Good Grief! Can grief be a good thing?

It’s been more than two weeks now since we received a call from our child’s out-of-state doctor, an immunologist whom specializes in medically complex cases. Two weeks since we’ve heard the news “Yes, the test results indicate that your son has an autoimmune disorder called PANDAS.” Two weeks since we’ve once again changed medication and added new ones… two weeks, but almost seven full months of fighting a battle with our child that no one could have prepared us for!

“Good Grief!”, I think to myself, “Where did more than half our year go?” “Where has all that time gone?” On the inside, it feels like we’ve missed out on several years because the everyday battles seemed to send us into survival mode and we’ve just completely lost track with the rest of the world; many days not even caring what was actually going on that we were missing. I hate to be that frank but it’s the honest truth and when you’ve come from our past to where we are now… well it’s a bit daunting. Okay, it’s a lot daunting and to make matters worse, we’ve also received test results in the mail this week from neurological testing that was done over five months ago. Again, I think to myself “Good grief, when will our child ever catch a break?” This news has left us sorting through four different neurological disorders and one rare autoimmune disorder that roughly only about a hundred or so doctors in the U.S. are trained to treat.

When our child was three years old we learned of his very first diagnosis which was Autism and I remember feeling both tremendous relief and grief simultaneously; grief because my worry and fears about how his Autism could affect his life negatively, and relief because we then had a name and knew what path to take for the best possible help in the areas he needed regarding therapies. Autism, though it was new words to utter and it worried me immensely, was well known at that time and treatment was readily available at our fingertips. As for these new diagnoses we’re sorting through, I only know one name for them :GRIEF!

To quote Webster’s:
Grief ~ emotional suffering one feels when something or someone the individual loves is taken away.

Yes, grief is sometimes necessary when tackling a difficult diagnosis, let alone five of them. Grief soon welled up inside me as I read through the neurological reports just like it did when speaking to the doctor on the phone about the most recent lab results. I have grieved over many things regarding our child. When you hear the words “We don’t know if neurologically we will get him back fully,” from two or three specialist whose supposed to “cure” your child, well grief sets in. It’s not meant to and you try to fight the feeling back, after all you think “I still have my child here with me!” but the grief is there.

You think about all the therapy that he’s gone through, and “for what” you think.

You think of how far he’s come in those years of therapy, years you have spent watching him slowly build himself upward, defying odds stacked ten foot tall against him! “Where is it now?”

You think about how you are starting over, depending on how he responds to medication and again with therapies. Yet how do you begin to correctly cover the right therapies when some of these diagnoses seem to overlap, and some it the specialist aren’t even sure how to treat them?

You think about how your child was once only neurologically affected with Autism but now you know it’s not just one neurologic issue but several instead. To add to that chaos, he is now battling an autoimmune disorder and you will have that to contend with as well…. because it affects every last one of the other disorders! It alone complicates everything.

Then, you look at his picture like the one above… and you calm yourself, and you start to look through internet sites for things you’re going to need help with and you make a NEW list of contacts that’s local or within reach of where you live. You talk with your child’s school and teachers and administrators and all of his team of doctors so much that you feel like you’re at your child’s school or doctor’s offices more than you’re at your own home, because you are. You are collecting information, reports, test results, you are building your child’s new portfolio; a portfolio with many new sections now. You contact friends who know ‘people’ and friends that can call in a favor or two for you because they know of someone who can help too. And then, you begin to move past that grief. That grief that’s haunted you for weeks and months has started to fade. You are a parent, it’s what you do! You are just like any other parent out there trying to provide the best care for their child. Your child has lots of needs, yes, but you begin to work your magical will for his needs to be met!

You see grief takes many forms and I’ve found that grief can be an important aspect of helping you to ‘move on’ and lace up your shoes again, and hit the pavement to find what it is that’s missing from your child’s needs!

There is grief and then there’s “good grief” ….it allows you to find strength again. It helps you to stack those steps back up under your feet that just knocked you to the ground when all those new scary fears came pounding through your door and into your once safe home!

