We are storming into the first day of May here with the weather man calling for snow today.
Good news..we will be back up in the 70's by the end of the week..!!
So, I wanted to give a little blurb about Autism Awareness Month...like in April..but, for whatever reason I've found myself busy with all sorts of other things. Things like: card making, dress-making, a few craft fairs, and then having a horrible sinus infection that I just couldn't shake..!
So, needless to say there was very little Autism Awareness coming from me in the month of April!
I suppose I'll give you the short story of how we ventured here..
My son, Evan, is almost 6 years old. He is and has always been wired differently.
(Here I will interject that I have reservations about him being just like every other kid now..and in fact, I sort of want to meet him in that place and help him maximize his potential for naturally thinking different and seeing the world different..!)
But, more on that another blog..and on to the beginning.
So, we bring home this little bundle of joy almost 6 years ago..and ladies I was the most unprepared and pathetic first time mamma..! I was a "mess"..a "hot mess" to be exact! And, I can say I've gotten better..but, I have "hot mess" on speed dial..for many occasions still!! ;)
That is important for you to know...because that is where I was at my worst..and that is where my guilt will be most prevalent and I didn't notice early signs because he was my first child..!
So, my first issue was with breastfeeding. He had trouble latching on..but, I had over-active let down..and it didn't matter so much after a while. But, the lactation consultant said I could take him to Ocupational Therapist to help him with some mouth exercises.
We thought they were just being weird..we took suggestions on changing his position on breast-feeding and voila..everything was solved!!
After we didn't sleep for almost 7 months..we finally put him in his crib and let him cry..mamma was at the end of her rope..my faith in being a mother was gone and my faith in God had been tested! My quest as a mother was a hard one..not with a set of parents or family to help me adjust..or even the background of having a normal childhood made me feel a little testy at God and just how was I supposed to do this so alone..so lonely..and always lost!!
After we slept for about a week, though, my confidence returned. Funny thing..sleep..it has a way of making you see the world in a much better light..!! :)
I hit rock bottom in my faith, though, but I have an all time low..as a marker to never go back there again..and have chosen to look for those tiny glimpses of God in the small things.
I won't lie, though, I have a hard time with things even now..but, I just keep pressing on!
Back to Evan, well he seemed to be doing ok after the sleep issue, but we moved when he was a year to Fl. We didn't notice he had very poor fine motor skills..not until we had Olivia 3 years later...
So, at around 15 months he had a fixation on turning bikes over or things with wheels and spinning the wheels. He would carry cars around with him at eye level and watch the wheels spin back and forth and be very fixated on it.
We would take him to the park..and instead of him playing like other little kids naturally do..he would run out into the street...causing us to chase him..and most park days when we wanted to let our kid have a fun time..we would carry him home or to the car under our arms screaming.
It was a miserable time for Scott and I..we thought it was all our fault...and that we must have done something wrong.
We took him to gymboree for a little while..controlled play. He would go up and hug other kids and it would sort of make them wobble and fall down.
We had issues at the Y.M.C.A childcare...same issues with other kids.
We got kicked out of a church program...it got worse..never usually malicious..but, it left me angry at him and often times he would get a good spanky when we got home.
He didn't really register that, though..!
He spoke..but, it was a parroting talk like we would ask him if he wanted milk or juice..and he would say "milk or juice" and never really answering the questions. Causing of course an insane amount of frustration as you can imagine over every other aspect of life.
We started with a diagnosis of SPD..sensory processing disorder..because he would be so content in the sandbox and would almost drool because it was a natural calm for him.
Sensory kids are the kids that can play in sand, rice, play-doh and enjoy water or bath time immensely. Or I should say some..because you can be hypo-sensitive or hyper-sensitive to those things. So, plainly he got a nervous system "jump" by playing in those things. There are those kiddos who it physically hurts them to touch those things, too.
So, he likes to jump on beds, crash into things like couches and physical contact.
