Families love reasons to celebrate, and graduations in particular are special seasons of life. They swell a parent’s heart with pride at the accomplishments of their child. Graduation day for our son represented a “way out there” dream for me. In our son’s younger years I had allowed myself to envision him strolling across the stage in a cap and gown.
Since birth, Patty has been a fighter.
The morning before Patty was born I woke up dreaming that she had died. I was frightened, but I made an effort to put it out of my mind. Subconsciously, I must have known something was wrong. That afternoon she was found to be breach. After I delivered her naturally, the neonatal team unwrapped the cord from around her neck and ran her down the hall to the neonatal intensive care unit. She had sucked in amniotic fluid and stopped breathing.
One of the nurses came back to the delivery suite and told us that she was a very, very sick baby, but she was also a fighter and that was a very good sign. She had torn out all the tubes they had put in, and they had to restrain her arms and legs. When they rolled my wheelchair into the NICU, her little hands and feet were tied to the sides of the bed. Traumatizing though it was, Patty was well enough to go home in three days with a monitor.
From the time we brought Patty home, she clung to me. I jokingly called her my little barnacle. Patty always knew when she was going to be dropped off at the church nursery or with a babysitter. Will and Mary would go to the church nursery with hardly a peep of protest. 10 feet from the nursery door, Patty would start screaming. She fought to stay with us.
When Patty was 18 months old, the special education specialists encouraged me to have her tested to see if she could benefit from special education services. Her older siblings, Mary and Will, had been placed in special education classrooms in the preceding six months. Patty met the criteria for special education due to speech impairment and slower than normal development. They wanted to place her in a classroom out of district, but I said that I could not manage the task of taking her to another place and also be available to take Mary and Will to their special ed classrooms in the district. So at 20 months, a speech therapist came to our house to provide early intervention for Patty.
Will was diagnosed with autism when he was seven years old, and Mary was diagnosed with PDD.NOS when she was nine.
Patty was diagnosed with “atypical” autism because she didn’t fit all the criteria for autism. The psychiatrist noted that she was very bubbly and friendly, but he gave her a diagnosis, in part because her sister and brother were on the spectrum.
In her later elementary years, she began to fight against the diagnosis. And I have hoped that she is right. She was in a learning disability classroom because she had a difficult time learning to read. She received speech therapy from an early age because her speech was very difficult to understand. And she benefited from programs that were available to children with autism and other disabilities. Because of her diagnosis, she was able to develop a relationship with Fred, an Arabian horse at the therapeutic riding program. And without the diagnosis, she would not have been able to have one-on-one swimming lessons.
However, after she learned to read, she began to resent being pulled out of the classroom to meet with the speech therapist and social worker. She said they were treating her like she was stupid. She was not autistic like her brother and sister, she said angrily. I had to agree that there was something else going on. She was able to lie from an early age. Will and Mary never told me a lie until well into their teens. Even then, the effectiveness of their lies were laughable. Patty learned to tie her shoes, bounce a basketball, and write at a much earlier age than Will and Mary. She enjoyed reading the comics.
When Patty entered middle school, she noticed the clothes that other students were wearing, and wanted to have the same clothes. Will and Mary did not really notice or care what their peers were wearing. Patty wanted to fit in and was aware of peer pressure. She fought against being pulled out of middle school classes because she said, I’m not disabled. I’m smart. And she was, but she fought against the services in a very unpleasant way. Because of that, she was not allowed in gifted programs. Her brother, Will, was identified as gifted in fifth grade. But Patty had to fight to get into those programs, despite the highest test scores in her all of her classes for several years running.
In high school, Patty made the sessions with her speech therapist so miserable, that we opted to end speech therapy. She was still the on the social worker’s caseload, but she would walk right past the office without responding to the social worker’s greeting. Patty wanted to be free of the label of autism. She said that she only had the diagnosis of autism because she had grown up with an autistic brother and sister. It was environmental, she said.
