Surviving the life of a "High Needs" child & parent.

On The Move & Social Media

After finding out that Habanero’s diagnosis I joined a Facebook group of people who are also challenged by Sensory Processing Disorder. It’s been really great to see some of the questions on the group – believe it or not there are actually over 78,000 members. So posts move pretty quick; some days it’s not much I can relate to and others having me laughing or crying at the relate-ability. Today was one of those days; a mom posted about how she is exhausted that her two and half year old won’t stop moving. He’s a seeker just like the Habanero, and she was writing because she wanted some confirmation that she isn’t crazy to get upset when people say things like “he’s being two” and “he’s all boy”. Since when did being an exhausting, constantly moving… sometimes P.I.T.A become expected because of gender? This really irritates me.

Having a seeking temperament for us too means that our son is constantly moving, constantly getting into something – and always restless. Though many would claim this is pretty typical age appropriate behavior for us it is more extreme. On any given day you will find our child climbing a ladder, ripping the curtain rods out of the wall, drawing all over the house and throwing trash everywhere because he’s looking for stimulation. It is exhausting and particularly more difficult to handle when you are alone and have a second child to look after. I’m pretty sure if I were a stay at home mom I’d go crazy.

I think the average parent gets a good taste of some of what I am talking about when their kids are out of school for the summer, but multiply that. I enjoy spending time with my children but having to constantly stay on guard and one step ahead is really tiresome. Even a simple task like walking through a parking lot into a store or an appointment becomes a chore to keep my child focused enough on the task at hand to complete it. It’s a daily struggle of constant distraction and frequent mood swings.

Recently I decided to share my son’s diagnosis with my family on social media – after making my first blog post here. I am not quite sure what I was expecting, I guess you could say I wasn’t expecting anything but I wanted to raise awareness for this disorder that seems so overlooked. So I posted an image of brain activity in a person with SPD compared to Autism. So many people have heard of Autism but no one really knows what SPD is when I mention it. I thought it would be a good first post. I got all of 3 responses from my HUGE friends list of 130. 3. That’s it. I get more “oh how cute” when I post pictures of my kids.

I’m not quite sure what to think about the lack of response from my Facebook friends – as they are mostly family members. I would say probably 100 of my 130 are all family because I don’t like to randomly add those that I hardly know. I wasn’t really looking for sympathy or encouragement or even really any understanding. Just a response. Just an acknowledgement that I’m struggling with something out of the norm. I got mostly nothing…

Even questions would have been welcomed. One family member commented on my post. I guess it’s good to know that at least 1 in 130 cares! *SIGH*

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SPD Profile: Seeker

When you are a first time parent you often wonder if you can really be instinctually correct and you tend to write childhood behaviors off as “normal” because well you don’t really have much to compare them to from the perspective of a parent anyways. I’ve had a lot of experience working with kids – and as I may have mentioned in the past I took several Early Childhood Development courses at the local community college toward a certificate.

I can’t say I really learned anything in that program about SPD because it was really never mentioned. I’d heard of Autism because of media attention that it has recently been getting but never SPD. So when the Habanero’s teacher at his pre-school did a “evaluation” of him at about 2 and half I didn’t think much of it. I’ve done every ASQ for the pediatrician and never had any concerns. What were these teachers going to find that was out of the norm? Nothing; I thought my boy is pretty typical.

Then my husband had a review of my son’s eval with the teacher and said they specifically mentioned him covering his ears in protest when other kids are singing and dancing in class. I thought huh that’s weird maybe he’s just being a grumpy pants so I started paying more attention to my son’s quirks and I quickly realized he was covering his ears at home too at normal household noises like the sound of running water or frying bacon. These things weren’t loud but to him they were incredibly disruptive.

When he was a baby the Habanero got pretty upset at the 4th of July when my husband set off some fairly tame fireworks and we thought maybe he was just startled by the unexpected noise. He has shown a significant intolerance for noises since very early on and I felt horrible that I never really noticed it or thought much of it.

And there were other things like the fact that my oldest son is still in our bed and can’t seem to fall asleep without the TV on or playing with my hair. The fact that he likes to lick us – which we thought maybe was just a kid thing. He doesn’t seem to show much reaction to incredibly sour foods. He is constantly moving.