Then we moved to Colorado Springs. We still didn't know what was going on. Still had issues with childc-care..and with a newborn. So, I wasn't sleeping but started noticing Olivia would try to communicate with me at around 6 months..and then all the other things Evan didn't do was astounding. I have to interject with she's also a girl...so we do take that into consideration.
We pursued Occupational Therapy..and later ABA therapy and then we were forced to get a diagnosis to keep ABA therapy. At age 3 we were given the diagnosis of PDD-NOS and then still didn't realize it was autism until around 4 months later.
So, we finally found peace..but, we had been through so much it had taken it's toll on us. We went without date nights for around 2 years until we qualified for respite through military. Our patience had left us...we had trouble even wanting to make friends mainly because we just had to always stay on top of Evan and what he was doing...it was always something. We had trouble in church, and had to get all sorts of stuff for his IEP at school..because he needed extra Ocupational therapy there and an autism expert.
Meanwhile, his potty training came later..with constant questioning of our parenting skills on top of always given a good talking to about his behaviour....by almost everyone..!
His preschool teacher would send home a notebook everyday.
It was a new normal for us to have some sort of therapy everyday a week.
I wanted him to have play-dates and make friends at the park..that's only just happened in the past few years.
It was always about Evan...and I never once was asked how I felt..how broken, and lifeless, friendless..althought there were some of you who came along side and made the pain go away.
Someone asks why the church doesn't do more...well..I guess that's where I come along..since I am the church, right?!!
But, before you judge anything..things have gotten better. God has been good and faithful to help us through..and we've still got a journey, but we aren't alone now. We have a ton of friends who share the same diagnosis..and a whole bunch of new friends who have been gracious..and loving and supportive.
So, this my friends is a small taste of our life over the past few years..ain't it grand?!!
:^)
Good news..we will be back up in the 70's by the end of the week..!!
So, I wanted to give a little blurb about Autism Awareness Month...like in April..but, for whatever reason I've found myself busy with all sorts of other things. Things like: card making, dress-making, a few craft fairs, and then having a horrible sinus infection that I just couldn't shake..!
So, needless to say there was very little Autism Awareness coming from me in the month of April!
I suppose I'll give you the short story of how we ventured here..
My son, Evan, is almost 6 years old. He is and has always been wired differently.
(Here I will interject that I have reservations about him being just like every other kid now..and in fact, I sort of want to meet him in that place and help him maximize his potential for naturally thinking different and seeing the world different..!)
But, more on that another blog..and on to the beginning.
So, we bring home this little bundle of joy almost 6 years ago..and ladies I was the most unprepared and pathetic first time mamma..! I was a "mess"..a "hot mess" to be exact! And, I can say I've gotten better..but, I have "hot mess" on speed dial..for many occasions still!! ;)
That is important for you to know...because that is where I was at my worst..and that is where my guilt will be most prevalent and I didn't notice early signs because he was my first child..!
So, my first issue was with breastfeeding. He had trouble latching on..but, I had over-active let down..and it didn't matter so much after a while. But, the lactation consultant said I could take him to Ocupational Therapist to help him with some mouth exercises.
We thought they were just being weird..we took suggestions on changing his position on breast-feeding and voila..everything was solved!!
After we didn't sleep for almost 7 months..we finally put him in his crib and let him cry..mamma was at the end of her rope..my faith in being a mother was gone and my faith in God had been tested! My quest as a mother was a hard one..not with a set of parents or family to help me adjust..or even the background of having a normal childhood made me feel a little testy at God and just how was I supposed to do this so alone..so lonely..and always lost!!
After we slept for about a week, though, my confidence returned. Funny thing..sleep..it has a way of making you see the world in a much better light..!! :)
I hit rock bottom in my faith, though, but I have an all time low..as a marker to never go back there again..and have chosen to look for those tiny glimpses of God in the small things.
I won't lie, though, I have a hard time with things even now..but, I just keep pressing on!
Back to Evan, well he seemed to be doing ok after the sleep issue, but we moved when he was a year to Fl. We didn't notice he had very poor fine motor skills..not until we had Olivia 3 years later...
