Parenthood definitely brings with it a lot of anxiety and questions, and many of them start long before childbirth. Will it be a boy or a girl? What will his or her name be? What if there are complications? One of the most difficult things any parent has ever had to hear is that their baby may not be as healthy and strong as they'd hoped. Special needs are a growing concern in this area.
Parents fear if their child has autism or whether their DNA results in Down syndrome. Later on Parents will worry about things like ADHD or whether they're dealing with a Sensory Processing Disorder. Whatever the diagnosis, having a child with special needs changes everything. It changes the child, the parents, and the future — whatever it may hold.
Even when a couple tries month after month with thermometers and an ovulation predictor kit just to get pregnant — it can still feel overwhelming knowing they’re bringing another person into the world. This is especially true when there is a special needs child in the family. What if it doesn’t go the way they are imagining it will? What if everything that happened last time happens this time?
There are risks with every pregnancy. Most women find themselves worrying about the pain of delivery, how long they’ll get to stay home on maternity leave, or if their doctor will follow their birth plan. Others are worried that they'll have another child who will be challenged the way their current special needs child already is. Considering more than 93 million children are disabled worldwide, it's a legitimate concern.
15 The First Time I Was Pregnant
This was easy. I wasn't expecting anything more than the latest copy of What to Expect...told me to. Of course, that book was the extent of my research back then, too. The first of most of my friends to have a child, I was a little out of my element and hadn't yet been exposed to the realities of parenthood through my peers. I didn't know what was to come, but everyone was excited and I was going to be a Mom.
I was far more worried about getting through labor without a c-section and which crib to pick. Naive? Perhaps, but it was all I knew. Aside from a brief infection that caused me to become dehydrated and hospitalized for fluids for three days, that pregnancy was easy breezy. I look back now wondering who was that woman? It's certainly not who I am now, but how could I be when so much has changed.
14 The Chances Of Having A Special Needs Child
It might not happen with the first pregnancy, but becoming the parent to a special needs child is enough of a challenge for many families to stop at one. For example, couples who have a child with Autism Spectrum Disorder are roughly 33 percent less likely to have another child than couples who do not have children with an ASD diagnosis.
It's not necessarily just the emotional and mental toll that this challenge presents. Rather, it's the time it takes to parent a child with special needs, and the money. Mean hospital costs incurred for children born with spina bifida just in the first year of life are $39,059. The average cost of raising a child with Down syndrome is 12 to 13 times higher than raising one without the disorder. The cost of raising a child with an Autism Spectrum Disorder is $1.4 million, and as high as $2.3 million if a co-morbid intellectual disorder is present.
There are certainly upsides here. You might’ve heard that special needs children are gifted; that they are extra-loving; they're creative and blessings in disguise. You know what? Some of them are. You might have also heard some of them have violent tendencies and impulse control issues. That’s true, too. The special needs population is just as diverse as any other and cannot — and should not — be grouped into a stereotype.
13 It Happened To Me
When I had my second child — my oldest son — developmental issues were the last thing on my mind. My first — the world's sweetest little girl — was only four months old when I got pregnant with my first boy. I was carefree. Considering his sister was the picture of perfection, how could anything possibly go wrong with him?
It turns out I suffered from a condition that many parents are fortunate to be afflicted with — the luxury of being unaware. I was blissfully ignorant to the life that lay ahead of me and what my role would be in it. Sometimes I think it was easier that way, but nothing has been easy about parenting my special needs child.
The road to figuring out what was wrong was so scattered with wrong turns and doctors who didn't understand that I can't fathom doing it all again. A day with my sweet boy is both exhausting and triumphant; it can be full of frustration and tears of joy all in one fell swoop. It's complex. It wasn't supposed to happen to my son, but it did. Getting pregnant again was a similar experience — one of tears, anxiety, joy, and anticipation, because it most definitely could happen again.
