Parents of Kids with Extreme Special Needs-- What Do You Do?

I am in the opposite group. I was told I would have a child with special needs, but didn't. However, I was as worried as anything and like you did my homework. I do however work with special needs children and let me tell you this, they are the most precious gift and I am honored to work with them and admire all of the parents. It is very normal to worry about this, I worried about my other child, too while I was pregnant. No matter what that precious life will fill you with wonder and love no matter what he or she is.

If you're asking about the monetary side of things and how you will function in your household... having great medical insurance and a really strong support network within driving distance of you does wonders.

My daughter is not in diapers, but she is almost 10 and was diagnosed with an autoimmune disorder that causes brain swelling and behavioral issues at almost 9. So for less than a year we have KNOWN what was going on with her, but before that, we didn't know and had no resources. Scary truth, but there it is. When she wet her pants at school, we took her clothes and comforted her like any child (though usually one of a younger age.) When she kicked me in the face and screamed and tried to run away, I searched online for ways to safely restrain her with my body so neither of us would get hurt. And when worst came to worst, she was in an outpatient psychiatric facility for 11 days.
We used up all DH's sick leave, I stay at home, we went from psychiatrist to psychiatrist, to neurologists, to Children's hospitals, and spent hours each day searching for answers online to what MIGHT be wrong. We brought lists of tests to our pediatrician for him to run, we sought out alternative therapies in Chiropractic, Nutritional Response Therapy, Bio-feedback type things, etc.
We asked family and friends for help. One friend came and cleaned 3 nights a week for me for pennies and trades (baby items, etc.) My mother-in-law would stay over 2 nights a week to help me catch up on dishes, cooking, and laundry and watch my younger daughter so she would have some one-on-one attention too. Every day was a doctor appt. Every night were tears on the pillow after we FINALLY collapsed from exhaustion.

It's not pretty, but even in the throes of it ALL, the total worst of it, I was thankful that she was FUNCTIONING on some level. That there was some hope. It took me 9 years to find ANY answers for her, but some people get the answer on day 1 and it's not good. I'm lucky I was dealing with something that was mild enough for 8 years to not have an immediate diagnosis!! Sure, it was torturous at times, but still! Nothing critical. You find your way. You find online and real-life communities, you learn to find great doctors and therapists, your life changes as your priorities change and you lose some friends and gain others.

You adapt and change and find your way through the experience of it. There is a reason behind everything and you learn from it and love your child and live day to day, just in a different way.

I hope this helps some, but like the others said, you are probably worrying for nothing. Take care of yourself, eat organic foods, stay away from chemicals as much as possible, rest as much as you can, and try to meditate to get rid of some stress and you will both be healthier and better for it.

-M.

Honey, forget about this. Don't borrow trouble, even if your baby is perfect at birth, the maybe's will come if they must and you will love that child just the same. What you are asking is how do we live with disappointment and give up on our expectations. We don't. We adjust to our realities and see that what we signed up for was just love, nothing more or less. What we get out of it is the same, even if it is not physical perfection or gifted virtuousity. Most realities are somewhere in the middle anyway.

Some babies will have issues from the start, but many will seem fine for months or years and we love them like we love babies. What you are missing is that children with disabilities are more like typical children than they are different. They are children, not tragedies and if your child is challenged, you will know the sting of fighting to let them be children and they will show you the way.
You only need to open your heart and your arms, the rest of the story is not in your hands.

Love your baby today, tomorrow you will love them the same, matter what it brings.

M.

Please try to enjoy your pregnancy and relax because this time goes by so fast. Do your best to occupy your mind with things that make you smile and as soon as a thought of the "what if's" enter your mind, quickly do something to get your mind off of it. I work with young with children with special needs and from my observations, it is all in how their parents view it. There will be challenging times, but that will be no reason to love them any less and to do your very best as a parent. Embrace your child no matter what and know that there are resources as well as support that will help you along the way.

Please don't spend your pregnancy worrying about all the things that can go wrong. worrying about it will not help at all. All you can do is pray for the best and that you have a healthy child. Which I'm sure you will.
You know, I bet those parents who are facing those challenges love their child just the same as anyone else and that is what keeps them going. I'm sure they look at their child as a blessing despite the challenges. That's just how parents feel about their children.

it sounds like you are worrying about something that is so slim of a chance and not something you have been tested for, that you seriously need to stop yourself right now from worrying.

When you have kids, you can not buy trouble - you have to just take what is given to you and go one day at a time. You may end up with a child that is perfect, or not. Until you get that child there is NOTHING that you can do to prep for it. Seriously, each situation will be so different even with the same disease or with no disease.

Stop stressing.

You deal with it as best you can.

I think your fears are normal. Most likely unwarrented, but normal. I have a very good friend with an extremely handicapped child who wasn't supposed to live past age five, now 16. I have a daugher the same age. They absolutely love her and get great joy from her. She now lives in a residential home after many years of caring for her themselves. It was a genetic issue, so they adopted a beautiful daughter that they love and cherish as well. I guess my answer is that you take what comes your way in life, and cope the best you can. Even if your child is born normal, you never know what life will bring. Have faith that it is what is meant to be and don't let worries take over your mind. Enjoy right now. The fun of being pregnant, etc.. Good luck. If you keep experiencing extreme anxiety, talk to a doctor.

M., no one can really answer that question, becasue each special needs kids needs are different. If you have no cause for concern you have to stop thinking about it. You'll deal with any challenge that come your way. If your child was born "normal" but found out they needed heart surgery, eye surgery right after birth, you would deal with it, right? Same with special needs. We all have some form of paranoia when we are preggers, but please let it go. You and baby are fine.

The best thing you can do for your baby is to relax. All your stress hormones will effect the fetus. Put this stuff out of your mind. Go for the ultrasound testing at 12 and 20 weeks to reassure you that nothing is wrong, but please, stress is not good for developing babies.

With that said, I totally understand. It's a worry that I'm sure crosses most women' minds, especially those of us of a certain riper age. My husband had a clear plan in his head: if the tests showed sever developmental issues, we would abort. I, otoh, had no plan, and I definitely wasn't going to abort a 12 week fetus!

At the 12 week ultrasound, we did find out my son had a kidney issue. We then had to keep going back for ultrasounds until I got sick of going! As my pediatrician said, we can't do anything about it until the baby is born. I was planning on homebirthing, and after talking to my pediatrician and midwife, we agreed that there was no reason to just continue our course of action. After my son was born, we then went for testing when he was a week old. At 4 weeks he had surgery, and he will have surgery again when he turns 1. I shed some tears, but mostly, I took it all as it came and then went with my heart.

If there is something wrong with your baby (don't know your age, but you might want to figure out statistically what the chances are! it might ease your mind some), you will know what to do.

you never know when your kid is going to hit his head and get brain damage. you need to calm yourself down. Moms worry about their kids all the time. there is only so much you can control. all i know is worrying is raising your cortisol levels (stress hormone) and that cant be good for the growing baby inside you so calm down. there are things you have to realize are out of your hands