So, at around 15 months he had a fixation on turning bikes over or things with wheels and spinning the wheels. He would carry cars around with him at eye level and watch the wheels spin back and forth and be very fixated on it.
We would take him to the park..and instead of him playing like other little kids naturally do..he would run out into the street...causing us to chase him..and most park days when we wanted to let our kid have a fun time..we would carry him home or to the car under our arms screaming.
It was a miserable time for Scott and I..we thought it was all our fault...and that we must have done something wrong.
We took him to gymboree for a little while..controlled play. He would go up and hug other kids and it would sort of make them wobble and fall down.
We had issues at the Y.M.C.A childcare...same issues with other kids.
We got kicked out of a church program...it got worse..never usually malicious..but, it left me angry at him and often times he would get a good spanky when we got home.
He didn't really register that, though..!
He spoke..but, it was a parroting talk like we would ask him if he wanted milk or juice..and he would say "milk or juice" and never really answering the questions. Causing of course an insane amount of frustration as you can imagine over every other aspect of life.
We started with a diagnosis of SPD..sensory processing disorder..because he would be so content in the sandbox and would almost drool because it was a natural calm for him.
Sensory kids are the kids that can play in sand, rice, play-doh and enjoy water or bath time immensely. Or I should say some..because you can be hypo-sensitive or hyper-sensitive to those things. So, plainly he got a nervous system "jump" by playing in those things. There are those kiddos who it physically hurts them to touch those things, too.
So, he likes to jump on beds, crash into things like couches and physical contact.
Then we moved to Colorado Springs. We still didn't know what was going on. Still had issues with childc-care..and with a newborn. So, I wasn't sleeping but started noticing Olivia would try to communicate with me at around 6 months..and then all the other things Evan didn't do was astounding. I have to interject with she's also a girl...so we do take that into consideration.
We pursued Occupational Therapy..and later ABA therapy and then we were forced to get a diagnosis to keep ABA therapy. At age 3 we were given the diagnosis of PDD-NOS and then still didn't realize it was autism until around 4 months later.
So, we finally found peace..but, we had been through so much it had taken it's toll on us. We went without date nights for around 2 years until we qualified for respite through military. Our patience had left us...we had trouble even wanting to make friends mainly because we just had to always stay on top of Evan and what he was doing...it was always something. We had trouble in church, and had to get all sorts of stuff for his IEP at school..because he needed extra Ocupational therapy there and an autism expert.
Meanwhile, his potty training came later..with constant questioning of our parenting skills on top of always given a good talking to about his behaviour....by almost everyone..!
His preschool teacher would send home a notebook everyday.
It was a new normal for us to have some sort of therapy everyday a week.
I wanted him to have play-dates and make friends at the park..that's only just happened in the past few years.
It was always about Evan...and I never once was asked how I felt..how broken, and lifeless, friendless..althought there were some of you who came along side and made the pain go away.
Someone asks why the church doesn't do more...well..I guess that's where I come along..since I am the church, right?!!
But, before you judge anything..things have gotten better. God has been good and faithful to help us through..and we've still got a journey, but we aren't alone now. We have a ton of friends who share the same diagnosis..and a whole bunch of new friends who have been gracious..and loving and supportive.
So, this my friends is a small taste of our life over the past few years..ain't it grand?!!
:^)
Oh, how I remember those first days, weeks and months with Evan. I remember his second day, still in the hospital, when you said, "I think he is mad that he had to leave his nice warm, quiet place.". And then when you discovered he would sleep great in the shopping cart at Sam's club, but not in his crib.
ReplyDeleteMy heart hurt for you so much and so often, especially after you had moved away. I honestly think that God put you where you needed to be to get the right diagnosis and treatment for Evan. He is thriving now, even if in his own unique way.
I have a patient whose son would remind you so much of Evan. He is now 17. His last SAT score was 2150 and he is now looking at colleges. There is hope. Just hang on and keep trusting the One who created him.
Thanks Terea..love this!! I am so happy you could be there to be a part of Evan's life..and mine!! Loving on you and thanks for all your words of encouragement!! :)
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