Peaks and Valleys

A new dawn arises and the journey begins again. As with most things there are peaks and valleys.

I've certainly had my share on this journey. My mind scarcely allows me to believe these days may someday pass. I muddle through the days, weeks and sometimes months not able to fully identify my feelings; let alone put them into words. 

That is why I thank God today for gifting me the ability to give voice to that which lies deep within. 

I am grateful. I am humbled. I am hopeful and I am not alone.

  

Being a parent can be challenging at times. Even more so when you add global developmental delays, sensory processing disorder, intellectual disability, dyspraxia, gastrointestinal symptoms, sleep disorder, epilepsy and autism. So what do I get? A life filled with uncertainty preceded by hope.

Faith and hope are what pave my path. I could tell you my life has been one joyous event after another or I could tell you my life has been one disastrous challenge after another, either way I’d be lying. Life has been a treasure trove of peaks and valleys. Both of which are joyful and challenging. Both of which are necessary. They are the IT that gets us out of bed in the morning and they are the thing that makes us cry ourselves to sleep at night. Peaks and valleys are what shape us into the richly dynamic people that we are.

At the end of the day every challenge comes with a measure of success and every joy, gratitude.

If I had it all to do over again, I wouldn’t change a thing. I can’t begin to imagine my son being anyone other than who he is. I can’t imagine myself being anyone other than who I am. Are there days I get fed up and scream into a pillow…sure, but don’t all parents have days like that?

What matters most to me is who my son is, not his diagnosis. He’s a warm, charismatic, humorous, thinking individual who loves life and loves to love. He’s a helper by nature and a nurturer by example. I am in awe of his inner strength and ability to overcome adversity. He never lets anything keep him down for long and when life gets real hard, he still has hope. He never ceases to amaze me with his budding abilities. He is a master of resilience. I’ve learned so much about life and living from watching him. I don’t think it gets much better than that.

On the other hand, valleys are the residual of a world less receptive to disabilities. Valleys are the gawking stares and hateful words, the snickering behind ones back. Valleys are the abuse inflicted on us because we are thought to be of little or no value. Valleys are the injustice inflicted on those thought to have no voice or no feelings. Even to the professionals who take away hope and fill us with fear. Valleys are deep and wide and never ending.
 

There has to be balance.

If not for the valleys, what would we fight for? What would be the fuel for our fire, our passions?

Peaks and valleys will always come and go. What's most important? Not so much the fight it takes to get from one point to the other as it is to recognize what the peaks and valleys offer. They offer vital information and the growth needed to sustain us. Peaks and valleys force us to take pause, make mental check lists, reflect and deflect, regroup and get prepared for the next phase of the journey.

Galatians 5:22 (KJV) - But the fruit of the Spirit is love, joy, peace, longsuffering, gentleness, goodness, faith,

Romans 5:3-4 (NIV)

³ Not only so, but we^[a] also glory in our sufferings, because we know that suffering produces perseverance; ⁴ perseverance, character; and character, hope.
 

Dear God, please bless us all with the strength to stay on our path and the ability to endure it.

Trust Doesn't Always Come Naturally

 



As parents we often think that the trust our children have in us comes automatically. It seems to always work that way. Touch, smell and tone of voice are the first connections between baby and parent(s).  The baby cries and the parent(s) responds. It doesn’t take long before baby realizes how to keep mommy and daddy on their toes. All of these wonderful things create a powerful bond between babies and their parents.

        




What happens if the child is not able to receive such stimuli be it because of logistics or differences in neurological function that make it difficult for the child to respond to or understand typical stimuli?

Trust doesn’t always come automatically. I found that out through my own personal experience as a parent.

My son arrives at 27 weeks two days. Motherhood does not resemble what I imagined it to be. At first, everything was going well. My baby was small, but feisty. At a week old he became very ill. Necrotizing enterocolitis (NEC) happened. Apparently his heart flap didn’t close so nourishing blood did not redirect to his gut and he developed an almost fatal case of NEC. One heart surgery and three gut surgeries later we are locked in a battle between life and death.

I tried to make the best of it, staying positive and be the best mommy our situation would allow. I visited my son daily, always doing as much as I could for him. The NICU nurses were better than wonderful. They always called to let me know if anything was changing or if I needed to come in to support him during rough times. I received those grim calls more time than I care to remember. It was a never ending rollercoaster ride.

Three months later; I walk into the NICU for my daily visit. There sat the Attending smiling as big as he could while singing, “There she is, Miss America.” I giggled. In an instant his smile becomes more humble and soft, tears well in his eyes. His lips quiver just a little he uttered the words, “I’m filling out discharge papers for your son. You’re taking him home.”  This was a dream I never thought would come true. God answered my prayers. It was 4 days before Christmas.

My husband and I scramble to get everything ready for our baby to come home. It was the happiest time of my life. The baby didn’t seem to mind all of the shuffling around. He was quite pleasant, never cried or fussed. We got him home and began to settle into our new family life. The next morning I woke up early to get his bottle and medicines ready. I peeped at him saying, “good morning.” He took one look at me and began to scream an inaudible scream; eyes wide with furrowed brow and tears streaming down his cheeks. It took a minute before I realized he was terrified. I imagine he could not understand why he wasn’t in the NICU, the only place he knew and where he felt safe. And I’m sure he couldn’t understand why the nice lady who visited daily was the first person he saw that morning. All I could do was comfort him and tell him it would be alright. I assumed that he trusted me because he saw me every day, but he didn’t, not outside the safety of the NICU.

It didn’t take long before we both got the swing of things and the mother/child bond began to take place. It was heaven when he finally realized I was all his and he was all mine.

