Friday, July 30, 2010

haircuts

Tim's family gets together every Sunday. His brother's family, his sister, and our family meet at Tim's parent's house to eat and spend the day together. His mom and dad love having the whole family over except on .....haircut day.
I think my kids perceive haircuts as painful. Even just trying to take a snip here or there with the scissors ilicits a very strong reaction......I often liken it to "open-heart surgery without anesthesia." Tim wouldn't even mention haircuts until after we had eaten and everyone was relaxed.
It took 7 people to cut one child's hair. I know, that sounds crazy! Tim's dad would sit in a chair in the middle of the kitchen. He would put either Nate or Nick on his lap, facing him. He would bear hug the boy. Phil (Tim's older brother), Dawn (Tim's older sister), and I would try to hold them still by grabbing flailing arms and legs. Tim would man the clippers. The crying and screaming would begin. We were all covered in hair, tears, spit, and sometimes vomit, and the cuts weren't always even. Tim's mom and sister-in-law would wait upstairs. Their job was to shower the boys as soon as they were finished and also offer some comfort. By the time we were finished, most of the adults were also crying. It broke their hearts to do something so upsetting to the boys.
These were Sundays that I envied my friends that had the cute pictures of their child getting a haircut in the salon. This is another ritual that so many people take for granted while we dreaded them.
We have now graduated to haircuts at home. The only one who needs to be held is Noah. I can still handle him, but not much longer. Nate and Nick do a great job with tolerating the haircut.
We've come a long way.............

Friday, July 23, 2010

nick

I feel sorry for Nick. I know that sounds strange, and I'll tell you why.

First, Nick is very high functioning. He has not required an aide for a few years and spends all his day in the regular classroom. He repeated second grade which has done wonders. Anyway, I think he realizes that he is different. Nate and Noah don't know that they are different (at least I tell myself). I really think Nick does. His social interactions are just not par with his peers. He still paces at recess instead of trying to play with others. His rigidity won't allow him to play with kids that he perceives as "rule breakers" whether they are or not.

Secondly, he has no one to play with or talk to at home. He gets nothing from his brothers. They don't talk to him and can't play with him. Tim and I are the only interaction he gets at home.

Third, he has already started trying to care for his brothers. He worries about them constantly. Tim and I have done everything we can think of to convince him that his brothers are not his job. Unfortunately, that day will come.

I feel so guilty that we will be leaving this burden with Nick. Someday he will be responsible for his brothers. He will have to deal with the assisted living and the money situations. He will have to take care of their medical needs. He will never be able to move far away. I hope he will be able to marry someone who will not grow to resent his brothers. This is not the legacy I wanted to leave my child.

good help

Even though I felt like I was being royally screwed, some great people have come into our lives. I have been very lucky to have good people in my house, helping me with the boys.

These gals have been through a lot. They were all trained in ABA and learned how to sign. They have been kicked, hit, and cleaned up poop. They have also been vomited on when non-preferred foods are served for dinner. But, they have fallen in love with my boys. They have celebrated every accomplishment and lamented every setback as if they were their own children. I know that while they were working on speech sounds, they were also trying to get the boys to say their names.

The girls have been in my house 20 to 30 hours a week. Another set of hands allows me to take the boys out to the store or to a restaurant. I remember the neurologist telling us to take Nate everywhere because he would always learn something. Every outing, no matter how quick, was important.

I remember being in Target with the boys and some help. I left her and the boys in the snack area with a bag of popcorn and drinks while I ran through the store. As I was walking out of the snack area I heard a woman comment on how it must be nice to have the money to have a nanny. I was so tempted to turn and ask her if she wanted to trade. Having the girls with me is not a luxury, it is a necessity.

Am I sad that there are days that the boys are more excited to see one of the girls than they are to see me? No. My boys are lucky in one way....instead of just having a mommy and daddy, my guys have a much larger immediate family. I also believe that these girls are better people for knowing my boys.

Tuesday, July 20, 2010

the autismobile

I finally met someone who actually understood what I was going through. Her name was Jen and she had two boys that were the same age as my boys and they also had autism. They only lived about 4 blocks from us and her kids attend the same schools as mine. Finally, an ally!

Friday nights were always difficult because both of our husbands weren't home and the kids were worn out from a full week of school and therapy. Since the boys liked riding in the car, we decided to take them for a ride.

We would put all the boys in their pajamas and pack meds. We would pick them up around 5:00 and drive thru a McDonald's and let the boys eat in the van. We would then drive thru somewhere else for Jen and I and just drive.

It was a great time. The boys were seat belted in and happy with their chicken nuggets and fries. Even though they didn't speak to each other, we believed that they liked being around their friends. We drove and drove and drove. Jen and I could talk and not worry that one of the boys was getting into something. They were happy and we were happy. Jen and I were able to vent, cry, or just sing along to the radio. It was very relaxing and therapeutic.

The drive usually lasted 3 hours and always entailed a bathroom stop at a grocery store. Nate lost his first tooth on one of those drives. Jen and I gave the boys their meds so all we had to do was put them in bed when we got home.

