VOICES OF OUR REGION
Mary Ann McGuirk
Transcript
My name is Mary Ann Evans McGuirk , I live in Jefferson Hills, which is in the South of Pittsburgh. I have a husband, David, and four children; a son, David, who’s twenty-seven, Lindsay is twenty-three, Lauren is twenty-two, and Nicole who’s eighteen.
Nicole has cerebral palsy, slash she has mental retardation, and she was diagnosed with autism when she was twelve. So the first year we just thought that she was an excellent, quiet, happy baby. And then we started questioning some things and they diagnosed her at fourteen months.
I honestly just thought God gave me a good baby. My husband and I were just- we had this little child who just smiled constantly and we could lay her on the floor and she just loved to look around and never made a peep.
When she was six months of age, I was shopping and I slipped on ice and I fell with her in my arms. We took her to the hospital, and I thought she hit her head. I like to tell this story because, as a parent, that was the road that we got on that seemed to never end with the medical community. And by that I mean we took her to Children’s Hospital because I thought she hit her head, and by the time five sets of doctors came in to interview us, I said to my husband, “I think they think that there’s some type of child abuse here.” And that’s exactly what they thought, because Nicole ended up having a fractured left femur, which was so unusual because she was six months of age, did not walk -–how did this child fracture her leg when I said she hit her head? But as it turned out, her leg was probably underneath my arm, and when we both fell, that’s what happened.
So she was in a body cast for almost two months, and after she got the cast off, she wasn’t doing the things that my other kids did. And I presented these questions to her pediatrician, and he proceeded to say, “She’s been through a traumatic experience. You’ve really got to give her time here.”
As I look back on this, thank God for home videos, because that’s when I saw Nicole wasn’t doing things at four, five and six months that my other kids were doing, but nobody picked up on it. I am telling you when you look at the home videos, as a mom, I know.
So I asked the doctor at eight months. At ten months I asked him again, and I have to say we had the best pediatrician in the world. He respected us as a family, but because of her fracturing her femur, we really thought she just needed to build herself up. He said, “Let’s just wait a little longer.”
Now I know wait means never -- I hate the word “wait.” I feel if a parent has an intuition, you’ve got to listen to them. So I, in turn, went to Hillman Library and got out every single book there was on birth defects, disabilities, and when I came across the words “cerebral palsy” it just kept jumping out on me. I went home and told my husband and my mom and everybody, and they all thought I was crazy.
Went back to the doctor’s and he said, “Okay, we’ll do some tests.” So we did the MRI It came back negative. They did the test to see if she had seizures. It came back negative. So at that point in time, after we met with that neurologist and he gave us a diagnosis, he let us ask four questions and then say that he had other people waiting in the room and we would have to make another appointment to come back. So something came over me and I said to him, “You know what? We came to you because we needed some help, we needed to be steered in the right direction. We’re not a piece of glass; we’re not going to break. Please tell us what we need to do.”
And all he said was, “Your daughter has cerebral palsy, but I don’t want you to go home and tell the grandparents because somebody will jump off a bridge. You need to enroll her in a school.” But he couldn’t tell us where to go.
So we went home, cried all the way home, made an appointment with a second doctor, and this doctor we thought was wonderful. This neurologist got on the floor, played with Nicole for two hours, got in his chair and said, “How many other kids to you have?”
I told him three, and he said, “You have a beautiful little girl here,” who was twelve months old at the time, “but you have three other kids at home. You need to look for institutions because she’s going to take up all your time and you have three other kids that will need you. And it didn’t quite dawn on me what he meant by an institution. I says, “What are you talking about?”
And this is exactly how he said it. “She’s not going to amount to anything. She will never walk, talk or say anything to you.”
So that’s when she was twelve months old. At that time the first place that I called was United Cerebral Palsy, because they said my daughter had Cerebral Palsy. And I will never forget, the receptionist picked up the phone and I said, “I have a twelve-month old child here. Please tell me where I can get services, what I can do, where the schools are.”
And she said, “We don’t work with children. We work with adults.”
I says, “Well, where do the kids go?”
And she said, “I don’t know where kids go. You know you have to find where they go.”
I said, “Well, can you find me some places?”
She couldn’t tell me anything. But what I would like to say about the second doctor -- when Nicole was eight years old, between eight and ten, I made an appointment to go back to that doctor, pretending like I was just going for an appointment, and we walked into his office and he said, “What’s going on? How are you? What can I do for you?”
And I said, “You don’t remember us, do you?”
He said, “No.”
I said, “This was Nicole. You told us many years ago that she wouldn’t be able to do anything, that we needed to put her in an institution. I want to show you who Nicole is today. Nicole is non-verbal, but she can communicate. Nicole can walk and Nicole can do a lot of other things, and by no means should she have been in an institution,” and I just said, “Thank you for your time, I just want you to please do not destroy parents’ hope. The worst thing you can do is do that,” and I just got up and left. It was just something I had to do at that time.
So then we got her enrolled in St. Peter’s, which was a wonderful place.
How did you find St. Peter’s, after you were told by UCP that they didn’t know where to send you,
They were in the South Hills and that’s where I lived and I knew someone that went there. So I actually called the friend that I knew that her son went there, and she told me where to call. So that’s how I found St. Peter’s.
However, when Nicole was fourteen months of age they said to my husband and myself that we needed to look for other places because they were not able to give Nicole the physical therapy that she needed. And I have to tell you that that was a really, really tough thing because I felt like I was in a cocoon there. I felt safe, I felt secure. I felt that I was getting nourishment from these therapists. They were not only helping Nicole, but they were helping me, helping my husband, helping my family.
