Coping with Autism

Okay, cranial-synostosis of multiple sutures is frequently described as having a genetic basis so, being the paranoid mother I am, I checked Nathan's forehead and, lo, and behold, the boy has a ridge along his metopic suture. I called the pediatrician's office and made an appointment for this morning. And just as I thought, the pediatrician felt the ridge too and ordered an x-ray. The radiologist's report said that synostosis was indeterminent meaning he didn't see anything. However, the radiologist's report on Peter didn't mention his metopic suture either. So the pediatrician wants Dr. Tye, the neurosurgeon at the Medical College of Virginia (MCV) we saw with Peter, to take a look at Nathan's x-rays. Dr. Childress, the pediatrician, is faxing the radiologist's report to Dr. Tye and I'm picking up a CD of the x-rays from the imaging center tomorrow to send to Dr. Tye's office. This may come to nothing but if both boys have synostosis it could be...

Since both boys have been in school all year, it's easier to get them to participate in craft projects and activities with their big sister. She always wants to do projects but, in the past, this was problematic because the boys wouldn't use the glue correctly (What am I saying? Peter used it properly the other day but then finished by trying to shampoo his hair with it. He got a haircut.) or they would throw feathers, glitter or sequins all over the floor. This year has been better. They've painted and glued objects onto paper. Next we're going to try popsicle stick projects or something like them. We'll see how it goes but I would like for kids to do more than play outside or watch television. We've planned picnics for days when Daddy is home (and it's not raining) and we're hoping to do a few field trips to museums. I would love for someone to put together travel books for parents of children with special needs. Maybe that's my next project.

I don't know why but Peter and Nathan are fascinated with eggs. Peter maybe more so but only because he is more capable of getting into the refrigerator to take the carton out. He got one, oops-- make that two, out this morning and dropped them on the floor. Part of this may be my fault. To encourage social interaction and Peter's genuine curiosity, he's been helping me cook. He's actually pretty good for his age. I measure things out and he dumps. Now, of course, this means that he assumes he can help me every time I'm in the kitchen which isn't always desirable (try frying chicken with a little helper-- it's very stressful trying to explain, every two minutes, why he can't stand on a stool in front of the frying pan). Today, we made brownies even though I'm on deadline for three opinion pieces-- oh, well, I'll get them done somehow.

The end of the school year is always bittersweet. Teachers give so much of themselves over the year in an effort to teach our children. Nathan's teacher was crying already when I dropped him off this morning and when I asked why (since it was the beginning of class and not the end) she said she realized that it was last time she would help this particular set of children off their buses. The two-year-olds move up and stay in the preschool 3 and 4 year-old class for at least two years but Nathan's teachers get them for only a year before they move on. I'm a little emotional myself. I realize that this is the last time Nathan will be in this particular class and his teachers have done so much for him. He has mastered a number of areas that were considered seriously deficient only last summer. To each teacher who sacrifices your time and energy to help our children, thank you. I don't know if you realize how much we appreciate what you do. Our gifts of thanks at the end of...

Yesterday had to rank in my top ten "worse personal days" of all time. Nathan's diaper was dirty when I picked him up at school. His teachers change diapers right before it's time to leave but I was running a couple of minutes late. (I had picked up juice boxes for his class picnic next week.) And the interim between when they changed him and before I picked him up was apparently just enough time for him to dirty the clean diaper. This would have normally been okay but Peter was "helping" on Wednesday and took my spare diapers out of the car and carried them in the house. I put Nathan in his seat but he fought me because he wanted to "drive." He slumped out of his seat and that was when I discovered that he was not a little dirty but a whole lot of dirty and it was on his carseat and carseat buckle. I had no diapers and only a clean shirt for him so I stuck him in his sister's booster seat (her's is easier to clean) and drove him home. Once...

Well, it happened again. I was rushed for a deadline for some writing projects but I took a break to take my daughter to Tae Kwon Do. My husband had gotten home from work early but had risen early for his job (2:30 a.m.) yesterday so he was tired. Peter had a dirty diaper and I couldn't get him out the door fast enough so my husband said he would watch him. I dropped Gabrielle off and took Nathan to get gasoline for the car (just down the street) and came back to get Peter. I opened the back door and walked past the kitchen just in time to see water cascade down the soffit and into the sink. Peter had managed to flood the bathroom again, less than fifteen minutes after I had left. When Tae Kwon Do was over, the writing project was placed on hold and I installed the lock intended for the bathroom door. Peter will not flood that bathroom again. (I hope.)

My husband and I were told that it would be very difficult for us to have children. Mother's Day would always tear me up because it was just a reminder of our infertility and how much it hurt not to be a mother. Today, in spite of my sons' conditions, I couldn't be happier. What seemed to be missing, my children, are here and that's all that matters. I'm asked all the time if raising children with autism is difficult. The answer is yes, it's very difficult. But the rewards are priceless--when one of them potty-trains or says "I love mama," these are far more significant achievements than those of neuro-typical children and I have had the honor to witness these hard-won victories. Becoming a parent teaches you just how selfish you are. Becoming the parent of a child with special needs teaches you just how unselfish you are willing to be. To all moms, moms-to-be, grandmothers, loving aunts and the teachers of our wonderful children: Happy Mother's Da...

