How Nathaniel Fits Into His Large Family
By Sibbi Yarger
Nathaniel is our son with Down syndrome. He is the child exactly in the middle of all the children. The moment he opened his eyes and looked up at me at birth, I knew he had Down syndrome. He was bright and alert, yet his eyes were different from all my other children.
The first day was a whirl.. I knew he had Down syndrome, but the obstetrician and my husband were not so sure. But then the pediatrician came in to see me within the first 2 hours, carrying Nathaniel in her arms. Her first words were, “There are a few special things we need to discuss about your son.”
She went on to explain and show me what physical characteristics of Down syndrome she noticed. She asked if we could do a blood test to check her assessment and explained that we would need to do an ultrasound of his heart as many Down syndrome children have heart issues. Then there were the first phone calls to family and friends announcing Nathaniel’s safe delivery and sharing his unique differences.
The phone calls were the hardest. In my own heart and mind I felt ok. Nathaniel was strong and healthy. He was a cutie, even as a newborn. I knew the Lord had created him as he was for a purpose and there was no concern even from that first day, if he would fit into our family.
Being he was our 7th child, I figured he would just live life with us and we’d adjust to his differences. Really, I felt ok with it all. But repeating the simple words, “and he has Down syndrome” over and over on phone to loving family and friends brought tears and strong emotions on both ends of the phone.
On the way home we decided to discuss Nathaniel’s “special-ness” with the children. With all honesty I shared with them, “There is something about Nathaniel you all need to know. He is fine and healthy, but he has Down syndrome. There will be some differences as he grows up.” My oldest son, remarked, “ Oh, is that all! We thought there was something really wrong with him!” And with that, our family was one child richer, and his life and place in our family firmly established.
Now about our future family size….
My husband and I made a decision after Nathaniel’s first few days home about our family’s size. We had left our family’s size up to the Lord. He blessed us with 7 beautiful children; Nathaniel was now the youngest.
In my heart, I knew even in Nathaniel’s early days, we would have more children. I wanted more children. I didn’t want our family to stop growing if the Lord had other plans.
I wanted the older children to know that just because Nathaniel had Down syndrome, didn’t mean that other children I would give birth to would also have DS. We also knew that Nathaniel would do better with younger siblings, learning and developing around him.
By God’s grace, we ended up having 4 more children. No, I did not participate in any pre-birth testing to see how my pre-born babies were developing. If there had been a problem, I would have carried the pregnancy to birth anyway.
Besides, we had already faced an unexpected issue at birth when Nathaniel was born. The Lord certainly carried us through that surprise. Of course our obstetrician and nurses advised the testing, but I was firm. Never done it with other babies. Besides, it was unnecessarily intrusive to the baby and me.!
We were blessed! Our next children were twin boys. Nathaniel tended to follow their developmental timing. He sat up with them, learned to walk after them, played alongside them and watched them the most. In general because we have so many children, I have not really cared about the timing of each child’s developmental milestones; I just noted when each one was.
Nathaniel’s milestones came much later than most of the children, but with younger children about, it wasn’t so noticeable. He had the freedom to develop at his own pace and no one worried or rushed him. He is always just one of the younger kids.
Nathaniel Becomes Deaf
We had two periods of health trouble due to his low functioning immune system. He was in the hospital 2 weeks after his birth for sepsis, an unidentified, systemic infection. He went through a pretty normal regime of treatment for that and went home without further incident.
But at 15 weeks he was fighting for his life with bacterial spinal meningitis. He was hospitalized for 2 weeks and went from seizures, to intensive care, to normal care to home. The meningitis brought some lifetime changes. Nathaniel is deaf and has additional mental issues resulting from it.
I guess my hopes and dreams for Nathaniel really changed after the meningitis. At birth I knew we would have some things to do differently than we had done with the other children, but with the deafness and mental issues not yet clearly defined, I knew things would now be considerably different. On Nathaniel’s first day, the geneticist had assured me that he would be able to homeschool and that he would probably thrive in that environment of one-on-one instruction with things geared to him. I already had the hustle and bustle of life happening around him all day, every day. I had pictured him growing up with all of us hustling and bustling around him giving him lots of stimuli which would help him. He would be surrounded by the piano practicing and the singing of his older sister...the activity of schooling... the soccer games and all the normal family stuff happening with him a part of it all.
