I have written a post on Mother’s day about five awesome special needs moms and Diane was one of them. She described her life with Nathan a little bit in that article and today, you will learn more about their story. Their extraordinary life of Down syndrome with Autism.
Related post : Luxury on Mother’s day…our special needs moms deserve it
Me and Diane
Let me bring you first to the time when we were younger. Diane is my sister and we have 4 years in between us, so basically we have plenty of times growing up together.
We went to the same schools from elementary, to high school, until university. As little girls, our mom would sew us the same clothes, like we were twins. I think she would wear hand-me-downs from me as well.
When she graduated from the elementary, I graduated from high school.
Because I did another four years in medical school, we shared the same dormitory when she enrolled in Nursing. Would you believe, she was more determined in reviewing her lessons than me, she would stay up later at night than me.
But of course, even if I slept early, I would wake up in the middle of the night or early the next morning to catch up on my review. I guess we just have different ways of studying.
She got married earlier than me and went abroad earlier as well, so later on, we just saw each other a few times every few years but of course, the bond will be always there as sisters.
Okay, off to their story, the real story of this blog.
I’ll be repeating some questions from the previous post but this is just so you will understand more if you were not able to read the other post.
Tell us about yourself and your family.
” My name is Diane, a post-op surgical nurse, married to an OR nurse, with two kids.
I was 42 when I had Nathan, who was diagnosed with Down syndrome at birth and autism at around 8-9 years old, although he already showed early signs like losing his words at around 4.
Joanne, my eldest is now 25 and Nathan is almost 14. “
Did you know that Nathan had Down syndrome when you were pregnant?
” I didn’t believe right away even though it was 25 % + in my blood work because two of my friends were 25% + and gave birth to healthy babies .
Also, series of ultrasounds didn’t show any sign of Down syndrome .
My specialist wanted to do amniocentesis, but I declined.
Of course, he was not happy of my decision, but he can’t do anything if it’ll show that my baby has Down syndrome.
I’ll just be in pain and there’s a possibility of losing the baby. He was slightly annoyed because he can’t convince me.
I told the doctor that whether my baby comes out with congenital defects or Down syndrome, we would still accept and love him.
And that’s why I chose his name to be Nathaniel because it means gift from God, according to the book of baby names.”
How did you react when you learned that he had Down syndrome at birth?
” When Nathan was born, they told me right away in the delivery table that they will test him for trisomy 21 because of the typical upward slant of his eyes and the straight line on his left hand.
I gave my permission, but I was in denial because even though I have a sister with Down syndrome, I heard from old folks that the possibility of having another Down syndrome in the family will come in the next generation.
I was told that day that the result was positive!
My pleasant day turned into silence of worries.
Our eleven year old daughter was in school.
My husband was not yet back from the Philippines. Two weeks prior to my expected delivery, his sister died suddenly and I let him go to pay his last respect.
And we moved temporarily to my sister- in-law while he was away just in case I needed help anytime.
I made an overseas call the next morning to let my husband know that I gave birth already. I also told him that our son was diagnosed with Down syndrome.
Another moment of silence on the other end and he flew back right away after his sister was laid to rest. “
Was your pregnancy with Nathan the same as your first?
“ My pregnancy was wonderful. I felt so good and energized after 11 years of trying. Was it because he was a boy?
On my girl who was my first one, I had these horrible feelings all day long for 7 months. I just couldn’t understand what’s going on with my body!
That’s why it took me 5 years to forget my first pregnancy.
I even had postpartum blues – I would suddenly burst out crying loud without any reason when it was only me and my baby at home.”
After diagnosis at birth what happened next?
” There were a lot of struggles from the beginning of Nathan’s life in the outside world.
My mind started to get pre-occupied with things that needed to be attended to everyday.
For a few days, we had to go back to the hospital for more tests that I don’t remember exactly now.
I knew we made appointments to his new pediatrician, cardiologist, urologist, endocrinologist, and geneticist.
Those were quite overwhelming!
There were back and forth appointments almost every week to see his different specialists.
Then we were referred to government agencies who evaluated him in their offices and we were also interviewed at home by their own coordinators.
Physical therapy started when he was 3 months old followed by Occupational therapy, then Speech therapy when he was a little bit older.
They would come to our house 1-2 x per week and that would depend on their evaluation and assessment.
We were just so thankful that we all have those supports. “
How was Nathan’s early development?
” At three years old, Nate was placed in the school system so he can socialize.
But before that, I was advised to put him on a daycare.
I found a nearby daycare that I like, but one day during pick up time he was eating his chicken nuggets and he got choked.
