Panel Discussion Raising Children with Autism
I'd like to welcome a panel of experts to our discussion on raising children with autism. As moms, I'd say they are all experts in their field since they deal with many issues on a daily basis.
First, I'd like to welcome Rebecca White, founder of Heal Yourself Talk Radio. Please check out her website at http://healyourselftalk.com/
Rebecca is the proud mother of three boys and is the host for the Internet site. I recently had an opportunity to be a guest on her show and I'm amazed how she juggles being a wife, mother and an entrepreneur. Rebecca, welcome to the discussion.
Elena B. Elliott and I go back close to twenty years. We both worked for a bank in the credit card sales department. I was so thrilled to learn she was a Born-Again Christian. It was during this time that Tim and I were going through our challenges with infertility and Elena was so supportive and played a major role during that difficult time in my life. She knew how much I wanted a daughter and encouraged me to wait on the Lord. In July 2005, her son Luke was diagnosed with autism at the age of two. She has founded a co-op program for mothers of children with autism named, MACHE—Mothers of Autistic Children Helping Each other. The website is http://www.macheautism.org/Home_Page.html
Elena, welcome to our discussion.
My third guest is one incredible lady I've had the pleasure to know almost all my life. We met as teeny-boppers in church and have been best friends ever since. We went to each other's weddings and Mary has been a major support for me as a parent. She has two twin teenage girls, almost the age of my daughter, Stephanie as well as a young lady who is six years old who was diagnosed with having autism last year. Mary, thanks for joining us.
I'm going to throw out questions opened for discussion so please feel free to share.
Melody—Ladies, give us a little of your child's background; what age did you learned they had special needs and what support systems are you currently using?
Elena—Luke was diagnosed with autism at the age of two. We began noticing peculiar behaviors earlier at around 18 months. We thought he might have been hard of hearing because he was not responding to his name. Also, he would sit and stare for a long time. He didn't seem to be developing like his older brother, Jacob, had at that age. My mom had suggested that he might be autistic. We had him evaluated first at Infants and Toddlers and then several months later by a neurologist. He was formally diagnosed with autism. I have many support systems. One being the group that I started called Mache and the other would be the teachers that work with Luke.
Mary—I was first concerned when Susan wasn't talking much by the age of two. Where other kids knew many words, she only knew a few. The fact that she didn't walk until age two was another issue. I took her to Child Find in Anne Arundel county where we did some testing. I was told that she had multiple developmental delays. She was enrolled in an ECI program and was kept there an extra year. Once we decided to start her in Kindergarten, she was assigned an assistant or as some called them a "shadow." It wasn't a good year for learning. We experienced behavioral problems and challenges with wetting and soiling on herself. When Susan turned six years old, she was diagnosed as having autism. She now goes to a special ed school with other children who have similiar disabilities. The classroom ratio is much smaller and appropriate with five students, one teacher and one aid. The school is wonderful! Susan is doing much better in this setting and with extra attention. We're still dealing with several issues including understanding how dangerous it is to walk or run in front of a car. She's also acting like a two-year old in the sense of picking things off the floor and eating them. As far as the behavior issues are concerned, she was placed on Ritalin. I know this is a controversy matter, but in our case, it has helped very much.
Rebecca—For my oldest son, Alex, what the doctors thought was ADD when he was in first grade, at about 7 years old. Then when he got into 7th grade a counselor there said she didn’t believe he was ADD but had Asperger’s syndrome. So he was tested and we found out that yes, he did have Asperger’s Syndrome. My youngest son is now 6 and was just diagnosed with Autism a couple weeks ago.
Melody—What was your response at the diagnosis? Your spouse's or family?
Elena—We had suspected that something wasn't right with Luke and that autism could be a factor, so when we were given the diagnosis, we weren't surprised. Actually, we were relieved to know that we finally could put a label on the disorder and could move forward with our treatment and therapies. My husband is very supportive and felt the same way. I never felt self pity or sorrow. Luke is Luke. He is a beautiful, smart boy who has a disorder. Some days are harder than others. I try not to focus on the disorder, just who Luke is.
Mary—I was very sad and afraid in hearing of the diagnosis that she may not grow out of this, but I have learned that with the Lord's help and a lot of patience and teaching, that she is starting to learn.
Rebecca—I was surprised on the diagnosis with Alex, more so then I am now. I knew he was a little different, but didn’t think he was ADD when he was diagnosed. I fought for several years looking for another solution or another doctor to help me, as I never believed he was ADD— it just didn’t fit. For Adam, we knew right away the diagnosis was right, even though it was still hard to hear the first time. Since I had already gone through the symptoms as the doctors call it, I knew the details and signs to look for. My husband and the rest of the family still believe that neither of my sons are autistic. I fight with them constantly to help me teach the boys the way things go. I especially have nice long discussions with hubby about the boys, that they learn differently, and need to be taught different then our middle son.