Lastly, I find that a dose of “good grief” will eventually make way to what always preserves as the key ingredient in moving past difficult times and that one thing is HOPE. If you can find hope in a difficult situation, you can turn it around, you can move past it! Hope will not allow you to stay stagnant, if you can find hope you can find a way! It may not be the way you pictured but hope will not leave you stranded and if you recognize it, it can be your lifeline!

“Don’t let your hope float away from you, when it’s there you will know it and grief will be in your review mirror!” I tell myself that a lot these days and now I share it with you… do you see it, there in the distance? it is your life preserver …go grab your hope too!

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“First do no harm!”

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I have thoughts on my mind tonight that I’d rather not have! When you read where one caregiver is taking out their own frustrations onto the child to which has a disability it becomes amazing clear that the caregiver needs to take a step back and reanalyze their thoughts on their child! Yes, I know our roles as special needs parents can be cumbersome, I’ve been on the journey for 10 years now myself and life-altering it has been! However, as a special needs parent I can also say that to ‘grow in your knowledge’ as a parent/caregiver and learn the true depth of your child’s disability and what his/her needs are, should really become an overall “tone” that you carry.

My frustration starts from the moment it is clear that this caregiver throws their child’s “bad day/weekend” into a category of “not going to let him get away with it” type behavior! As if to make a point of saying that they believe the child is in total control of his/her actions! I will stop here and say on a side note that: having a disability can sometimes give a person the wrong idea, especially a young child, that they can get away many of life’s daily irritations JUST because they have a disability ….and their momma’s said so! Ha! I know all too well that mentality ….and I work feverishly to ensure that my little Hero does not try to play the disability card. I can think back to a recent time where my little angel was getting out of the car and bumped his foot and proclaimed “I need a wheelchair, I cannot walk!” Needless to say, we had a long talk about what it means when one “needs” a wheelchair.

Another thought on this topic is that when a child with a developmental disorder that’s characterized by impaired social interaction, verbal and non verbal communication and restricted and repetitive behaviors, is having a ‘bad day’ it is wise to seek out the “whys” and “what may be causing this behavior” questions rather than simply writing it off to bad behavior.Question things like: What changed today that made it hard for him/her? To assume that the child can control it and was just attempting to make the caregivers day difficult proves to be bigger ‘trouble a brewing’ down the road.

By far my biggest hurdle in accepting this person’s out of place comments is that it was done so ‘tongue and cheek’ as to amuse their audience. I totally understand the need to unwind after a difficult day of parenting but at the expense of your disabled child is not acceptable! Yes, I make reference to hardships and sometimes the oddities that come with raising a non typical child, but mostly to show the world around us that though our life is different, it is okay.

I remember the early days of not knowing our Hero’s needs. It had a lot to do with me just wanting things to get easier, I wanted my life to roll on by like everyone else’s around me! That made me mad quite frankly and I wanted a normal life, plain and simple. It was easy to get upset at the very situation that my son could not help. I had my share of those days, wanting “change” …..truth is, it was not him that needed it, it was me!

I always like that phrase “The most import days of your life are :the day you were born, and the day you find out why!” ~ Mark Twain. To me, the day I truly started to enjoy myself as a parent was not so much the day he was born, however, it was the day I quit trying to change him so much and I started to accept him instead. That was my “why” in life, it all started to make sense!

lastly, I don’t write about this frustration I saw from this fellow parent because I want to belittle them, instead I’d like to educate them as to how they are in this for the marathon, not the sprint! It takes time to raise a special needs child, you will learn this ….pace yourself. In the meantime, enjoy the ride and advocate for him ~ then you will know your “why!” I HOPE you find it for the both of you!

“Different, Not Less!” ~ T.G.” ~ The disadvantages of an invisible disability!

