get to do.

Lily has been a bit sad because she misses her friends and teachers. She and Bella (my friend Sara’s daughter) face-timed yesterday and she says she feels much better.

It’s the least I can do. I don’t like seeing her so sad.

There’s a load of laundry sitting on my bed waiting to be folded. I’ll get to it.

Probably.

Some things never change.

Meme courtesy of Facebook