Guaranteed to cause more  fear than any horror movie! The mere presence of a comb anywhere within Brian’s visual field can elicit a major protest. The donning of a cape signals that the worst is yet to come and a pair of scissors on their final approach to commence the hair trim is unbearable. My husband and I sweat more profusely than any intense workout can ever provide during the actual process, requiring our own sensory decompression afterwards. Welcome to the Haircutting Wars, the most perplexing, sometimes heartbreaking, and often frustrating experience for Brian and ourselves. This sensory struggle has been ongoing since 2004, when Brian had his first official haircut in the barber shop at 15 months old. We weren’t too concerned back then and knew that it wasn’t unusual for little kids to dislike haircuts. We had seen other little ones going through the same turmoil simultaneously with Brian and figured that he would eventually  “outgrow” this issue. Almost 12 years later, and still not much has changed, only that Brian has become much bigger and stronger. A part of me sometimes wonders if Brian will ever be able to tolerate a haircut at all….

Both the school staff and the home therapists have been diligent in trying to desensitize Brian to the process, starting with the visual acceptance of the “tools of the trade”, pictured above, and currently having Brian touch a comb, raise it to his head, and comb a small section of hair with hand-over-hand help. Brian has 22 goals in his IEP for haircombing alone-talk about “splitting hairs”!  I never knew that a basic goal could be broken down into so many small steps. Both we and the staff continue to wrack our brains to find THE reward to use exclusively for hair-related goals only. So far, no luck. We continue to use food and music as rewards while we search and Brian certainly enjoys both. In the meantime,  Brian’s hair still needs cut, so what to do?

While it has never been perfect, it definitely was easier when Brian was smaller to get a haircut.  We would bring him to a local kids salon where the staff were great and understanding. We tried to distract Brian with a video, gold fish crackers, praise, etc., but inevitably Jim and I would have to hold him down while the stylist quickly cut the hair with scissors . I was always amazed how well  (and even!) Brian’s hair came out under these circumstances. But there came a time when Brian’s particular stylist told us that she could no longer cut his hair because he was getting too big and strong to handle. That was a sad day for us.

Then Brian’s school at that time took over and were able to cut his hair at the school salon!  What a gift! Six years of absolute bliss, why, I never even gave it a second thought! Sure, Brian was not thrilled about getting his hair cut, but the impression I received from the teachers was that he was at least tolerating the haircuts and that there was a lot of supportive staff there to help him through it. It seemed just fine, until he no longer attended that program. Brian ended up back where he was 6 years prior (or perhaps things had never really changed, but we will never know for sure). Now what to do? Desperate times call for desperate measures, so we contacted all of our reinforcements: the teacher, behaviorists, therapists, and developmental pediatrician. Each professional had their recommendations and we decided to do the following: have Brian take Xanax one hour prior to his hair appointment to see if this would reduce his high anxiety and simultaneously, trim his hair while he was asleep, especially if the salon experience was unsuccessful.

The results of both strategies were mixed , both with hopeful potential. The Xanax did calm Brian down a little bit, but not enough to get a full hair cut done. He was still very unhappy, but the stylist amazingly was able to trim one side of his head. I call that alone a gold star performance!
In the meantime, I have been going into Brian’s room a few hours after he falls asleep at night to trim the other side with manicure scissors. A hair stylist, I am NOT, only a Mom who wants to help her son and will do whatever it takes.

Brian’s specialist said that we can increase the Xanax a little more for the next salon visit to lessen the anxiety and I continue to hone my hair cutting skills, late in the evening, while little boy blue slumbers peacefully. I continue to be reminded of the courage that it takes for our special children to face not only life’s challenges, but even things as seemingly benign as a haircut. How ironic that Brian loves to shampoo and wash his own hair and would do that for hours if we let him! Ah, our often quirky, never boring special kids, who always keep us on our toes, pull on our heart strings, and motivate us to move mountains for them so that they can live their best lives. Raising a special needs child is a privilege that has given us great blessings, but it is not for the faint-hearted and is sometimes discouraging because of times like these. Life would definitely be a lot easier without haircut meltdowns! Hopefully, that will become a reality in the future, step by step, snip by snip….I’m sure Brian will let us know when he is ready! 🙂

Thanks for reading! 🙂

  

Variety is the spice of life and in Brian’s world, the various extracurricular activities that he is able to participate in has certainly enriched his life and ours ! It wasn’t always this way, in fact, there was a time when Brian would experience sensory meltdowns in public places on a regular basis, forcing us to often retreat back home. I remember one particular instance when Brian was just 2 years old and I had enrolled him in a toddler
music class. We had attempted to go 3 times, but the result was always the same sensory distress. On the way home from the third class, there was a torrential rainstorm and both Brian and I were crying. I could barely see through my own tears, let alone the windshield, because of the buckets of water that were falling from the sky. So much water everywhere, lol! I laugh now, but back then, the sadness I was feeling during that drive back home was overwhelming. There was also a deep down fear that we would never be able to participate in any social activities. I couldn’t imagine such a fate for Brian, or myself, as I’m an outgoing person and enjoy the company of others. Relationships with friends adds meaning and joy to our lives and I wanted Brian to experience that too. It really was a tough ride for a while! I had to keep the faith, especially during those early days and believe that over time and with practice, Brian would gradually learn to enjoy and engage in recreational activities. Very slowly, but surely, he has….