We couldn’t go out to restaurants without help because he’d spend the entire time terrorizing the place. It’s not that he wasn’t well behaved for the most part it was more that he would be constantly interrupting others trying to enjoy their meal by touching their leg or be staring at them. In the end the biggest flag that went unrecognized was his clumsiness. It’s hard to call a toddler clumsy – really they are just getting better at walking and running. Our boy has a constant line of bruises on his chins. We thought it might be related to his club foot – maybe his feet were regressing and it was tripping him up so we wrote it off. As it turns out it’s actually a proprioception issue.

So we had our son evaluated by a professional and fortunately there are several clinics in the area to choose from but not many specializing in treatment of kids his age. Apparently SPD is more common with older children since the clinics seem to revolve their availability around them which is pretty frustrating for a parent trying to balance a full time job and therapy.

In any case… yet another hurdle to overcome presents itself. Challenge accepted.

*End Hiatus*

Annnnd I’m back! Wow it’s been so long since I last posted there was a software update to WordPress and now I don’t know where anything is or even remember what my last post was about. Things have gotten a little hectic at home with a 7 month old and the Habanero inching toward the big #3.

I’ll just summarize a recap of last NEARLY YEAR that it’s been since I last posted:

The Good:

Baby #2 (Mr. Bean) arrived late deciding to wait until the full 42 weeks to still show no signs of wanting to come out. I took maternity leave and nearly lost my job because my contract was ending. I seriously considered being a stay at home mom when my daycare expenses tripled due to the loss of care from the military childcare that my child was enrolled in. Miraculously both myself and my husband managed to get promotions along with raises; good thing I didn’t quit working! We bought a recreational property in Wyoming and an old 5th wheel to “vacation” to since there isn’t much in the way of our vacationing future with two little ones in the picture. The Habanero was diagnosed with Sensory Processing Disorder (more on that later…)

The Bad:

We had to euthanize our cat due to multiple health issues; she had contracted breast cancer to go along with her thyroid issues and her arthritis. For a while we had two room mates renting at our house and we lost both those in the early Spring which was a significant change in our financial situation (right before I lost my job and Mr. Bean arrived) talk about being scared about making ends meet!

That pretty much brings us to the present of me seriously contemplating whether another child is in our future or not. All this brings me back home to my blog. It isn’t that I haven’t had anything interesting to write about certainly but you know how things go. So here I am again – and here we go!

 

Casting, Norovirus & Dehydration

November and December were rough and as a family we are so glad to put 2016 behind us. We completed 3 castings in a month to get the Habanero’s intoeing on his right foot corrected during December. The compromise for us and our doctor was to have plaster casts wrapped in fiber; by the time the lil man finished his last set he was walking around with full leg casts on. They didn’t slow him down a bit!

What did slow us down was all the illnesses we ended up with between Thanksgiving and Christmas. Every week it was something new, Roseola, Ear Infections, Fevers, Pink Eye (twice) and finally the week of Christmas and the last week of casting the Norovirus. Let me tell you what a great pleasure it is to have a child that won’t stop vomiting in casts. You can’t bathe them – so you end up with a kid that smells like puke that wants to be held all day and all night.

Norovirus, if you’ve never had it or heard of it – is a stomach bug that can last anywhere from 24 hours to 3 days (for most) in which you pretty much spend the entire time with stomach cramps and/or vomitting with unrelenting diarrhea. My husband was nice enough to bring it home from work and I got it and so did the Habanero despite our best efforts to prevent it’s spreading. Nothing works for over the counter medication to stop the symptoms… or at least it didn’t for us. We ended up in Urgent Care the night before we were supposed to get the Habanero’s casts removed with a dehydrated and withering baby. He was so dehydrated (even though we had been actively trying to prevent it) that they couldn’t find any place to put an IV in after 3 failed attempts.

How did we know the lil man was dehydrated? He would cry and have no tears and was uncharacteristically lethargic. It was scary to see him in such bad shape and as a parent nothing is worse than feeling so helpless. After a dosage of Zofran, the Habanero was finally able to keep down a little bit of water and pedialyte. We spent the next 3 hours at the Children’s Hospital squirting water into his mouth with a syringe every 5 minutes until he finally perked up and started to act normal again.

All this was very frustrating as you can imagine, especially because I had been harassing my husband to keep an eye out for dehydration symptoms and had even called the pediatrician concerned the morning that we ended up going to the ER but was told to call back the next day if the Habanero still had a fever. Needless to say, I spent my weekends making up work hours and even worked Thanksgiving because I had run out of sick time for the year and had no other options for staying home with my sick child. We have started out January with Bronchiolitis, Pneumonia and Pink Eye.

