I hope this touches your heart as much as it has mine:
Autism Night Before Christmas
by Cindy Waeltermann
Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse
We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract
The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head
Did I get the right gift
The right color
Would there be a tantrum
Or even, maybe, a smile?
Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.
“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack
We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side
We know what it’s like
To live with the spectrum
The struggles and triumphs
But what they don’t know
And what they don’t see
Is the joy that we feel
He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!
He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!
Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope
But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride
We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,
But what they don’t know
Nor sometimes do we
Is that children with autism
We don’t get excited
Over expensive things
We jump for joy
With the progress work brings
Children with autism
Try hard every day
That they make us proud
More than words can say.
They work even harder
Than you or I
To achieve something small
To reach a star in the sky
So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you
That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.
You will realize
What it is I go through
And the next time you judge
I can assure you
That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned…….
We are climbing some “mountains” right now. I haven’t had a minute to breathe deeply, let alone post a new blog. The above poem touched my heart deeply. I hope it touches yours too. We are trying to “regain” some ground, regressions are the worst. Knowing and trusting it shall all be well soon. Blessings from my home to yours! And almost, “Merry Christmas!”
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.
I had the idea to check out private Christian schools with an aide. But the real revelation was a label was definitely not a one size fits all tool. Reality was that Lee might fit the diagnosis, yet not all the specialty schools might not be for him. Again, I found myself ever unsettled. What were we to do?
I had eagerly hoped once we had a label/diagnosis that life would be some new-found bowl of sweet cherries, pitless ones of course. And still, there were dead ends. So as Sophie’s delivery date grew ever nearer, Pedro and I began the “fun” repetitive arrangement of school tours. This time, we were looking to see if Lee would get lost easily; how many hours an aide would need to be with Lee; and how he would fit into the school population.
At a couple of schools the feeling Pedro and I got is they were not really thrilled at our situation at that time. They were not totally opposed, but they were inflexible. So again, we decided this was a no go.
Just before Sophie was born, we eagerly checked out the closest Christian school to our house. They were establishing reading tutoring. They seemed to be doing lots of background work for us, which was a real plus.
Sophia was to be induced at the beginning of May. I thought the fourth child would just ooze out. I hated sneezing at this point, I thought she might just pop on out. But hark, her long -awaited spontaneous arrival never was and we were induced. The week of the induction was particularly surprising as my wonderful OB-GYN thought she should thoroughly ultrasound me to make sure I was only pregnant with one baby!
Pedro was very on edge, wondering if somehow we had missed a little bundle of joy in there somewhere. But oh-no, she only found our one, Sophie, in there. She measured Sophie at 19 inches long and 6lbs and some ounces. She was still puzzled at my girth. The whole experience was a great big sarcastic plus for my self-esteem.
But as Sophia was induced, I tried extra hard not to think of the future, to just enjoy our last baby and not think of the loose ends that loomed at home. Sophia was no six pounder, she was almost 9 pounds and 20 inches. I am just glad she got here okay.
Upon coming home, I had forgotten that I had scheduled some in home observation for Lee. So Sophia was just days old and here were a couple of professionals from the autism specific clinic to start a behavior plan for Lee.
Lee’s behavior plan isn’t as intense as some kids on the spectrum. For those who are combative or extremely self injuring: they may have a behavior plan that includes holds for care-givers to use on the children to keep them from detrimental consequences. Lee’s so far have been reward-based behavior plans. The sort that motivates Lee to make even better decisions.
The only problem I have had with them thus far, is that Lee is a perfectionist. On the days Lee has had outbursts and meltdowns and I need to take his reward away, he gets even more violent. Soon I hope we are able to make a new plan and hopefully this concern will be addressed.
Lee that day also met a wonderful influence on his life. Not only did the behavioral therapist observe Lee he also met his one on one coach. She was going to do some curriculums with Lee over the summer to help him through school. They went over such skills as overcoming being bullied, he learned the 5 point anger scale, he worked through some anger calming techniques, and learned what things made him lose control most. Later, on another blog, I will share the list of what sets him off. I was shocked in a positive way, that this coach could get such clear information from him. What a miracle!
The other thing Lee would do this summer, was “play” with a peer for an hour a week. The coach was there to oversee their intermingling. Lee was at first opposed to all this, but he quickly liked it. I still had education set up for fall at this center, in case it was the best I could come up with. But there would be little to no social interaction there, so I kept plodding on.