12 We Needed Adequate Space
When most couples think about when to try to conceive the second, third or fourth time around, it's primarily based on lifestyle and the age of existing little ones. Some parents prefer their children to be close in age while others want kids a little further apart. The special needs parent has a lot more to consider than how old their toddler and kindergartner are.
The fact is certain disabilities are more likely to develop in children who are conceived outside of a certain timeframe of their preceding sibling. For example, autism is 50 percent more likely to occur in children conceived less than a year after a sibling. Thus, Irish twins are often exactly what special needs parents are trying to avoid.
Waiting too long can also factor in with a 30 percent increased risk pertaining to children conceived more than 5 years after a sibling and 40 percent for those conceived 10 plus years later. While the age-factor certainly can't be ruled out, couples who already live their day to day lives parenting a child that struggles often worry that they need to get the spacing just perfect to reduce the risk of more developmental problems ahead.
11 Were Environmental Toxins To Blame?
It seems to be the trend for many people to get pregnant and focus on breathing exercises, doula choices and nursery paint swatches for the next nine months with little regard for much else. But for Moms and Dads of special needs children, the focus is much narrower and involves a lot more time spent digging through medical journals than comparing robin's egg blue and periwinkle.
When I got pregnant with my second son, I knew I was going to have to control what I ate better. That was easier said than done in some respects. That all day long sickness plagued me for months and I had a serious aversion to all things meat, but I did what I could to reasonably limit processed food — except for ice cream, of course.
I also gave myself some serious time off from housework while pregnant out of fear that too many household chemicals could be problematic. This might sound extreme to some people. It even does to me, but my experiences have made me this way. So, for those nine months, I relied on my family to pick up the slack.
On the bright side, my daughter learned how to get the shower glistening, and without the use of any industrial chemical cleaners.
10 What This Childbirth Was Like
A lot of special needs parents find themselves questioning the turning point or the event that must've been the catalyst for their child's disorder or disability to develop. Sometimes it’s impossible to pinpoint, but there's certainly no harm in educating themselves on potential pitfalls to avoid the next time around.
Childbirth itself could actually contribute to the development of learning and behavioral disorders.
Induction and augmentation of labor was shown to predispose male infants to a 35 percent greater risk of developing autism in one study. Since we know some children with autism may develop it as a result of opioid excess, Pitocin — the synthetic form of oxytocin used to stimulate labor contractions — could be the catalyst.
When my contractions stalled after 14 hours and we had to use Pitocin to bring them back because I was losing fluid and baby number three had to be delivered, you can imagine the distress I felt. There are even theories that epidurals and IV medications used during childbirth — being opiates — could contribute to the development of such disorders.
I'd be lying if I said that theory had no part in my decision to birth without pain medication.
9 Yep, I’m Going To Say It: Vaccine Injury
Here's the thing with vaccines — as it turned out, they weren't the best choice for my child. When my first son was born, it was during a time when debate over vaccine safety was in an uproar, and I understood very little about it. Everyone I knew vaccinated their children, or so I thought. So I did, too.
Nearing his second birthday, the doctor wrote off his lab results showing a high concentration of a heavy metal in his body. No one told me where it would go — into his bodily tissues and brain. No one told me this could cause swelling known as encephalitis that can cause neurological damage and disorders to develop.
In addition, no one told me the mercury, aluminum, formaldehyde and more in the shots could injure someone with his genetic makeup. No one told me his DNA would impact how well he could rid himself of these toxins. I suppose I should question why I was waiting for someone to tell me and not looking for answers myself. That came later.
Knowing our next baby would share the same genes and would be faced with the same risks, I knew vaccination wasn't going to be an option for us anymore. I didn't want to trade one illness for another, but the fact of the matter remained that the chance of a chronic and debilitating disorder was now much more likely to occur than any of the diseases vaccine aim to prevent.
This wasn't a decision we made lightly, but it's the only one we're comfortable with.
