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. “
Related post: Big sister, Little brother- he has Down Syndrome and Autism
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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14 thoughts on “Down Syndrome with Autism ( My Son has both and he is a Gift from God! )”
Children with special needs are truly a divine gift. And they are born to parents who are ready for them (although many do not think so at first). They require a lot of patience, understanding, and adjustment, and a parent is happy every moment he sees his wonderful unique child progress. From a spiritual point of view, born into a body with Down syndrome and autism is an extraordinary challenge for the soul and all the respect and love to these brave souls.
Thanks for your nice words Nina.
It’s a great story to read and I feel that more moms and dads should share their experience of their kids who are born with a deficit.
I’m a social worker who worked with all kinds of different disabilities in adult people. I’ve always heard: oh, they are so amazing, always cheerful and so social.
And I think this image is not always correct. And it demises the struggle parents can have when raising their kid. Therefore, more and more people should come out with their stories to inform people. And I suppose it’s also great for your own process to write about your life as well ;).
Keep up the good work!
Taking care of a special child is definitely very challenging, so I say this again and again- I honor our special needs parents, especially the moms, like Diane, who offer unconditional love to their kids, and who can do whatever it takes to support their kids in every aspect of their growth and development.
You are right, not all people with special needs become cheerful adults and I believe, aside from how they developed mentally plus their physical limitations, how their parents raised them would be a factor, as well.
Thanks for reading!
This article definitely touched my heart.
I have an older sister who has Down syndrome and Autism. She is also deaf and mute.
Our mother caught German measles while she was carrying her. Coming from a buddhist country, Thailand, abortion was a not acceptable, even though our mother could have the procedure done but she chose no to abortion.
My sister, Fon (means rain in Thai) is 47 and she is pleasant to be around. Of course she has some good days and bad days, I do not blame her, she has difficulty communicating with us. It must be stressful. She can take care of herself really good, she never has teeth problem, I think it is the ocd that comes with it, she loves brushing her teeth and really spend time with it.
I want us all to remember that during bad days of our loved ones, crying or breaking anything, remember that he is a member of your family.
Deep down they know and they always look out for you. There was one incident when I took my sister to the hospital with me for my blood test, I couldn’t leave her alone so I took her with me and when the nurse approached me with the needle, she got so upset and almost attacked the nurse. She didn’t though, but that showed that she cares for me and always looks out for me.
Just shower them with love and try to understand them and you will be surprised on what they can can do 🙂
Our special needs family member really reciprocates our love for them, just what your sister did to you when you had your bloodwork in the hospital.
They also have feelings, just like us. When they’re happy, they laugh. When they’re hurt, they cry. And they can let us feel their love for us, even if they are non-verbal, like Nathan, who just smiles and hugs his sister and parents out of nowhere.
And just like you said, they truly need our love and understanding.
Thanks a lot for sharing your stories and experiences with Fon, your sister.
Thank you so much for this article about Diane and Nathan. I hesitated briefly at the beginning, because I was sure I would start tearing up immediately, but I made it through. The article was much more upbeat then I expected and I’m sure that speaks to the courage your sister has as a Mom.
I have some experience with special needs children and volunteer when ever I can to assist at the local Children’s Hospital. I have three healthy children myself and do everything I can to teach them how lucky they are and that they need to help those who need assistance.
Do you have any suggestions for those who may want to volunteer or provide help in some other way? I think many people would love to help, but don’t know how to go about getting involved.
Thanks again, Glenn
Happy to know that you appreciate Diane as a special needs mom to Nathan.
People like you who find time to volunteer assisting in whatever way to care for special kids are so honorable.
Of course, others like you can do volunteering jobs in local children’s hospitals or rehab hospitals or even in Special education ( SPED ) programs in the schools. They can apply online or maybe approach personally the SPED teachers.
Thanks for visiting!
It sounds like you have had one hell of a tough time going through your life but look at the beautiful smile on Nathans’ face!
You must be so proud of him 🙂
I have a 9-year-old son with autism and he can be quite difficult to deal with sometimes as he hasn’t long been diagnosed with it but we knew there was something different about him compared to his 2 older brothers
It has been tough on both my son and us as parents but we are all learning together what it all means and how we can make him feel like he needs to feel within the family
Will things get any easier for him?
I have bookmarked this website to be able to follow your blogs and your progress with your family 🙂
You are talking about Diane, my sister, and I will pass on your message to her.
I know how challenging it is to care for kids with autism and I really can’t answer if it will get easier for your son or how long, but as long as you as parents are there to support him and appreciate all that he can accomplish, that’s all that matters.
This website, theautismdad.com, can also help you a lot about parenting an autism son.
Always remember, our special kids are angels in our midst.
Thanks for reading.
I salute you Doc for this website. I really miss Pangga and Kuya Batch. In my five years with your family I saw the way you support and care for them.
I have become really close to them and everytime I see special kids like Nathan, who looks like Pangga, I do fondly remember them.
Our family misses Pangga everyday as well, and through this website we are able to bring back beautiful memories of her life. As well, we are able to share blessings to some special kids in Romblon, Philippines.
When you visit Banton, come to Romblon so you can bond with Batch and my parents. I’m sure they will be happy to see you.
Thanks for those five years that you shared with us, much appreciated.
Regards to Manang Gerry, Manong Maeng and the whole family.
This was such a heartwarming read. Diane is such great mother, and there are some excellent tips provided here. I actually didn’t know there were government programs like that, but they need to be more widespread. I think new mothers/fathers who have a child with down syndrome should take the “happy and positive” approach too.
Thanks for appreciating Diane as a mom. Being a special needs mom is really an honorable task.
It actually depends on where you live, like in North America, there are lots of support for special kids. Some are totally free while some depends on how much insurance coverage you have.
Be sure to ask your doctor or therapist, usually they know where to refer you.