Update


So I haven’t blogged in quite sometime.  There is a sad reason.  Four days after my last blog when I had strep throat (again), Pedro took Matt to our pediatrician.  Matt had been drinking about 200 ounces of water a day.  I was hoping Matt had become obsessed with drinking water, which obsessions among children on the autism spectrum are not uncommon.  I had called the pediatrician twice, asking what they thought I should do for Matt.

On both occasions a nurse in a condescending tone asked, “Mom, is there a history of diabetes in your family?”  To which I hesitated and said, “no.”  “Well, then mom, there is probably nothing to worry about.”  On the second time I questioned and again they coldly stated, “If it would make you feel better mom, then maybe you should put him through a finger check.  He will need to fast until he is checked.”

On April 13th, Mattey laid around all day.  I would ask, “Do you feel sick anywhere?”  To which he would answer, “Me never feel good neither.”  Which has always been code for Matt since he was about two that he was feeling sick.  I felt alarmed.  But I had just gotten an antibiotic for strep throat, and didn’t want to risk infecting others.  Matt has a hard time communicating where he feels sick at, this is just Matt.  I am hoping as he grows, he will communicate better.

So on April 14th, 10 days before Mattey’s fifth birthday, my then husband who is also, Matt’s daddy took Matt to the doctor.  They pricked his finger.  His level was 179.  They were not alarmed by this and told Pedro that he could take Matt out to breakfast.  Then I got a frantic call, that no longer makes sense to me that they looked on a chart for 7-9 year olds & Matt’s level should be much lower (which is bull, I now know 179 is NOT a good number).  They wanted us to quickly get more blood drawn at the closest children’s hospital laboratory.

They went.  Pedro quickly left Matt in my care.  He needed to get to work, this had taken longer than he had expected.  I had that mommy feeling like I was going to need a sitter for Sophie.  So I went to my mom’s and got Matt, Sophie, my mom and me lunch.  No sooner had we started to play outside and enjoy the sunny day did my doctor herself tell me to go to the endocrinologist immediately.  Mattey was nearing 500 in his glucose level.  I knew Matthew had type 1 diabetes.

The pediatrician had “mercy” on us.  Instead of sending us to our local children’s hospital where we would be staying for four days, she sent us to a doctor who was close to our house who would educate us in his office for the next three days with no admittance into a hospital.  Our doctor thought that would fit our family dynamic much better.

So at the endocrinologist office Matt was given his first two shots and many more blood draws and so our life incredibly changed.  Now I carry a glucagon shot with me everywhere, that might save Matt’s life someday should his blood sugar plummet.  I carry 15 gram carb juice boxes with me everywhere.  I have them in medicine cabinets, stuffed in glove compartments, and in pockets of his favorite jackets.   Then there are 10-15 grams of carbohydrate snacks.  And I carry as many “free” foods as I can find that he will tolerate.  Free foods are made mostly of protein and do not contain carbs.  Carbs need insulin to digest.  So when Matt is hungry and is not snack time or meal time, free foods come in handy.  He is an extremely picky eater so this has been very hard.

Matt dreams of the day he gets a pump and asks daily, “Do I have diabetes?”  It has been a very life changing experience.  I am now good at finger checks and shots.  I never thought I could do anything like this.  But when it comes to our children super power kicks in and you do what is needed.  We just step up to the plate.

We are believing for a miracle, for God to touch Matt’s body so he won’t have to do this anymore.  But until then, a pump is in sight, where Mattey won’t need four shots a day and his site will only be changed once every three days.

We have started ABA therapy in our home for Matt.  We have sought psychologists to help Matt eat more.  He usually only eats bacon and yogurt for protein.

I will begin to blog again.  But for now, I urge every parent to go with their gut feeling in helping their children.  I thought Matt was having some problems with water around Christmas.  If I would have only had his finger pricked then, it would have been much better for his overall health.  If you are concerned for your child in any way, know that “mommy knows best.”  Go with your gut, don’t be afraid of labels or “scaring” your child.  Embrace your child for who they are, but get the help and services they need for them to become all that they can be.

At a makeup party of all places, I was telling how Lee had become very irritated that he was off schedule by just a fraction.  In talking, another mom remarked that a school nurse had shared with her that her very own son might be an asperger’s syndrome child.  The school nurse urged the mother to not repeat that she had suggested such a thing to anybody.  This mother began to ask me about Lee because he has been diagnosed asperger’s.

In talking, I could see light bulbs going off in this mother’s mind.  It was clicking for her.  Her son who had made her question and wonder was slowly becoming understandable as I talked.

On vacation, I witnessed a dad threatening to spank his child because she could not stand the feel of the sand in her feet and was not tolerating her feet being dirty.  A few years ago, I would have thought the little girl was being bratty but today, because my lens has been changed, I felt great compassion for the little girl and knew she was suffering from sensory issues.

All of us are changed by the days that we live.  Our lens is shaped daily on how we see life and how we see our children respond.  Sometimes children that melt down often are children crying out desperately for help.  They are having problems with their lens on life and life appears intolerable, hurtful, or even totally confusing for them.  There is help and therapies out there for children who need extra and I urge anyone reading to find them for their children instead of sweeping the dirt under the carpet hoping it will get better.

Life for Matt was again not going to get better until I decided to get help even though I was not encouraged by the person on the other end of the phone.

For developmental concerns or even learning disability concerns in Ohio there are a few quick steps that can help financially: 1) Contact Beureu for Children with Medical Handicaps (BCMH) and tell them your concerns.  Ask them if they can open a case for you for diagnostic testing.  2) Contact your county and tell them you are concerned your child may need extra therapies and see if they can provide anything.  3) Get your child assessed by your local hospital or psychologist , to decifer what types of interventions your child may benefit from.

In closing, I urge you not to wait.  I waited too long for Lee.  People questioned if he was “special” from the time he was a little baby.  I was in “deny, deny, deny zone.”  I inwardly knew he needed extra help, but was wanting everything to magically “click.”  That didn’t happen.  Consequently, he did not receive the right types of help until he was almost eight and at that point, I was so desperate for him to get “better,” I would have done anything.  I would have accepted any label if it would just help me connect with my son and help him out of the “dark hole” he had climbed into.

Matt now is receiving “early intervention.”  I can not tell you what a difference there is!  Much of Matt’s early intervention would dramatically help Lee even though he is so much older.  And so the adventure continues and so the story of advocation goes.  I advocate to get Lee as much help as Matt is getting even though Lee is older.  And so life continues an ever-present adventure at every turn.

I will continue to blog about our adventure with Lee soon.  If your child is peeing everywhere and wetting at night, get him tested for diabetes.  It is not painful.  But the pain of having his blood sugar so high, I can not imagine for my Matt Man.  Go with your gut and seize the day.

Websites that are helping Lee with math right now are: http://www.AAAmath.com, www.arcademicskillbuilders.com, and http://www.harcourtschool.com/activity/thats_a_fact/english_4_6.html.  Maybe they will click with your child and brighten their days.  Try it out.

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2 thoughts on “Update

  1. I know how the roller coaster ride of uncertainty is when it comes to us moms making decisions. Caught between fighting tooth and nail for our children and the nagging feeling that we are not ‘experts’ [and therefore could be dead wrong]. I vacillate between being a strong, well read advocate and sitting back and letting the ‘experts’ do what they need to do. Kudos to you and your hubby for taking him in! Keep praying for wisdom and I’ll keep praying for your family.

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