8 MTHFR Is Not A Dirty Word
That genetic impairment I was talking about? Meet MTHFR — short for methylenetetrahydrofolate reductase. This gene mutation impairs a person's ability to rid their body of toxins in an effective manner. It is not known exactly how many people are affected by at least one copy of it, but estimates range as high as 75 percent of certain populations.
The two main types are A1298C and C677T (the more severe form); having two copies of either is harder on the body than having one.
Diet is important when MTHFR mutations are present. If there was ever motivation to cut grains from our diets, it would be this mutation. The problem isn't grains as a whole, but synthetic folic acid that is added to almost all processed grains and some other foods.
For the MTHFR-afflicted, folic acid essentially blocks folate receptors and makes it difficult for the body to absorb naturally occurring methylfolate. This can and does lead to birth defects, like sacral dimples, cleft palate, tongue and lip ties, and spina bifida.
MTHFR is also a precursor to miscarriage, and because of my issues with such in the past, my midwife had the good sense to test me for this gene mutation — of which it would turn out I have the most severe form. It's hereditary; you get one copy of this gene from each parent.
Since I had two mutated copies, it's inevitable that all my children have it, too. With the third bundle of joy on the way, I felt prepared by taking the right vitamins and avoiding certain medications and vaccines that can harm people with MTHFR.
7 How Necessary Were My Ultrasound Appointments?
Who doesn't love a good ultrasound? Especially with today's advancements allowing us to see our babies taking shape in the womb so clearly that we might even spot dimples and hair before birth. But just how safe is it to opt for an ultrasound you don't need? This one worried me a little bit, admittedly. During pregnancy with my third, we found out the umbilical cord was missing an artery and this would require more ultrasounds than were typical. So I worried about things like cavitation and temperature increases that can cause birth defects and contribute to developmental disorders.
Ultrasounds have a time and a place, and outside of the care of someone trained to use these machines the way they were intended, they should likely be avoided. There is specific concern over keepsake ultrasounds since the facilities that provide these aren't tightly regulated and do not need to have obstetric experience to operate.
The FDA released a warning to parents about this in 2014 advocating for the use of ultrasounds only as a medical necessity. The warning also applies to dopplers. Many parents-to-be are unaware they can request their provider use a fetoscope rather than a doppler in the second half of pregnancy.
6 The Guilt I Felt
Unfortunately that blissful ignorance I spoke of is often followed up with a hefty dose of self-loathing and guilt. It doesn't feel all that warm and fuzzy to come to terms with the idea that a choice I made as a parent may have led to the brain damage my child suffers from today.
Sure, placing blame isn't productive and it won't undo what's done, but it will stick with me long enough to make sure I do all I can not to make the same mistakes again.
Then there's the other guilt — the kind that comes with deciding to have another child even though it means it will inevitably take some of your time, money and energy away from the child that is already here and needs you a lot. I found it lingered within me and sprang into action often, especially during a sensory meltdown.
The mission I'm on to help my son and try to recover him from this mess is the only solace I can really give myself, because convincing myself that I didn't contribute to this stopped working a long time ago. Dwelling on the past takes me away from the place my focus needs to be today — on my family.
My advice to other parents who are going through life waking up to special needs every day and wondering what they did wrong is to forgive. Forgive your child. It's not their fault. Then forgive yourself. It's not your fault either. Move on.
5 Choosing Our Family Doctor
When I had my first two children, I chose a pediatrician that was close to where we lived from the list of recommended doctors my OBGYN gave me. That was that. But having a child with special needs that so many doctors have failed to understand changed all of that for me. Boy number two would be seeing a doctor that I already knew was the right fit for us.
I took my time and explored several options that were recommended by friends and neighbors. I made sure I was going to take my child to a doctor who would support our choices and understand how we came to them without making us feel like silly parents or inferior in some way. Yes, bedside manner is important to little kids, especially those with advanced needs, so it's important to their Mom, too.