It was a ritual that I looked forward to each Friday night. Jen and her boys have moved, so the ritual ended. I still take my boys in the car for a drive when they are having a rough day, but it's not the same. I miss the feeling of camaraderie I shared with someone else who was living it every day like me. I miss the autismobile.

Thursday, July 15, 2010

not again...

The good news is that when I mentioned to Tim that we needed to take Nick to the neurologist, he didn't argue with me. The bad news is that Nick needed to go to the neurologist.

At 12 months he was not pointing, clapping, or responding to his name. So, we got the diagonosis and called Nate's case manager with First Steps. He was not as delayed as Nate, but still qualified. We rounded up the troops again and got started. The benefit was we started with Nick at 18 months instead of 24 months with Nate. We also were able to get the same therapists that worked with Nate.

I was angry again. Why another one?????? We were told that since we had one child with autism, we were 50% more likely to have another child with autism. That really does not seem fair. I mean really.......one special needs child per family is not enough? Our lives were filled with nothing but therapy. We now had a "therapy room." I didn't want one. I wanted boys who talked and played with toys instead of spinning objects and flapping. I wanted my parenting to be about Happy Meals and Disneyland.

I went through a period when I could not stand to be around typical children. It hurt too much to see what I didn't have. I also noticed how some parents were always trying to "one up" another with what their child could do. It was agonizing to listen to. I still have a hard time reading the "Christmas letters" that come in the mail. My kid's accomplishments seem so insignificant when compared to some of the other "select teams" and fabulous vacations.

If another person told me, "God only gives you what you can handle", I think I would have shot someone.

Monday, July 12, 2010

the little yellow bus

If you live in St. Louis County and have a special needs child, they begin their education on their 3rd birthday. The little yellow bus comes and takes them to school.
When Nate was 2 years 6 months, we started the transition into Special School District (SSD). My case manager through First Steps was a great help. First, I had to take Nate in for a screening to see if he qualified. I don't think he had any skills beyond 15 months. Then we had our first IEP meeting......out first of many. He qualified for all services...speech, OT, PT, and ABA. He needed so many services that he had to go full day just to have time to do everything.
On Feb. 16, 2001, the little bus came to pick Nate up. They didn't have car seats on the bus, but harnesses for the little ones. I stayed at the sitter's to help get him on the first day. Oh he screamed!
Then, I did something stupid..........I followed the bus all the way to school. I could hear him screaming each time they opened the door to pick up another student. Nate was crying, I was crying, and my mom was crying (on her cell phone with me). I felt like a horrible and mean parent putting my baby through this.
His first month of school was rough. He used to fall asleep on the bus on the way home since he didn't have time to nap with all his therapy. He was so strung out that all he did at home was spin Tupperware lids.
It did get better. After a week, he no longer cried getting on the bus. He also slept well at night since he worked so hard during the day.
Nick turned 1 in April of 2001. He was not pointing, clapping, or waving. He also did not turn his head when I called his name. Could it really happen twice????? I made another appointment with the neurologist..........

Saturday, July 10, 2010

some quirks

Here are a few "quirks" we've had to deal with:

1. Nate would not ride in an elevator until he was 7. It sucked because the neurologist's office was on the 9th floor.
2. Nick was very afraid of the automatic flushers in public restrooms.
3. The electric hand dryers in public restrooms scare Nate and Noah.
4. Noah almost vomits at the sight of noodles......I have a kid who won't eat mac n cheese or spaghetti.
5. Nate will not drink anything that has ice in it. He also won't eat ice cream :(
6. Noah STILL is not potty trained. His swim diapers are SCREAMING at the seams!
7. Nate would freak out when we pumped gas. That elicited many strange looks at the gas stations.
8. Any dental work must be done under anesthesia. This includes x-rays and cleanings.
9. Poop spread through the house is just WRONG. When Noah comes to me and says "don't touch the poopies", I am filled with terror.
10. All 3 boys can put the doctor, two nurses, and Tim to the floor during a routine exam.

Friday, July 9, 2010

one of the best days ever

In the summer of 2001, Nate was 3 and Nick was 1. Tim was away at football camp and I was tired of being in the house with the boys. I decided to try taking them out on my own. The problem was they were too big to use the double stroller. This meant that Nate had to walk with me while I pushed Nick's stroller. Nate wandered away and did not respond when you called his name. I was determined.....
We went to the mall in Crestwood because they had a McDonald's in the food court. I got a front parking spot (a good sign) and put Nick in the stroller and had Nate in front of me with his hands on the stroller handle. We made it down the escalator....Nate was DEATHLY afraid of elevators. I put both boys in high chairs at a table close to the counter and ordered.
Crap! I forgot Nate's sippy cup. Apparently, that didn't matter. The OT at school taught him to drink out of a straw. Nate could drink out of a straw!!!!!!! We looked like a normal family with my two boys sitting at McDonald's eating their happy meals. Nate looked like a typical kid drinking out of a straw. I know that drinking out of a straw may be a nonimportant skill for some, but for me it was like a gold medal.
We got a lot of strange looks that day in the food court. There were two boys eating their happy meals, but all their mommy could do was sit and cry tears of joy.
That's when I knew the autism was not going to win.

