Stories of Hope and Grace: Sarah, The Mother of A Special Needs Child

August 19, 2016

Editor note: Names have been withheld to respect the privacy of the family and children involved in this story.

My name is “Sarah. The reason I’m not using my name or the names of my kids is that I try really, really hard to not share the kids’ information. It’s not anything secret – the kids are aware, but it’s their story to tell. I don’t mind talking to you about it, I just don’t want to attach names because we live in a small community. But I am indeed a wife a mother: I’ve been married to my husband for 19 years, and we have three children, ages 17, 13, and 11. Two of my children have special needs.

When my husband and I got married, our plan was that we would probably have two children, and that I would like to adopt a child. After a period of infertility, we fostered the baby that would eventually become my eldest daughter. I have a picture from the first weekend she was with us – she’s sleeping on my husband’s stomach, and he looked at me and said, “Can we keep her?” She wasn’t even eligible for adoption at the time. We were falling in love with this precious little girl who’s wasn’t available for adoption – and then she was. She became our daughter permanently just before her third birthday.

We were aware that she had special needs. I was working as a social worker at the time, so I knew a lot of resources, and since we thought she would be our only baby, we thought we could totally handle it. She had an unknown genetic diagnosis that had caused both hearing and vision loss along with global development delays. When she came home at two and a half, she wasn’t eating solid foods, she was in an infant carrier, and she was wearing clothing for nine month olds because she had been so malnourished prior to coming into care. She wasn’t talking, walking – not doing much of anything that she should have been doing developmentally. She also hadn’t received any medical care or early intervention, which is what you call therapy for children with special needs. It took years for us to finalize her adoption, which is different than most, because it was an international adoption where she was already in the states for surgeries, so it wasn’t an easy process. My eldest daughter is totally blind (no light perception), she has a mild/moderate hearing loss, a rare bleeding disorder, and problems with her gait along with cognitive impairment.

Remember I said we thought we’d only have one child? Surprise! We got pregnant right away after our adopted daughter came home to live with us with our second child, a daughter. 16 months old we were pregnant again and had my son. But the adventure was just beginning.

When my middle daughter was born, she had to stay a little bit extra in the hospital because she has severe reflux and no muscle strength. So she came home on reflux meds because she had such severe reflux – she wouldn’t keep her food down. Because of that, we became connected to the special needs community and very quickly got her into the early intervention program, and she thrived.

When my son was born, sure enough he had the same feeding difficulties and the same muscle tone difficulties; we were in feeding therapy with him for months before he could eat. Our middle daughter outgrew her delayed milestones, but our son didn’t. Through a long process of medical diagnoses, it was finally a woman in our special needs community that spotted the real issue: mitochondrial disease. He’s doing beautifully now, but had he not been diagnosed in time, he would have died from improper anesthesia during a tonsillectomy. He’s doing really, really well, and he’s come so far from then. But, had we not had our adopted daughter, we might not have had the resources and community to make a proper diagnosis, and had the wrong anesthesia been used, he could have died.

Being the mother of three kids with two of them having special needs means the days are full. There are multiple doctors that the kids need to see, and there’s making sure that everything is managed and stable from a medical standpoint. There are multiple therapies: my eldest gets speech, occupational, and physical therapy; my son gets speech. Then, there’s the normal kid stuff – my son plays hockey, my middle daughter is helping with a dance class, and my eldest works and volunteers in the community. My husband and I both work as well. When my eldest went to private school, I went back to work because it’s very expensive. The cool thing is, I work at a special needs school, so the people I work with are very understanding of it all. It’s not like working in corporate America where people don’t get it.

When people ask me how I handle it all, going back to work was truthfully helpful. Having a space where I wasn’t just sitting and thinking about my kids and their issues has been helpful because I don’t have to feel guilty about thinking something else for a minute”. I’m able to help other kids, and that’s been really nice because I do a lot for my own kids. I’m a mom, it’s my job! But when I do something to help another kid… that’s not my job! That’s really cool. It’s helpful for me to help other kids and mothers who are in my same position, where I can share my expertise and experiences and we can share our stories. I find being of service to other mothers and kids going through what we’re going through very helpful.

Contrary to popular belief, I don’t feel that it adds more stress to reach out to another mother who might need help. I feel like I’m making a difference in somebody’s life. The reality is, there’s not time to get my nails done, and I’m not going to go get a haircut and a blowout. But there is time for me to pick up the phone and call somebody. That’s what I’ve done for a long time to ‘relax.’. Now, it’s helpful to be back at work because I have that time to really help a lot of people. I find it peaceful. I like being able to help other parents find their way.

But I am by no means superwoman. I’ve learned to ask for help.  We’ve been using college students to help out at our house, and it’s just helpful to have an extra pair of hands when you have so much going on. It also helps educate the next group of professionals wanting to go into special education to see what kinds of people they’re going to be working with and how much work happens at home. There’s lots and lots of love, but lots and lots of work to do.

If you have special needs children, find other mothers in the community. I found my particular group of women through an online mom community support board for a special needs community. It’s called The Mommies Network, and they have them around the nation. Also, find two moms, one that’s further down the road in diagnosis than you with a similar situation that you can get help from, and another who is newer than you are that you can help. Because you will get as much from giving help as you ever get from getting help from my mom experienced and it takes both.

Also, you have to give yourself a break. Just do what you can do, and learn as much as you can. The thing about being a special needs parent: you’re always going to beat yourself up for what you didn’t do, and “what if” you’d done more. You do as much as you can, and when you find out more, you do more!

 

Finally, don’t be afraid to ask for help. When you’ve got medically-fragile kids, you know, the grandparents can’t even watch them! Sometimes, you have to get nurses to come in and watch them – it’s difficult! Our date nights look different than other couples. We had a babysitter who would come with us and the kids to date night. Our babysitter would take the kids into one movie theater with all three kids and her cell phone, and my husband and I would go see another movie in another theater with our cell phones. If there was a problem, she would call us. If not, we’d get to see the movie! That is not how most people go on date nights. But you know what, it’s worked for us, and that’s how we do things. Don’t be scared to look for solutions. Your date night might not look like your best friend’s date night, and that’s okay. At the end of the day, you get to see a movie, your kids get to relax and be kids in a safe environment, and you’re nearby in case someone whines and cries. Be willing to change your definition of things to match the reality of your situation. You can find peace and happiness in what looks like a tough situation. As challenging as my life looks from the outside, I’ve found an incredible amount of joy and peace of mind. There’s nothing more important than that.