Over a decade later, Brian now participates in a number of recreational activities, thanks to  the generosity and dedication of several organizations who have a huge heart for our kids. These activities include: music therapy, swimming, and adapted recreational sports, such as volleyball, soccer, golf, karate, and T-Ball. There are  social outings, such as the New Jersey Shore Pirates Expeditions that  Brian participated in just last weekend with a New Jersey autism support group.There are also year round holiday parties, day and overnight camps,  surf camps, horseback riding, our town pool, and gatherings with other special needs families. We are truly so blessed to have access to multiple resources and social opportunities for our children. I think advocacy and disability awareness has increased exponentially over the past decade, resulting in such a positive outcome, though there is always more work that can be done to improve the lives of the disabled.

We continue to expose Brian to as many activities as we are able to, knowing it’s important for his overall development and our mental health. Brian’s default button would be to either watch the same programs on TV or play with the same apps on his i-pad.  He would be quite content in doing only these things if we didn’t push him to try other activities. There is always an adjustment or transition period with each new activity, but like the movie, “Ground Hog Day”,  we know a lot of repetition is required in order for Brian to be comfortable. It’s predictable and Brian’s sensory challenges in this regard have improved as he has gotten older. We would like to think that  maturity and our efforts in exposing Brian to different activities have also helped him to tolerate and engage in social activities.

Sometimes, though, as much joy as we get from taking Brian to these recreational activities, it can also be physically demanding for us. I pray daily for good health to be able to keep this momentum going, for it is not easy with our plates so full  with our children’s needs, as well as our own. Finding that balance, while taking care of our special children and ourselves is critical.  I continue to learn that self care is essential for the long haul, particularly in this instance, when we will need as much energy as possible to keep moving.

“Oh, the things that I have done and the things that I will do in the future “, says Brian.
I feel sometimes that is exactly what Brian is telling us when we see the joy in his face while in the pool, or hearing  his laughter during a holiday party, or when he hugs people on the sports field. “Oh, the things that I can and will do, in my own time, and never when you expect me to!”, says Brian. Ain’t it the truth?!   🙂

Until next time….thanks for reading! 🙂

It surpasses most feats of control that I have ever seen in recent times. I cringe when Brian does this and I wish we could find a solution for it: I don’t know how Brian is able to hold his urine for several hours at a time. He will not go at school. He typically voids in the morning before the bus arrives and will go after he arrives home, but sometimes not until dinner. I am fascinated how this is even humanly possible and simultaneously concerned that he can damage his kidneys. Brian is given every opportunity throughout the day to drink fluids, but will typically take only small amounts at a time, unless it is very hot outside. We even had a visit to the emergency room last summer because Brian hadn’t gone to the bathroom in 17 hours! My menopausal bladder couldn’t  even imagine holding for that long! After blood work and a renal ultrasound, (which thank goodness were normal), he eventually went, but to say that this whole ordeal was stressful would have been an understatement. The ER physician just shrugged his shoulders and said “some kids just do this for no reason” and advised us to keep pumping fluids into Brian. This is the tricky part, as he is not a big beverage enthusiast, so while we try to do just that, we also supplement his liquid intake with foods, such as yogurts and mandarin oranges.

We have also presented Brian with a variety of different beverages to sample, with the hopes that he will really like one particular flavor and will want to drink lots of it. I had gone to the supermarket with this mission in mind and loaded up the shopping cart with 20 different kinds of juice/flavored waters. The cashier joked that I must be really thirsty upon check out, which was my exact hope for Brian, or at least to have a “thirst/preference” for one of these drinks. The results were ambivalent at best, but we keep trying…Children with sensory integration disorder require several trials of practice whenever anything new is presented to them. Slow and steady is necessary, along with lots of patience and praise. So far, Brian is taking sips here and there of everything, so at least it’s progress, but no Favorite Beverage yet. It can be exhausting, so I need to keep my humor intact and take some deep breaths….

Just to spice things up- Brian had 2 episodes of blood in his urine a couple of months ago, with the last episode warranting another visit to the ER. This time, I was more prepared and grabbed a pair of nail clippers and manicure scissors on the way out the door. I know Brian would receive Versed, a drug that provides delicious conscious sedation ( for more blood work and diagnostic testing), making any sensory activity possible, such as trimming Brian finger and toe nails, and hair. These personal grooming activities are otherwise very challenging, especially haircuts, which requires the strength of Hercules and 3 adults. My husband and I never sweat so much then after one of these episodes. The Haircutting Wars will be a separate blog of its own, so stay tuned! In the meantime, back in the ER….