Had I the chance to go back in time I could say I would want to change history to not have experienced all this, but in retrospect I find gratefulness. This illness, (probably the only real major one that we experienced as a family so far) really made me appreciate everything we have so much more. It also put a spot light on what a fighter the Habanero is.

Even when this kid couldn’t keep down less than an ounce of water he still kept trying to drink and eat. He was desperate in his search for water – at one point we found him drinking out of the dog water. It was disheartening for us as parents to not really know what to do. The only thing we could do for him without consequence was to wet a paper towel and let him suck the water out of it so that he could keep it down. He would have drank from a fire hydrant if you let him but even in a state of dehydrated lethargy he found the energy to fight for what he wanted. He got really mad anytime he saw water and was not allowed to have it and threw a tantrum like you’ve never seen. It probably sounds odd that I would be grateful for such desperation, but I don’t really know how to explain it so that it makes any sense.

No parent wants to see their child suffer, but in the times throughout their life that you get a glimpse of how your child deals with a tough situation you can’t help but be proud of their stubbornness, fortitude and passion. After all the club foot treatment, you’d think that I would have already seen this ability to overcome adversity in my child but this opportunity really awakened me.

Casting Correction for Club Foot

At 18 months we are going into casts again. Now that the Habanero has been walking it makes this session particularly difficult. It’s so hard to see the little guy crawling again but I think it bothers us more than him. We recently decided to see a new doctor who is a little further away from home rather than just going to the local Children’s Hospital for treatment. I feel like we were getting over charged for our visits to the Children’s doctor – $350 a visit WITH insurance. We really liked our PA, but the fact that it took a month and half to get an appointment to see the doctor each time we finished a casting session (3-6 casts for us) was pretty frustrating. This treatment session is due to the little man’s right foot intoeing, he’s been tripping over it quite a bit.

So we decided to start casting with a new doctor and so far it’s had it’s own points of frustration. The first session was only supposed to take a half an hour but it took an hour. It’s a hour and half drive from our home, so it pretty much shoots an entire day for one treatment. You can imagine when you are casting every 10 days (and trying to work full time) it’s quite a time commitment.

The Children’s Hospital used fiberglass casts which were pretty rough in texture so they scratched up everything but at least we got to pick a color. The padding used around the edges for this type of cast was much preferred for us; it didn’t come out and it didn’t fall apart. The little man was casted from his upper thigh all the way down his leg with his knee bent and foot abducted. The fiberglass casts were much smaller than the plaster. The only problem we had was that with our last session our little Habanero figured out how to wiggle his legs out of them several times. These sessions costs us about $150 out of pocket with our insurance.

This new doctor does plaster casts. Same length of the cast, but there is no additional padding other than some cotton and fabric to the inside of the cast which means that when our little guy started to move around on day 2, he also got some nice red line rub marks on his groin from the cast chaffing his legs.

I tried to relieve the rubbing by adding some foam weather stripping to the top of his plaster casts which seems to be helping but doesn’t stay on very well. After 3 days of wearing the plaster they were pretty much starting to break down not only on his knees but in the ankle area because of all the movement. With his crawling the plaster was flaking off everywhere and it’s all over the bed and carpet. And the fabric used as part of the cast is coming off too, so I had to duct tape his knees to prevent it from completely breaking down. I can’t really speak to the costs of the plaster versus the fiberglass yet because I haven’t gotten the bill.

One of my biggest gripes with the plaster though besides its weakness for a crawler and the messiness is the size of the casts. The plaster is much bigger and thicker than the fiberglass and so finding pants and socks to put over them really sucks. Two sizes up sweatpants are the only thing I can find to fit, and they must be loose leg. As for socks we are wearing some of dad’s old ankle socks. It’s actually kind of difficult to find sweatpants with elastic on the ankle these days I guess they are out of style now.

Finally, we were told that it would reduce our appointment times for the plaster if we removed the casts ourselves with a little soak in some warm water and vinegar. This is different than the Children’s Hospital; there the cast was removed by the PA and then we were given the opportunity to bath our little guy before the new cast was done. So now we are expected to remove the cast and make sure the bathing is done before we go to our appointment. Well I’m already waking up at 6 AM to go to our morning appointments for this new doctor and he says he wants the casts on until an hour before his appointment which means I’ll probably have to wake up at 4 AM just to get that all taken care of the day of.