We had to do Heimlich maneuver till it got dislodged.
His first 2 yrs in prekindergarten was very exciting. Nathan enjoyed his class.
He knew about more or less 100 words at this time.
He liked to say “hi” to everyone, he was the greeter of the class. “
You said Nathan was diagnosed with autism at 8-9 years old. Can you elaborate on this?
” When he was four, he had flu shot for the first time per his doctor’s advice and encouragement because I was very hesitant for him to have it.
He got sick for about a week with slight fever after the needle.
And we noticed that he stopped talking.
He couldn’t even identify the pictures in the flash cards.
I was so angry with the doctor !
I called the clinic to inform them about the reactions that I noticed in him.
It took about a year before Nathan got 25 words back from the flash cards, even if he was on speech therapy in school.
Since then until now, Nathan doesn’t get flu shots anymore.
( As a Pediatrician, I always convince my sister that this is not due to the vaccine, but only coincidence that Nathan started showing signs of autism during the time of the vaccines. )
At his annual checkup when he was 6 years old, we were told that he’s due again for booster vaccinations.
Again, I was worried that Nathan will react to these 4 vaccines that they will give him. The doctor gave me assurance that they are different vaccines this time and there’s no evidence that these vaccines can cause autism.
Nathan had overt signs of autism at this time- he liked to isolate himself, loved to wiggle his socks on the air after he removed them, circled our living room, and enjoyed rocking for hours in our recliner/ rocking chair.
We moved the chair to our garage & he would still visit and rock himself there even without light.
The doctor further said that the person who made the article about autism as caused by vaccination was already in prison for giving a false statement to the public.
I was convinced of course, knowing it’ll protect my son for any future ailments.
And once again, he got sick for about a week and the more that he didn’t talk .
His behavior got worse as well.
He would always pull our hair, couldn’t follow simple instructions, pinched us all the time, including his teachers and other kids in school.
Another therapy was added, it’s behavior therapy this time and he was about 7 years old then, and done with physical therapy at 6 years old.
Thank God, Nathan got better gradually and he also got bladder trained around 7 years old.
It took awhile for him to be officially diagnosed with autism because our insurance stopped paying fully when he was more than three and it was so expensive to see a developmental pediatrician and other therapists.
So I have to look for a doctor who did not charge very much because we were spending from our own pockets. “
What are your fears for his future and how are you preparing for this?
” That’s always in my mind because he’s my son . Sometimes I worry because he’s not that independent and he has only one sister who could help him in the future.
So, we already signed some papers in the government agency that Nathan can live outside his family if he chooses to be independent someday.
This is part of government benefit here in our place and we are thankful that they will help in taking care of him.”
How is Nathan at present?
” He has only around ten words that he says constantly and he’s basically non-verbal but he can express himself in his own way.
He goes to a Special Education program everyday for 6 hours and he loves it!
He wakes up in the morning without struggle, eats his breakfast, brushes his teeth and off he goes.
He usually takes a bath before bedtime.
Nathan loves to eat anything especially chicken or any meat for that matter.
He scoops the meat first on the table and eats the veggies later. If he is alone in the table, he will grab all the meat!
He doesn’t like whole fruits though, so I blenderize them, 3-4 kinds at a time, all fruits, no sugar or milk, so I always put in banana to sweeten the taste.
Nathan still does behavior therapy at school for 15 hours per week.
And he has improved a lot!
He does not isolate himself anymore in the corner, no more shaking of his socks in the air, no more biting, pulls our hair less frequently, and less circling and rocking.
Nate does seasonal sports in school like basketball, as well as weekly music and dance therapy.
Outside of school, he loves to swing at the park and swim. “
Do you have some advises to moms out there on how to take care of their special child?
” Be a friend to your special child, explain everything that you do so they can follow whatever you are teaching them, they will learn eventually though slow, of course.
By repeating things, they will be able to recall in due time.
Praise all the time, they usually like the positive and happy approach.
I tickle Nathan when he does not follow quickly whatever I tell him.
Don’t hurt them, just be patient and calm, with a happy tone plus explanation then they will eventually follow.
Teach them how to be responsible, like let them bring their own clothes or socks from the closet when they need to change.
Or let them bring light grocery items from the car to the house and their backpack to the car when going to school and when getting inside your home from school.
Most of all, give them lots of hugs and kisses, that way they will feel your love and care. “
What has been your biggest challenge in raising your special child? Please share your story with us.
Originally published: May 28, 2019 Updated: July 29, 2020
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