More extensive blood labs were taken under Versed, (in addition to Brian’s annual blood labs, might as well kill 2 birds with the one stone and avoid a meltdown at Lab Corp!)and the results were once again normal, except for the white blood cell counts, which were high, and a blood marker called ASO, that was also very elevated and indicated that Brian had been exposed to strep at some point over this past year, (which he had been), actually 2 times with strep infections of the throat. I learned that strep can sometimes travel to the kidneys and do some serious damage. You can imagine my anxiety upon this discovery, trying nevertheless to be calm, but finding this difficult because of Brian’s extensive medical history.  This was probably  a urinary tract infection, (UTI), but the ER doctor said that only a postive urine culture could confirm that.  We would have to wait 48 hours for that result- so in the meantime, it was presumed that Brian had a UTI and he was to begin a course of antibiotics immediately. The second level of the renal ultrasound was normal, thank goodness, so at least structurally everything was OK, as well as Brian’s urinary function. So a clipped and coiffed Brian was discharged from the ER with a prescription in hand and a desire for the movie, “Frozen”.  His wish was granted after the intial dose of antibiotic was taken and then we waited for the urine culture results…

Fast forward to 48 hours later, the result is in, and it is: negative!  The ER doc recommended that we see a pediatric nephrologist as soon as possible, and to stop the antiobiotic. We were given a referral and set up the appointment for the following week.  Miraculously, I was able to collect a urine sample from Brian 30 minutes before our appointment. The high ASO blood lab result was still heavy on my mind right before we entered the doctors office, as much as I tried to dismiss it. You would think after everything Brian has been through: open heart surgery, an orchiopexy, eye surgery, ear.tubes, and various orthopedic challenges, that I would be somehow stronger as a result  or used to medical adventures. Heck, I’m a colon cancer survivor and went through surgery and 12 rounds of chemo!  But when it comes to our children, that instinct to protect them at all times is so powerful that it can supercede logic and rational thought. I was definitely having one of those moments again.

 

The pediatric nephrologist is warm and engaging . Brian connects with her immediately; I am at ease within a minute. She examines him without resistance on his part- unbelievable, it’s all good so far. Doctor then queries me, reviews the extensive ER report, tests Brian’s urine with the dipstick, then smiles broadly. The urine is normal! Drum roll……….and the verdict is: viral cystitis . This is a viral bladder infection, which can cause bleeding and takes a month to clear up, hence the 2 bleeding episodes that Brian had had. It also explains why the urine culture was negative, as it was not a bacterial infection. Viral
cystitis happens infrequently, which made me smile as Brian often  seems to be on the “rare line” when it comes to his medical issues. In this instance, the bladder was acting a little crazy, like a mad bladder does, when it has a viral infection. It presents like a UTI, but it’s not. It took an ER visit to get this ball rolling and the story concluded happily with this lovely pediatric nephrologist, so I am truly grateful. Regarding that pesky ASO blood lab result?…Doctor waved her hand dismissively when this subject came up- “This value means nothing-it only shows that Brian was exposed to strep at some point over the past year and has nothing to do with his kidney function. The number will return to the normal range over time”.  Hip,Hip, Hooray!! 🙂

But the best was yet to come. I explained Brian’s beverage intake challenges with the doctor. She agreed that Brian needs to drink more (though the viral cystitis was not related to how much Brian was or was not drinking) and suggested trying Crystal Lite. It’s one of the 20 beverages that we did NOT try yet and have lots of at home! Doctor further explained that Crystal Lite has an ingredient in it that breaks down kidney stones, while being tasty, and low in calories. Triple Bonus! And it’s super cheap to buy in bulk because of Costco. We already had tons of it at home, as my husband enjoys an “Arnold Palmer”,.which is Crystal Lite ice tea  and  lemonade mixed together.

As soon as we arrived home, I made an “Arnold Palmer” for Master Brian and he enjoyed it!  He didn’t guzzle it down, but he is taking at least more than a sip at a time, which is a better result than what we had with the other 20 beverages. How ironic that we have had Crystal Lite at  home for years now, but the idea for Brian to try it had totally eluded me. Brian continues to drink more Crystal Lite and we continue to explore other flavors, without breaking the bank. And as far as going to the bathroom? Brian still won’t go at school, but he is voiding more, as he drinks more. One day at a time…

It took a circuitous adventure to reach this happy ending, but I’m sure grateful that the troublemaker in this episode was just a mad bladder and nothing more. The Crystal Lite suggestion by the nephrologist proved to be brilliant and accepted by Brian, which is a huge deal and a relief for us.
Good ol’ “Arnold Palmers”- what a difference the right beverage makes for a young boy’s palate and a Mom’s peace of mind- cheers!!

Until next time- thanks for reading! 🙂