Melody—What past and present treatments have you used?
Elena—Luke just turned five and is attending a pre-K autism program and receives home visits by an early intervention assistant. He sees a speech and occupational therapist at school and a behavioral therapist periodically.
Mary—Routines and consistency play a major part in learning and what I previously said about the medication, Ritalin.
Rebecca—For Alex he was on several prescriptions until he started losing weight. Then I pulled him off and started to teach him ways to learn and do schoolwork that fit his personality and his way of learning. Alex had been on Ritalin, Wellbuterine, and so many other prescriptions that I have actually forgotten the names of them. Right now Adam is not on medicine.
Melody—Do you have a favorite or funny moment you'd like to share which involves your child with autism?
Elena—I can't think of any particular moment, but there are so many wonderful moments that occur daily. There are moments when Luke will say or do something that we didn't expect him to do and we are ecstatic. For the typical child, these things are normal. For Luke, they are wonderful moments. And they seem to occur just at the right time.
Mary—Susan loves dolls and toys that make a noise. Once she received a toy that didn't make a sound and she said, "it was broke."
Rebecca—Alex has always been interested in tornadoes and building house and systems with anything and everything he can find laying around our house. I could tell you several stories with Alex, but the two that stand out the most are:
When Alex was 3 years old, he was playing in the sand on our small pond’s beach. I sat and watched as he took pc pipe from my father-in-law’s barn and started to bury it. He then covered it up with dirt, took tree branches and anything he could find to build a city as well as a drain system for it. He built hills so that the water would run downhill and go into the pond. He also included ditches and ponds so that his little trees had water. He was only 3 years old!
Then one Halloween, Alex, who has always loved Tornadoes and knows so very much about them, wanted to dress up as a tornado. So I had to create a costume. I purchased a hoola hoop, sewed a bed sheet around it, and added cars, animals and anything he wanted to the bed sheet so that when he spun around he could be a tornado.
Melody—What special interests/hobbies does your child have?
Elena—Luke loves to watch TV and especially loves to rewind the same parts over and over. We hear him laughing at those particular scenes and it's so cute. He also loves his "stim" toy which he must have. His stim toy is anything having to do with string or ribbon or robe. He will tie something to this string. It's amazing how he can construct this toy to suit his need. I believe when he is older, that he will be some type of engineer or technician.
Mary—Susan loves Hannah Montana, Dora and Barney.
Rebecca—Alex-tornados, creating anything from nothing, working outside in the yard, planting and taking care of plants, taking care of the stray cats that come to our house, repairing a 35 yr old barn that really should be torn down, but he loves building places in the barn for his fort.
Adam—cars, computer games, PS3 games, building train tracks and playing with his trains. Adam also likes to play with Legos and with the cats that come around our house.
Melody—Describe mealtime around your home.
Elena—Oh, mealtime. Luke was a wonderful eater. He ate anything until about two years old and then he became very picky. In the past, I became very frustrated and tried many techniques to get Luke to eat. Now, I don't make it an issue. I try to feed him healthy foods as much as I can. He will be entering a feeding program starting in May. I am very hopeful about that.
Mary—We always get a plate, go into the living room, watch TV and eat together. Susan's favorite food when we dine out is chicken nuggets and fries with lots of ketchup.
Rebecca—Mealtime is not too bad, but then again, we don’t have a normal family. Alex and Adam are very picky. Adam has to have his own special plate and Adam has to use special silverware, meaning the ones he likes. Since the kids are finicky it makes dinnertime a little more adventurous as I try to find something they both like. Adam also likes to eat ketchup with everything; the food has to go in certain spots on the plate and the foods cannot touch otherwise he will refuse to eat dinner.
Melody—What would you say is the most challenging endeavor of the day or night routine?
Elena—We really have gotten into some great routines and Luke loves routine. So I don't struggle as much as I use to. My husband travels a lot and when he is gone, I believe Luke understands that and that is when our routines get out of whack. But recently I haven't had as many problems. It's been fairly smooth. For a long time, I was working on potty training to no avail, but now he is getting it and I hope that by June, Luke will be fully potty trained. It takes perseverance and patience and once again, there needs to be a consistent routine. One that works for your child.
Mary—Mornings are terrible. Susan doesn't want to get out of bed much less than to get cleaned up and dressed. She'd rather I dress her. Taking her medication is another major battle. Later, once the Ritalin kicks in, she is fine and is happy to follow directions. She is then the lovable girl I know.
Rebecca—Sleep. Both boys have always had trouble sleeping. I honestly don’t think I have gotten to bed much before midnight since Alex was born, and not for the lack of trying. Both boys sleep about 6 hours then wake up so many nights. I want them to stay up late just so I am not woke up at 4 am.
There are other areas that bother me as far as being a parent, but honestly, they are not that bothersome to talk about. The biggest issue is the sleep. Sometimes they sleep longer then 6 hours, but it’s a guessing game as to what day or night they will sleep longer.