When my son turned three I decided to put him in a special preschool class called, Let’s Talk Too, which was made up of 70% typical and 30% non-typical children. He loved it. I loved it to until an incident happened that changed everything. I promptly took him out of the class and scheduled and IEP meeting to officially take him out of the school.

Right around the same time autism arrived. Well, it already began presenting itself when he was about 28 months. I knew very little about autism, no more than what I read when I googled the traits he exhibited. I found a list of the 10 most common traits of autism. Out of the ten, my son had eight. The next thing I looked for were ways to treat autism. I came across some therapeutic exercises and began working with him immediately. While doing so I began working on scheduling an appointment with our local autism specialists. My son didn’t get the diagnosis. The only reason I can attribute for this process having taken so long goes back to something said to me during our first attempt at getting an autism diagnosis. I was told by one of the specialists, by working with my son so diligently, I’d probably shot myself in the foot. It would take 5 years before an official diagnosis was rendered. Go figure. Being a parent who is proactive and working to do the right thing ends up being the worst thing.

Fast forward.

My son is 8. He has been officially diagnosed. We are now able to get specialized therapists to work with him and I am finally able to focus on his homeschool. For the past 5 years I searched for speech and occupational therapists willing and able to work with my son. Not having a proper diagnosis really hindered my ability to get the therapies he needed. I had to do doing everything on my own with exception to physical and hippo therapies.

Therapies are now in place, but school is not going well. My son is fighting me every step of the way. He will not listen to me or follow instructions for school work. At first I thought it had to be the autism, but he wasn’t giving me grief about anything else, just school work. Then it dawns on me. The rolls I’ve been in for most of his life have been the nice lady visitor, mom/caretaker/nurse, therapist, playmate and now teacher, a roll he was not familiar with me being in. What do I do? I sat down with my son and began to explain as best I could that I wanted to teach him wonderful things and I showed him examples of the things I wanted to teach like the alphabet, numbers, counting, drawing and all sorts of other things.  I asked him to trust me and allow me to teach him. He seemed to agree and we began the process of adjusting to our new rolls as teacher and student.

Over the years we have had to adjust to many things and with each thing gaining trust was always the priority.

My son is 16 now and has a mind of his own. There are many things I still have to teach him as he transitions into adulthood and there are many hurdles we have yet to cross. One thing I no longer have to worry about is gaining his trust. I guess we’ve been through enough for him to know that I’m in this for the long hall. No matter the situation, be it school, work, medical or other; it is met with my son’s calm, trusting demeanor and a knowing that no matter what, we will get through it and it will be okay. 

The Science Behind Hugs & Deep Pressure Therapy

 

Guest blogger Lisa Fraser  is the CEO and founder of Snug Vest, a company that makes inflatable vests to reduce anxiety in individuals with autism and other sensory disorders.   She first developed Snug Vest as an alternative to the weighted vest, and discovered its ability to reduce anxiety and meltdowns.  Lisa continues to be a leader in the field of Deep Pressure Therapy as well as in the autism community.



We all like hugs. They make us feel loved and protected. But there is more to it than that! For many individuals with sensory regulation challenges, the deep pressure input that hugs provide can help regulate their sensory system. Many kids will squish themselves under couch cushions, wear a heavy backpack, or crash into things in search of that Deep Pressure. Why?

(Child receiving deep pressure by being squished in between couch cushions)

 

It all has to do with the proprioceptive system. For most of us, we are quite aware of our where our bodies are in space. We can keep our eyes on the road while adjusting the pressure we apply to the pedals of a car. We can pass a basketball without looking at our hand. We can put a spoon in our mouth without needing a mirror. This is because our entire nervous system is working together to tell us where our body is and make adjustments to meet the requirements of the situation. Want to test your proprioception? Watch this video!





For individuals on the autism spectrum, their nervous system doesn’t always give them the enough feedback. Just as they may be under or over sensitive to touch, they may also have trouble figuring out where their body is in space. This results in anxiety and an inability to focus. Other sensory challenges such as loud noises and bright lights can set off a chain reaction, often making it hard for people with autism to be in grocery stores, eat at restaurants and concentrate in school.

One of the common solutions for this is Deep Pressure Therapy. The idea of Deep Pressure was originated by Dr. Temple Grandin when she famously asked to be squished in her family’s cattle squeeze shoot. For Grandin, as with many individuals on the spectrum, touch was a challenge. Having a machine that could provide her the pressure without the social and physical complications of a human hug was the perfect solution. She went on to invent the Squeeze Machine and introduce the world to Deep Pressure Therapy.

(Lisa Fraser, Temple Grandin and Monica McMahen)

Deep Pressure Therapy is used in therapy centers, homes and schools to help keep people on the spectrum calm. Common types of Deep Pressure include the “burrito roll” (rolling the individual in a carpet), using a rolling pin to provide pressure, and hugs.

(Child in a “burrito roll” to receive pressure)

Want to learn more about how Deep Pressure Therapy works? Listen to Occupational Therapist & Neurobiologist Kim Barthel explain how it works!




There are also many products that can help provide deep pressure. The lack of portability and expense of the Hug Machine led to weighted vests, neoprene vests, and now the newest product Snug Vest. Snug Vest is a vest that uses air to provide portable Deep Pressure Therapy, and looks stylish doing it! By not using weight it is safe for the user, and the amount of pressure can be adjusted to the exact amount the user needs. The size is also adjustable so that the wearer doesn’t grow out of it.

(Red Snug Vest)

Snug Vest is used in classrooms, therapy centers, homes and communities across North America. It has helped kids like 4 year-old Antony shop at Walmart, 8 year-old Buddy improve his handwriting and 16 year-old Danny eat at restaurants, and. Click here to learn more about Snug Vest and see if it might help you or your child!

(16 year old Danny wearing Snug Vest in a restaurant to reduce his anxiety)