I went home and thought I need to call some people just to see what their thoughts are. And I called one of my friends, and what she said to me was, “I know that you’re in a comfort zone, but you have to think of what’s best for Nicole and not what’s best for you.” And that’s probably the best thing anybody ever said to me, because I really was thinking what was best for me. At least because somebody was taking care of me. So Nicole ended up going to the Children’s Institute. She has been there. She is still there. She is also at Thomas Jefferson High School right now. She just transitioned there this past year.
Now, what I think has worked well in our family, Nicole was the youngest, so we took Nicole everywhere with our other kids wherever they went. As she got a little older, Nicole had to learn that there are other people, too, that have needs in the house. If anything, her brother and two sisters really protected her, but they didn’t let her get away with everything, and ironically, her two sisters have gone into this field, which is amazing to me because I tried to encourage them to do something else, cause I didn’t want them to feel like -- I just thought they needed to broaden their horizons, but this is what they wanted to do because of all the people that helped their sister and they could see it first-hand.
And what did you and your husband go through?
As a mom, my feelings were different than everybody else’s, because I felt like I was looking for things, and nobody else could see them, and I had a really hard time getting somebody to listen to me. “I would not be where I am today if I did not have my three F’s; and those three F’s are ‘faith, family and friends.’ If one of those was missing from this equation, we would not be where we are today.
My husband’s personality is he’s always up and life is always great. I think maybe as my daughter’s gotten older, it’s hit him. But when she was little, I don’t know if he ever went through that. I can tell you that there are different periods in Nicole’s life so far, that we have gone through grief. I never in a million years thought anything would be worse than a diagnosis. Never. B ut I can tell you transition was worse than any diagnosis, because thinking about it never goes away. Nicole’s going to be nineteen next month, but she was three years old yesterday, and I don’t know where the time went.
Now, when she was twelve, you said she was diagnosed with Autism. How did that happen?
That’s because I worked in this field, and I went to a ton of conferences and I will never forget sitting at a conference with Temple Grandon, and her talking about her book, Thinking in Pictures. I sat next to the girl next to me and I said, “Gosh, this sounds like my daughter, Nicole.” And as a mom, you know, that crazy thing set in and I went home and started taking pictures, and it was like night and day. Now this might have been maybe when when she was about nine, that I went to this conference. But by the time she was twelve and we put everything in place, and yo know I started investigating everything else that was out there. We finally got a diagnosis at twelve, because we needed it.
People were saying, “Why do you need another diagnosis?”
We said, “Well, it has to do with her schooling, and how she’s being taught.”
We have tried high tech, medium tech and low tech. She is still much better with her pictures as we speak, attempting to try a Dynavox that isn’t really high tech, and we’re going to see how that works. But she does well with her pictures.
What’s been the biggest struggle? You notice I’m taking time thinking about this. You know, that is just a hard question because I’m just putting this into perspective because I have three other kids. So all my time and energy was not concentrated on Nicole, and I will be the first to say that I have four good kids, but they’ve all have special needs, and they might not have all had a disability, but at different times of their life, they’ve all had special needs
So for me to say “What was my biggest struggle with Nicole?” I guess I have to say transition and trying to hope and pray that we can come up with a good way that she would be comfortable communicating. I would say for the last five years, her goals have all been around communication issues.
I am most proud of that, that we still have a family, I am very proud of that our family has -- we’re still here, thank God,I have a wonderful husband, because I would never have been able to do it without him, and she has wonderful siblings. We have had wonderful teachers. We have learned so much from Nicole’s teachers.
Because of Nicole’s autism, she fixates on a lot of things, and she would carry socks, she would carry strings, anything she could find that she would fixate on, and one teacher that wasn’t even Nicole’s teacher, that would see her going to school at the Children’s Institute said to me once, “Do you mind if I buy her a gift?”
And I said, “No, not at all. What were you gonna get her?”
And she said, “I’ll bring it in tomorrow.”
The teacher brought Nicole a purse. Nicole was twelve years old. Nicole has two older sisters and a mom who use purses all the time. None of us ever thought to get Nicole a purse. And she got her a purse that had a really nice chain, that had a leopard-type skin, that Nicole fell in love with, and she turned into a person who loves purses. She has every kind of purse you can think of. And this was a teacher that just observed her carrying something and thought maybe I can get her something that would be age-appropriate. And how could a mom and two sisters not think about, which it seems like it was so simple, but it was a life-altering, life-changing thing. Because when she goes out now, she carries a purse.
So I know the teachers have had a big influence on you. Anybody else?
Actually working this job has made me have more courage and confidence in getting her back into the district. It just gave me more confidence to be able to present reasons why she needs to be back in her district.
I am a Community Partner with UCP Kids, which is the acronym for Unique Community Programs for Kids. We get children with disabilities involved in inclusive activities, but prior to that for many years, I am the Co-Coordinator of the Family Advocacy Network, where I help families with resources.
I mean I’m going through the same transition stuff, too, so it’s like really, really, really scary.
I can’t think of another way to say it. Because you know your other kids. You know, I feel like I raised them right. You know, I gave them roots and I gave them wings, and they’re gonna fly and whatever happens happens, and I hope that they’ll be fine, but I am always going to be responsible for Nicole, and it’s like you’re handing over the reins to somebody else, and as a parent you don’t want to do that. It’s scary.
Nicole’s been an asset to our life and we have learned, she has taught us – she has taught us so much about life, it’s unbelievable.