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So when looking into the eyes of my son who will turn 10 years old this fall most people at first glance would not give a second thought to him having a disability. He is able to walk on his own, he can see, (more or less), and does not need a device to get from place to place! I am thankful of this indeed, however, at times having an invisible disability can be hard for others to process just why he can be so “different, yet not less!” as Temple Grandin once said about the Autism community.  It is human nature to have the attitude of “what can he/she do for me?” All too often these attitudes come very early in life although most parents never want to admit that their children have inherited this family trait and will quickly try to “right” a situation when little Johnny or Sally shows disrespect at the public playground! The question we really should all ask ourselves is how do we perceive ourselves to our children in everyday life that tells them how we truly value others …..both different and alike!

The first few years of our superhero’s life were all about uncovering why he had behaviors that often forced us to leave public places to calm him, if not avoid them all altogether! His poor vision, social skills, lack of communication and often complete anger and confusion eventually lead us to a proper diagnosis and thankfully, by 3 years old, there was a name for all of his puzzling ways: Autism! I actually felt relief and so did my husband when we heard those words from the team that reported the diagnosis! It was then that we could start towards a beneficial road to getting Connor the much needed help and therapy that was out there and available!

By summer time after the winter diagnosis of Connor’s autism,  I had already quit my career and left it in the dust! My mission was set and I had no plans to look back ……and to be perfectly honest, our first encounter with our son’s school system was that there was much to be changed on how and what type of services were provided! It was clear that we would need to supplement a majority of the therapy he needed privately or fight the school right out of the gate on our first year with him as a preschooler? We instead hired an advocate whom already knew Connor and could speak openly at his IEP about his needs, (and she did just that!) The school met us half way, we were happy and we supplemented the rest privately both during the school year and in the summer months too!

Our routine has not changed much over the past 7 years except to say that Connor is pretty conditioned to being almost a year around student! He does get breaks during the summer but for every “Off” day he has a “school” day! The effort he has put into it has brought him light years from where he began …..at 4 years old he could not speak intelligible words! Now, he can speak with most skilled listeners understanding him about 80% of the time! Adults usually understand him more easily that his peers ….but it really ALL depends on IF the child wants to stop what they are doing long enough to TRY and understand what Connor is conveying to them!

Yes, it is true my child looks exactly like your child from head to toe but if I could just take you aside for a minute, you that mom or dad and say this: I need YOU to know these things that you and your child cannot see when looking at my child:

PDD-NOS (pervasive developmental disorder-not otherwise specified.) ~ Autism.

Ocular Motor Dysfunction ~ the absence or defect of controlled, voluntary, and purposeful eye movement. People with this condition have difficulty moving their eyes horizontally and moving them quickly.

Dyspraxia ~ A disorder that can affect planning of movements and co-ordination as a result of brain messages not being accurately transmitted to the body.

Sensory Processing Disorder ~   A condition in which the brain has trouble receiving and responding to information that comes in through the senses.

Auditory Processing Disorder ~ A variety of disorders that affect the way the brain processes auditory information. Individuals with APD usually have normal structure and function of the outer, middle and inner ear (peripheral hearing). However, they cannot process the information they hear in the same way as others do, which leads to difficulties in recognizing and interpreting sounds, especially the sounds composing speech.

Hypotonia ~ is a state of low muscle tone (the amount of tension or resistance to stretch in a muscle), often involving reduced muscle strength. Hypotonia is not a specific medical disorder, but a potential manifestation of many different diseases and disorders that affect motor nerve control by the brain or muscle strength.

These things ….I know you cannot see them but they exist in our world! Our superhero battles them each and every day and I admit I sometimes forget all these terms and what they all mean because like ,YOU, I cannot see them either! But he battles through his day with all these things working against him and guess what? He STILL wants very much to befriend your child! How wonderful is that? He still puts a smile on his face and even with all these worries and struggles working against him…. he STILL bebop’s right down the street on his “off” days in the summer time looking for your child to play with because to him ….your kid’s the “best” and he just wants to be like him!

So PLEASE this is in no way a mom’s cry for pity, not even an ounce of it, it’s a cry for respect! My kid’s a Superhero, just like your Superhero!