How refreshing that first appointment was! What a breath of fresh air to meet a doctor that lived up to both his credentials and his patient reviews. He's now the doctor for all three of my children and I go there myself, too. I'm not sure why I didn't think the person I entrusted with my children's medical care wasn't worthy of researching in advance, but I know better now — even if I had to learn the hard way.
4 My Worry Accomplished Nothing
Looking back on last year before I had my second son, I have no idea how I made it through some days without breaking down. Oh that's right, I didn't. Some days I had to break down. In the beginning, I worried about having another boy knowing that disorders like the one my son has occur so much more in males than females.
The ratio for autism alone is 4:1. I worried about MTHFR and congenital heart defects. I worried about miscarriage again. I worried about everything.
But since I'm that Mom whose career has probably made her prone to excessive research, I knew that kind of stress could also contribute to developmental problems, preterm birth, and miscarriage. Certainly, if the stress alone could be problematic, then I had to find a way to shut it off.
So I found an outlet. I canned vegetables, tried to become a painter, learned the art of extreme couponing, and spent all my spare cash on baby products for the rest of the pregnancy to distract myself. Hey, it worked and I highly recommend it.
Worry might be a normal part of pregnancy, but this kind of worry — the kind where you've been there, done that, and really don't want a rerun — can be crippling if you allow it to consume you. So I trusted my mother's reassuring words that this time would not be like last time and told myself that if she was wrong, I would be well-prepared for it. Will it happen or won't it? The only way to find out is to keep moving forward.
3 Preparing For A Sibling
Let's get real for a second about feelings. I knew how I felt. Dad knew how he felt. But how would the kids feel when we told them they were going to have a new brother or sister? How would our special needs child take the news that he would no longer be the baby and that he would have to share the attention he so desperately needs sometimes?
That's the beauty of having a child that's special. He was so elated. He couldn't stop smiling. He guessed before we could even get our full announcement out. It was one less thing I had to feel guilty about. He was happy and so excited to be a big brother, and has fulfilled the role beautifully.
Make them a part of the process. Take them to the ultrasound appointment. Let them hear the heartbeat, too. Have them pitch in on nursery decorations and get ready for their new sibling. “Special needs” doesn't mean they don't have the same needs any other child does; they just come with bonus needs.
2 What If It Happens Again?
The risk of having another child with autism is roughly 20 percent if the disorder is already present in a living child. The risk of having one child with Down syndrome and having another with it is 1 in 100. With most disorders, the risk is heightened for subsequent babies. I now have a happy, healthy 8 month old baby boy that is growing like a weed and learning new things every day.
I imagine this heightened level of anxiety I have isn't going away anytime soon, and that's okay. I secretly freak out a little on the inside every time he purposely bangs his head on the furniture and laughs. I'm trying.
When people ask why we haven't started solids yet, I kindly inform them that the research shows a baby's open gut may remain open through their sixth month and introducing solids before that could lead to leaky gut. They don't develop the enzymes they need to digest many foods like adults can until their eighth month.
Since this Mom learned her lessons the hard way before, she's taking all the precautions this time around, even if it means postponing seeing all his cute reactions to tart fruits and pictures of a spaghetti-covered face.
1 How I View My Experience
Our experiences shape our lives and having a special needs child certainly has made mine challenging, yet rewarding, and exhausting, yet fulfilling. Is he gifted? people will ask. He's smart as a whip and ahead of his class year after year, but because he can't maintain friendships with other students and gets upset easily over unexpected noises and textures, school is hard.
Yep, a special needs child sure does change everything. Some couples are afraid to even have another child knowing that the risk is higher for them that it could happen again. I don't look at it that way. So my child has special needs. I focus on the little boy that has challenged me, helped me grow, made me educate myself, and cultivated me into a better parent — a better person. He's not gifted. He is the gift.
Did you find pregnancy following the birth of a special needs child to be more difficult? What has your gifted child brought into your life? Let us know in the comments!