Adam likes to cling to me all the time! I love him but he has to be touching me, or sitting by me. He is honestly a shadow. If I want to go lay down so I can get some rest, here he comes. He so hates being away from me that he still sleeps in our bed and that makes it very hard because I don’t get much space. I love him, but honestly, if you have someone who is constantly having to touch you, it tends to wear you down.
The other hard part is the fighting! The yelling and the screaming that goes on at night from both of them. They both can only take so much stimulation and they tend to get on each other’s nerves. When this happens, it takes both my hubby and myself to deal with the situation.
Melody—Does your family have any pets? How does your child relate to them?
Elena—No pets. We all have allergies to them. However, I think Luke would do great with a dog. Whenever he sees one, he wants to pet the hair. And of course he loves the leash, because it's like a string and he stimulates off of that.
Rebecca—Yes, we have several cats. It started out with just one cat, then we adopted another one from the vet's, then we had several strays that had kittens. Alex grew to love the one litter so much that two of them eventually came in the house and are permanent house cats while the other two like going in and out of the house.
Some days Alex really bothers the cats, holds them too tight, loves them too much, and sometimes just irritates them. This has been an on-going issue since he was little to leave the cats alone when they don’t want to be touched. But without the cats, Alex is not grounded. We had two years where we didn’t have any animals at all and Alex was very out of touch, couldn’t handle stress and just was so depressed. For both the boys, the cats seem to be their comfort zone much like a blanket. They hold them and love them, especially when they are having a bad day. Thankfully, our cats can put up with quite a lot.
Melody—How easy or difficult is it for your child to socialize with his/her peer group in making new friends?
Elena—Luke associates with adults better than children. So he doesn't really have any friends. There is one child at school, however, that I am told he really takes to. He understands that they are present, but rarely makes and effort to associate with them. When Luke was born, I was so happy that his older brother, Jacob would have a playmate. That is my biggest sorrow, that they don't interact on a daily basis like two brothers. But when they do, it's wonderful. Just last night, Luke was engaging with Jacob. He was initiating the play. It's almost like I have to train Jacob to play with his brother, because it's like having two only children in the house. Of course, he associates with me the most, because I am his mommy and caretaker. But we all know that even though Luke secludes himself sometimes, he loves us. And even though he can't say he loves us, he does.
Mary—Susan has always had a hard time making friends. At Daycare, the kids know that she's a little different and don't want to play with her. But in her special ed class, she has two friends (both boys) and talks of them often.
Rebecca—Both boys seem to have a hard time relating to kids their own age, they both seem to navigate to younger kids. And making new friends has been a struggle for both of them.
Melody—What do you do to keep your sanity when you've had "one of those days"?
Elena—Pray, cry, call my mom or a friend. Now that the weather is getting nicer, I am going to start getting out and walking to relieve stress.
Mary—I try to end the day by going to bed early or sometimes I will call a friend and vent a little--no, maybe a lot.
Rebecca—Oh man, one of those days? I sometimes think its “one of those days” everyday (laughs out loud).
No really, when I need to get away I will go for a bike ride if it is nice out or many times I lay down in the early evenings after dinner, and when hubby is home just to replenish my batteries. The boys do take a lot out of you as they are both high strung and do tend to “feed” off each other’s emotions and then make each other angry. I love taking bubble baths but some nights it’s more of a hassle to me as Adam is standing at the door pounding on the door yelling that he needs me to come out or let him in because he can’t be without me.
Melody—Do you use support services such as respite care on a regular basis?
Elena—No. My support comes in my relationship with God and my circle of friends.
Mary—I just recently applied for the ARC of Anne Arundel county. They helped me buy a stove which I couldn't afford, but needed desperately. I was also interviewed for disability through the state of Maryland. The lady told me that they can help with respite care and some activities for Susan. It was comforting to find someone very kind and caring.
Rebecca—No I don’t. Sometimes I wish I did.
Melody—What advice would you give a new mom who just found out her child has autism?
Elena—Oh, I love to encourage. I love to mentor new moms who are just dealing with autism. My advice would be to take one day at a time and love your child with all your heart. Don't focus on the sorrow or negative. Embrace your child for who they are. Find a support group and learn as much as you can about autism. There are so many resources out there to help you understand and relate with your child. Understand who your child is and work with their needs. It will take time, but it does get easier.
Mary—Don't give up. Keep teaching over and over again. I still make Susan look both ways when crossing the road. I hope that some day she will understand and do it on her own. Get all the assistance available. Apply everywhere. Most important, don't talk of your child's disabilities in front of them. Always talk to them like any other child and praise them for every good thing they do.
Rebecca—To find others who are in the same situation and find a support group. For myself, I find talking to my friends and taking a few minutes out a day for me, when I am able does help. Do a lot of research, talk to your doctor, talk to the schools and look for programs that can help you either offline or online.