Needless to say… something has got to give and I’ll be making some changes to the treatment plan this week because I just can’t see doing this for another month or two. I’m going to try and get the Habanero casted at the Children’s Hospital and only go up to the other doctor for evaluation. With the holidays and preparations for a new baby underway I just don’t think I can physically do it all, but I know that staying on top of treatment is important so we’ll have to compromise something. The new doctor told us that we could be doing casting on and off potentially until age 4 if we don’t get very strict about using our boots and bar at night, so that’s another challenge we’ll have to overcome in the near future.

High Needs or SPD? Or Both?

A while back I posted about some concern I was having that the little man might have some symptoms of Sensory Processing Disorder. Because he has been hitting all his development milestones according to the doctor and daycare I haven’t really though much of it again. Now with the way things have been going I’m starting to wonder again if it could be an issue for us.

I stumbled on an article on the Fussy Baby Site recently and it’s got me thinking again. It’s good to know that I’m not the only parent considering this about their high needs child.  In any event, through the article listed above I intend to actually follow up this time on investigating the Habanero’s Sensory Profile.

We are still struggling with getting him to “sleep through the night” at over year and a half and according to our doctor by 18 months we should no longer be doing night time bottles. This goal seems somewhat more attainable that it has in months past but still somewhat of a challenge. I have noticed that the little man doesn’t like to eat when we are in a public place for dinner he is so easily distracted by all the goings on around him. I’m not really sure if this normal kid behavior since I’m a first time parent or if it’s a personality thing.

My husband has been claiming for a while now that he thinks my son has ADHD and from what I saw in the article it looks like we aren’t the only parents with this concern. So I guess what I’m saying is, if you suspect you have a high needs child that these are other concerns you might also want to familiarize yourself with or be aware of the symptoms. Obviously not all children who are high needs might have additional challenges such as these but I think we owe it to ourselves and them to at least be aware. Here are some of the symptoms for SPD listed in this article:

  • Difficulty falling and remaining asleep without external soothing.
  • Trouble latching on to breastfeed.
  • Tantrums and crying that are more intense and last longer than they do for most babies and toddlers.
  • Especially clingy and difficulty self-soothing or being soothed by someone other than the primary caregiver.
  • Very picky about how he or she is held.
  • Very high or very low pain threshold.
  • Constantly on the move.
  • Clumsy, uncoordinated, drops items often.
  • Trouble shifting focus from one activity to the next or one toy to the next.
  • Doesn’t like rocking at all OR wants to rock all the time.
  • Very distressed or even nauseated by swinging OR won’t come out of the baby swing without wailing because she loves swinging so much.
  • Very sensitive to certain sounds, too much light or a certain quality of light, temperature, sights including certain colors or a busy visual field, a lot of sounds at once such as people singing in unison, being touched unexpectedly, pressure against the skin (in other words, a light touch may be very distressing compared to a heavy touch, temperature, clothing fabrics, and so on). Think extreme responses to everyday sensations.
  • Constantly sensory seeking—touching, tasting, etc.—more so than most babies and toddlers. For example, the baby might enjoy sucking on a lemon!
  • Upset by having to transition from one sensory environment to another, such as from a warm room to a cool one.
  • Eating difficulties, such as transitioning to solid foods, keeping the food together to chew it and swallow it effectively.
  • Excessive drooling.
  • Slow to toilet train.

Stretching for Club Foot

We struggle with stretching the Habanero regularly, mostly because when we try to do it he fights us and refuses to relax his feet enough for us to be effective. The doctor recommended we do it at diaper changes, which would be nice and regular but we’ve got a kid that hates to be laid down for a diaper change so most of the time he’s trying to figure out how he can sit up and crawl away. Man, I sure sound like I’m full of excuses don’t I?

We have an appointment scheduled to see one of the top docs in our state for Pediatric Club Foot treatment coming up, and I’m interested to hear what he has to say. For now, I thought it would be helpful to share (and remind myself) of the stretches we are supposed to be doing daily with our little man. We’ve noticed one of his feet seems to turn in a little more than the other and since he’s started walking he stumbles often and gets tripped up by his own feet. Hopefully if we can get into a more regular routine with these he will not have these issues.

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