Now, it was different. He would not hear music, all the before bed chatter and the first morning talk of his older siblings. Neither would he hear all the little things said to him as the children passed him in their play. How much would he would learn? Or understand? I had no idea how this Down’s stuff, and the deafness would play together in his life.
School and Therapy
Although I really wanted to homeschool him, just like I doing was the 5 older children, I felt I needed to send him to school because of his deafness, Down syndrome, routine-oriented personality. Our life has order, but not a set routine.
No matter how hard I tried, our routine never remained “set”. I did not have enough background to know just how to break down educational goals into the small most elemental steps he would need. I did not have enough command of ASL to teach using it. We thought that the state school for the deaf would be the best place for him to spend his school hours. He is not a residential student as most are, but just goes to school during the day and is with us the rest of the time.
He is now 18-years-old, but much younger mentally. As in any group of children, there are many Down syndrome young people that can do much more than he and many who do not get along as well as he does. He will graduate from the Colorado School for the Deaf and Blind the end of May this year, and enter their transition program in the fall which will be the avenue we use to try to find the right fit for him in the adult world of work.
Nathaniel at home...
He sleeps in the “boys’ room” which, right now, has 4 young men in it. This arrangement is more difficult for the other boys as Nathaniel can be very “vocal” at bedtime. He makes all kinds of sounds, squeals, laughter, and different noises in his throat as the others are trying to sleep. Since he does not hear the noise he is making, or the silence around him, he does not understand that this is not the appropriate activity for the time or place. Sometimes one of the boys will go sleep in the guest room, or living room. It’s a frustration for them, but they make adjustments and life goes on.
All our children interact with him and help him. Some work better with him than others. As the children get older they figure out how to interact with him better. I have found that by the time they are 17, they really understand Nathaniel and have established a unique relationship with him. I have also found that the family members with more playful temperaments do the best with him. Nathaniel loves horse-play or wrestling with his brothers.
We tried to teach Nathaniel soccer, but he did not understand “team play” and would sit down when he wasn’t in the play. He also did not like running up and down the field. He likes racing, or running ahead when he shouldn’t, but doesn’t understand its importance in sports. But he is a powerful kicker! If there was a designated kicker in the game, he would be the one to call upon!
He enjoys Disney cartoons on TV, but not people programs. He always has a “slinky” with him and plays with it, but he also loves all kinds of balls. He is an amazing ball-handler. He throws right to someone, sometimes using his peripheral vision to throw which means he may not be looking right at his target and catches them off guard. He enjoys shooting baskets with the basketball and has found his preferred distance and can “swish” it most the time. He loves to run and can throw a mean Frisbee, but his accuracy with a Frisbee is not nearly as good as with a ball. He loves the water and swims using his own version of some basic strokes. He enjoys working simple jigsaw puzzles and bowling games on the computer for short periods of time. Any game or activity that can be done at an elementary level, Nathaniel can enjoy if the others are willing to help him, be very patient, and not expect him to stick with it long enough to finish a game.
Nathaniel is a natural “picker upper”. He will come into the house from school and pick up the things that don’t belong in the living room or family room and take them right where they belong. He makes his own bed. He goes to his clean clothes basket and take his socks out and put them away. Sometimes he puts all of his clean clothes away. My only problem. is that he doesn’t discern if they are dirty or clean! He clears the table after meals and can empty the dishwasher.
If we are working on a project as a family, we try to give him jobs to do with us. He is very strong, and very willing to help, he just does not have the attention span to work until the job is finished.
Where the family goes, Nathaniel goes. He can get in and out of our family van and fasten his seatbelt himself. I don’t always take Nathaniel with me, as long as there are siblings at home. Someday I will probably have to make arrangements for respite care for meetings and activities where Nathaniel ‘s presence would not be appropriate.
He enjoys people and thinks everyone is his friend. Yet he is not always aware of appropriate behavior with people outside the family. He could easily be taken advantage of. He is not aware of dangerous situations, and doesn’t understand that a car can hurt him, or that running off or ahead of everyone else could cause him harm. We are pursuing Legal Guardianship for him.
No, we will not ever be “empty-nesters” and only the Lord knows just what our lives will be like as all of our children grow up and move on. Trusting the Lord for the future, is proving to be quite the adventure!