Lee also would do inner-active metronome this summer. It is an Occupational Therapy service that helps the kids processing, balance, timing, and coordination. Lee hated the metronome, but we saw outstanding results from it, so we kept pressing on.
Through all the therapies, I never felt like I was trying to make Lee “typical.” My aim is just to equip him the best I can to be useful and independent as an adult. I know Lee will never be “typical.” But again, what is “typical?” I see a little autism in all of us. I have sought my heart long and hard. I do figure if I was in school today, I probably would be in a resource room getting extra help.
Some of the things they now call sensory processing problems, I know I had. I hated to get dirty, hated certain textures and consistencies. I refused to wear corduroy, which being a 70’s baby probably made it hard for me to be clothed. Learning and socializing did not come easy to me. I was bullied a fair amount and made fun of. My coping mechanism was to make it fun to make fun of me so instead of crying about it, I would either chime in and make fun of myself or I would antagonize the comments. I figured negative attention was better than no attention at all.
I do not think Lee and maybe not Matt would have the where with all to cope in this way and I am not sure it was healthy for me to respond like that. So I have tried to equip Lee especially to handle any bullying in a healthy way. For some reason children seem to stealthfully sniff out the weaker.
I do therapies in the hopes it will make the boys roads less “bumpy.” Anything to ease their journey, is my aim. I hope one day as other moms have told me will happen, they will thank me. But if they don’t, it’s okay. I know I have done what I have felt is best and that is all I can do. I have a few acquaintances that are totally opposite of me. They see therapies as trying to change their kids. They have a “take him as he is mentality.” I can understand. But I know me, I know I couldn’t sleep at night without trying. We have seen progress, so I keep on keeping on. Our lives are full and scheduled at times, but well worth it. I know as the kids get older, the therapies will decrease or change to more “age-appropriate.” But for now, I’m holding on and keeping consistent. OT and speech therapy have made all the difference in the world. I am eternally grateful!
So we kept interviewing at Christian Schools. But the one closest to us was still at the top of my hopes and dreams. I began telling people, Lee will attend the Christian School down the street. We just needed to meet with the administration. That would occur when Sophie was about four weeks old. Time was going by way too fast.
A great help to us has been the scooter board. The scooter board is pretty inexpensive. We have used it for just your typical free play, but mostly we have used it for work. Lee has had to “swim” on it on his belly to pick up speech therapy cards and put it in the right bucket of the sound it makes. We have used it for “heavy work” so he could concentrate more in school work. We have used it help calm him after a meltdown (often getting moving and in a different vibe, makes all the difference).
Jonathon was now getting many “therapies” and “interventions.” They included: vision therapy, speech therapy, OT, and reading intervention/tutoring. Life was full. Josh at this point was getting speech from a lady that came to our home, great joy, her coming to our house.
It was almost Christmas and there was a general buzz around our house, “Was number four, a boy or a girl?” At every infomercial both boys would insist that we needed every single item today. Homeschooling was going. Church was growing and good. All was calm, all was bright. Except trying to decide where we “to go” since being at the neurologist with Johnathan.
Josh was not only getting speech therapy for articulation, he was getting it for oral-motor help too. Josh was two and still drooled like a tiny baby especially when engaging in large motor activities. But he remained our happy, gleaming little boy. He spoke often in a “strange” language and we weren’t sure where he was coming from, but he always smiled and giggled. Except, when no one could understand him and he really wanted something.
I remember standing in the kitchen almost daily to several times a day, lining up boxes waiting for him to gesture as to what he wanted. We did the same thing with toys and clothes and… well, you get the picture. He started scratching at his clothes, complaining they hurt him. After being through the same with Jonathon, I just gave the clothes he did not tolerate well away. I learned with Jonathon, once he had a bad feeling with a certain item, there was almost always – no turning back.
We were getting along. On Friday, December 19th, we were just getting ready for the kids break from the Virtual Academy. Jonathon had been to a therapy. I was coming home with him. Upon opening the door, I saw Jeff. He looked pale and concerned.
Jeff is the rock of our house. He never worries. Nothing phases him, at least he does not show it. He tends to be the quiet one. With all this, with the boys, he typically says very little and will offer a, “It will work out” or “We will figure it out.” – every now and then.