Thursday, July 8, 2010

getting help

So, now I have to call the Department of Mental Health. I can't get an appointment until May...hmmm...I am due in April. I explain this to the lady on the phone and she takes sympathy. I get an appointment in 2 weeks.
Tim and I take Nate in and they do a screening. He is more than 50% delayed in all areas. Nate is now 2 years old and registered at a 6 to 9 months level in all areas. Seeing that on paper is very hard. Somehow, having it on paper makes it more real..... He qualifies for speech, occupational therapy, developmental therapy, and ABA. He will receive 3 hours of speech, 3 hours of OT, 2 hours of developmental therapy, and 20 hours of ABA a week. OK, here's the problem, Tim and I both work full time. How is this going to happen? I may have to quit my job to stay home so Nate can get therapy.
My boys go to a wonderful sitter. She couldn't love the boys more if they were her own. She graciously offers the use of the spare bedroom for Nate's therapy. How did I get so lucky? Not only does she offer the room, she went with us to the ABA training and learned how to sign. She also brushed him and did joint compressions like the OT showed her. Helping Nate also became her mission.
I was delusional. I honestly thought that in a few weeks Nate would be "caught up." Boy, was I wrong. I had no idea how long and hard this was going to be. It's a marathon, not a sprint. It took months to teach him how to wave and clap. Everything became therapy and a learning opportunity. In some ways, we lost the time of just enjoying Nate.
While all this was going on, I had Nick.

Wednesday, July 7, 2010

the dam just broke

I can't believe I am posting again, but I swear I have so much in my head.....

I used to cry in the car. I had a 40 minute drive one way to work so I did all my crying in the car. I couldn't cry at home because it would lead to a fight. So, for 80 minutes a day, I would cry in the privacy of my car and mourn the loss of the child I thought I was going to have. I can't believe I never caused an accident.
If I cried at home, Tim said that I couldn't love Nate the way he was. By God, that was the way God made Nate and Tim would love him no matter what! He didn't understand the mourning I was going through. Sometimes I wonder how our marriage survived. I think that having a special needs child is one of those big stressers on a marriage...right up there with losing a job and building a house.


My first thoughts when I was sitting in the neurologist's office that first day was "I CAN NEVER DIE!" I can't die.....what would happen to Nate if I died????????? I am sure that all parents think this, but you also know that your children will grow up and be able to care for and support themselves. This is not the case with Nate and now Noah.
I carry this thought with me daily.....it's heavy.

Here it goes......

Ok...so I am starting.....I have had people tell me for years that I need to write a book. A book seems so intimidating. I have a story to tell....sometimes it is sad and sometimes it is funny. I can't guarantee that I will be able to keep everything in chronological order or that my grammar will be perfect. Remember, I teach math for a reason.
I remember that Nate was such a quiet baby...he never babbled or turned his head when I called his name or raised his arms to be lifted. He also didn't clap, point, wave, or sleep well. He did, however, become transfixed with blinking lights and the scrolling updates along the bottom of the tv when Tim watched ESPN. I had to remove the hanging drawer pulls on the furniture and cabinets because he played with them so much that it dented the wood and the noise drove me crazy.
So, I had this nagging feeling that something was wrong with my beautiful blond haired blue eyed boy. For some reason the word autism popped in my head. I honestly don't know why.
Now at the time this was happening, I was already pregnant with Nick. I am sure that my hormones were not helping.
One day, I was sitting in the back of my classroom while my student teacher was teaching. I was looking up information online about autism and came across a checklist. As she was teaching algebra in the front of the room, my life fell apart in the back of the room. I was reading the checklist....yes he does this, yes he does this, yes he does this, no he doesn't do this, until I got to the end of the checklist. It said that if your child exhibits at least so many of these behaviors then you should contact your doctor. OH MY GOD!!!!!!! Nate exhibited all but two! OH MY GOD!!!!!! As my student teacher was teaching algebra, I was in the back of the room silently crying.
Now my husband didn't think anything was wrong with Nate. He loved Nate with all his heart and just couldn't fathom this.
In February 2000, while I was 7 months pregnant, we took Nate to see a pediatric neurologist. This was just days shy of Nate's 2nd birthday. He was a very kind man. The appointment lasted at least 2 hours. He diagnosed Nate with PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified). It is under the umbrella of Pervasive Developmental Disorders along with autism, ADD, and ADD-HD. In that whole appointment all Tim heard was PDD-NOS, not autism. What about the list of books to read and the people I had to call to set up therapy. The doctor recommended at least 20 hours a week. The doctor was just being kind....he changed the diagnosis to autism a short time later. I think he was trying to break it to us gently.
I remember walking to the car a little shell-shocked with a long list in my hand. We were supposed to read some books about autism and call the Department of Mental Health. We also had another appointment with the doctor in 2 weeks. The purpose of the next appointment was for the news to sink in and then he would answer all our questions.
We got in the car and Tim turned to me and said "See, I told you there was nothing wrong with him." OMG was he in the same appointment I was?????????
Boy, did I have my work cut out for me.............