What is up with the water obsession?! Everytime I think I've manage to control this, Peter and/or Nathan find a way around whatever I've used to block or impede their access to water. Peter (who is, of course, more mobile than Nathan so more likely to cause problems with water) found a way to get over my gate/laundry basket blockade and flood the bathroom while I was doing some laundry. (BTW, anyone who tells you that autistic children are somehow mentally inferior to neuro-typical children is an idiot who is blissfully ignorant of the truth. Let him or her try living with an autistic child for a week and they will quickly discover how smart and resourceful they are.) Since this is the second full flooding and probably the fourth or fifth time he has come close to it, I will have to replace the sink cabinet. It is showing signs of damage, especially around the bottom. So that's going to be around $200/$250 from start to finish. On a bright note, however, I bought lock...

Shopping with toddlers is a combination that can strike fear in any mother but combine that with autism and you've got the makings for a possible county-wide crisis. One wants to go one way and the other wants to go another way. And running and hiding from Mommy is funny (Who knew? I certainly didn't know that this was supposed to be funny.) The one thing I went in for turned into five as we picked out a toy for each and a pack of bandages to feed the latest obsession that one of them has for Band-Aids. I try not to take both boys by myself if I can help it. It's just way too stressful. One of them is okay but both is a fearful force. Take the normal toddler behavioral issues, cube them and this is what it is like to deal with autistic toddlers. We did manage to leave the store with a toy motorcycle (Nathan), a small electronic abc/shapes toy (Peter), bandages (Peter), diapers (both) and a box of tissue (the car). But Nathan had to be put in the cart to keep from running of...

This morning, while waiting for my husband to come home after dropping our daughter off at school, I was horsing around with Peter. My parents bought the boys a little toy that, when a button is pushed, multi-colored lights spin around on the inside of a clear ball. When the button is pushed the little toy vibrates a little as well. I was using the silly thing to tickle Peter. I kept putting it against his neck and he would say "tickle, tickle" and then laugh. After about a minute, he giggled and then said, "I love tickling, I love tickling, I love tickling!" We've been trying to get him to use complete sentences and for him to spontaneously say this without prompting has made my week!

Peter apparently hates shoes. The first chance he gets, he takes them off. I think it's because he is sensation seeking and feels so much through his feet. We have issues with this constantly. For Nathan this isn't a problem. He likes wearing shoes but because he took so long to walk (he was 26 month's old when he started walking), he went a long while without them and I think that he thinks they make him look like a big boy. Peter, however, echews shoes (LOL) every chance he gets. His teachers (with whom he has been since late last year) have experienced the "shoes-off" phenomenom but Peter surprised them a little by insisting on taking his socks off. My first thought was that he was REALLY comfortable with his teachers now :)

My husband went out last night and bought a new gate for Peter's room and as I readied the kids for bed, he tried to figure out the best way to use it. Now, in the interest of full disclosure, my husband is the modern American male and grew up watching too much television. He's often all thumbs when it comes to home improvement. He can, however, beat just about anyone, on almost any topic, when it comes to pop culture trivia. So as he struggled to figure the contraption out, I had to come to his aid. I grew up with a father who insisted that we know how to change a tire, check the oil, swing a hammer and know a Phillip's screwdriver from a common. After adjusting the gate, we discovered to our delight that it fit much tighter than the old one and Peter was at a loss as to how to scale it since it was also a few inches taller. Yippee! For the first night in about a week, we seem to have won the battle. However, the war wages on. Peter will get taller and in a few short month...

Peter continues to surprise me. He is stereotypical in his autism (with the hand-flapping and squeals) and appears to be mentally disabled to many who meet him but he's very smart. As I've mentioned before, he is learning to potty train and today he has been coming up to me and handing me a diaper to let me know he has to go potty. He has volunteered to go potty very few times since he started going consistently so I've had to remember throughout the day to ask. Peter's very visual and I'm sure when he saw the diaper I had left out for his brother, it seemed a natural extension to use it to tell me what he needed. Now the next step is to get him to use his words all of the time instead of occasionally. His favorite thing to do (for now) is to say the alphabet and sign each letter as he says them. He is very much attracted to numbers and we've been adding more shapes to his geometry knowledge. He can identify all the usual shapes (star, moon, diamond, rectangle,...

We spent our weekend at my in-laws in New Jersey (and I apologize for not posting--my father-in-law's computer wasn't cooperative). My niece is also on the autism spectrum so it's always interesting to compare notes with my sister-in-law. My niece, "B," is between my boys' ages so as Peter leads us into new territory, we compare Nathan and B to what Peter has done or is doing. On another topic, Peter is (finally) potty-training which you will discover, if you haven't already, is a big deal. I know one mom (also with two boys on the spectrum) whose oldest at 10 is still not potty-trained so this has been a big leap forward for us.

My husband and I learned in December 2005 that our son Peter, who was almost three, was autistic (specifically mild/moderate autism). In March 2006, we learned that his little brother Nathan was also autistic and was given a specific (or non-specific) diagnosis of PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified). Since then, we have joined the ranks of about a million other families who are coping with the everyday challenges and stresses of living with autism. If you find comfort in these postings then this will have been worth it. Let me say that each autistic child is unique just as each neuro-typical child is unique. Anything my children do or do not do may or may not be something your child does. Look to these postings as someone who walks with you-- we'll try to find humor in the odd things our children do and comfort in each of our challenges. Be sure to find support-- either in a local autism support group or with another family. Also, check around for doc...