But upon this Friday, he seemed to look gray. I knew something was not right in an instant. “What is wrong?,” I called. Jeff took me in the kitchen and whispered, they want us at Children’s Hospital in Neurology first thing Monday morning. I began to wonder, “Do we pack clothes? What is going on?” I called the department, leaving messages. No one wanted to be contacted late on a Friday afternoon. I finally talked to the doctor’s nurse, it was about the blood test. She said I did not need to pack clothes. (Relief, a little…)
All weekend, like a toothache, this uncertainty tried to pop up and there was a dull pain. We kept going. Through this whole process, I was all over the place on the inside, but tried to keep a solid front for the kids. Jeff got my rants and raves.
So Monday morning we went. I remember it was very cold. Walking up to the clinic felt cumbersome and alarming. I stared at every child wondering if that would be us after they told us what was going on. And then it came, we were taken back and they broke the news.
The news I will not completely tell here. I do not want to embarrass the kids in any way with this blog. All I will say, is that I thank God we had BCMH funding during this time. BCMH stands for the Bureau of Children with Medical Handicaps. I had obtained it for the diagnostic testing, for neurology and maybe the autism clinic if we needed that. The blood test they did cost somewhere around $5,000.00. Our insurance will not even touch genetics. Now when the insurance company got the results from Jonathon, they wanted me tested immediately, only because I was pregnant. My testing came back fine, thankfully.
Anyone, with a child, up to age 21, I think, can apply for BCMH funding. It is completely awesome for testing. The BCMH will not cover mental conditions, such as autism or down syndrome or even genetic conditions. But for children with medical conditions, I feel like this is a God send for Americans. It was a God send for us, just using it for testing. From what I understand, anyone can use it for diagnostic tests, even for genetics. How wonderful.
What we were told, that I will share, is that Jonathon had a very rare finding in the genetic field. Apparently, the testing I had while pregnant with him, did not pick up on it. Either way, I would have never ever ended my pregnancy with Jonathon. But anyway, it was only 5 years old as a diagnosis. The neurologists had found out about it on the internet!! There were only 4 diagnosis like it in central Ohio that they knew of, at the time. They told me Jonathon had a heart condition associated with the genetic piece. They told me many things and gave me print outs from web sites.
Well, three years later, we have been to genetics twice more now. We now know, thanks to new findings all the time, Jonathon does not have the heart condition. I went to a cardiologist in February of 2009, just to make sure and he confirmed it also. But the grim diagnosis we were given then, was not correct completely. I joined a group and followed others with the same diagnosis. I was so thankful, Jonathon was not on a g-tube, or with severe medical problems like many in the group. My heart definitely goes out to those families.
But that year, 2008, at that time, I thought Jonathon was very impaired. I thought his heart needed healed. I thought he would need teams of doctors on stand-by whenever he had surgery because of heart and gastrotology issues. But not any of these were the biggest blow.
No, the head neurologist came in after our genetic findings. She looked at Jonathon and said he is perfect. “Mom and Dad, I know the other doctor saidAsperger’s, but I completely disagree. Any strange behavior is related to this genetics testing. If he had the Asperger’s he would be hand-flapping, and being crazy. Your son is perfect.” She watched him walk and left.
I was devastated. Now there would be no special schooling. There would be no more funding. The well was dry in my world. I was very alone. Merry Christmas. The next day I was to find whether I was having a girl or a boy and now I would have to tell my “Gyno” that they wanted extra doctors around for delivery in case this baby was like Jonathon. Merry Christmas.
The Christmas of 2007 and 2008, my parents got me “Jonathon” books. Yipee! The first in 2007 were all books on Dyslexia. In 2008, books about Asperger’s. This was very sweet of my parents. They wanted Jeff and I to be the best parents we could be to Jonathon. It is funny when Josh was diagnosed, there were no books given. I guess, everyone thought we had enough.
But my favorite Asperger’s book is Parenting Your Asperger Child by Alan Sohn, Ed.D and Cathy Grayson, M.A. The best thing about this book is it describes the different presentations of Asperger’s. I found the book very interesting. My favorite section is on discipline because with this type of child, our regular style of discipline did not seem to fit Jonathon properly. I hope you like the book as much as I have. It would definitely help if you are wondering if your child could possibly fit with high functioning autism.