When Mary and Will went to college, they both made use of Disability Services. Mary graduated in five years and Will graduated Magna Cum Laude in four years. Patty has refused any help in college, and is on the Dean’s list every semester. With no help.
Patty has a love-hate relationship with autism. On the one hand, she doesn’t want to be identified as a person with autism. On the other hand, she loves her autistic siblings and staunchly defends them, and anyone else who she senses has autism. She was so worried about Will when he moved away that she had headaches for weeks last summer.
Last night Patty was very upset because she found out she needed at least two years of a foreign language in order to be accepted into a history graduate program. She just finished up her junior year last week, and she will not have the language requirement completed if she graduates next year. She has one year of Arabic, but she needs an Indo-European language in order to do graduate work in American History.
So she was in despair last night. My suggestions were met with resistance. I said she could take German courses next year, and finish up after she graduates at the community college. She said she needs to finish the requirement before she graduates, which would be very expensive because her scholarship is good for only four years.
Ralph suggested that she work for a year while completing the language requirement at the local community college. Then she could also save some money for grad school.
She countered, “I don’t want to go to work full time. I want to go straight to grad school. If I get a job, I’ll probably meet some guy and get married, and I don’t want to have kids. I don’t want to spend my life raising autistic children like you did, Mom. If I have kids, I won’t be able go on to school. I feel that God is calling me to teach history at the college level. And if I don’t go, I’ll miss my calling. I don’t want to get married just because everyone my age is getting married. I have other goals.”
“I don’t want to be like you, Mom. Will can get married and have grand kids for you.”
Blinking back tears, I said, “It’s not important for me to have grandchildren. I know you want to go to grad school. I have never pushed you about getting married and having children. You put that on yourself.”
Ralph added, “Not everything goes as we plan. My life didn’t turn out the way that I wanted. But I met your Mom and that is the most important thing to me. I wouldn’t trade that for anything in the world. Maybe you will get married. Don’t close that door. You should continue along the path you are going. This is just a bump in the road. Keep on trying.”
Patty has told me many times that she doesn’t want to spend her life the way that I did – raising autistic children. She is afraid that if she has children, they will have autism. That is a reasonable fear because her brother and sister have a genetic form of autism. (She also has a few autistic traits, but we don’t know if the traits are genetic or environmental.)
I have very mixed feelings regarding the subject of grandchildren. It is very likely that there will be no natural grandchildren in our lives. The realization of this loss struck me about eight years ago when my friends would show me pictures of their grandchildren. Then my younger sister began having grandchildren. She has eight now. On the other hand, what if one of my kids does get married and have children, and what if one of their children also has autism?
I would love that grandchild with all my heart. That is what would happen.
During one of our weekly telephone conversations, Will told me that he was eating sausage and green beans. “See,” he said, “I am eating a vegetable.” And then he told me that the reason he didn’t eat many vegetables is because he cooks like Ralph cooks. When Will first moved away, Ralph spent some Saturdays at his apartment teaching Will how to cook Will’s favorite meals.
Ever since I went to work in 2004, Ralph has been cooking the majority of the weekday suppers. This is because 1) he knows how to cook and 2) he gets out of work at 2:00 p.m., whereas I usually work until 5:00 p.m. or later. Ralph pushed me to work full time, so I told him that if he wanted to eat before 8 p.m., he would have to cook.
Ralph’s repertoire of meals*** include spaghetti and garlic bread, chili mac, chicken nuggets and fries, breaded fish from the freezer and fries, meatballs with barbecue sauce and tater tots, sausage and green beans, tacos, pot roast with carrots and potatoes, turkey with stuffing, barbecue (made with ground hamburger) on a bun and tater tots, hotdogs and steak on the grill with french fries. Will told me that since Dad didn’t have many vegetables in his cooking, he didn’t either.
One of the nuggets of wisdom I managed to catch from the conferences, meetings, and self-education regarding autism when my kids were growing up was that our kids have autism, but they are also like their parents. They will have their parents traits. It was a reminder to think about that fact that their autistic traits were not everything.
So Will tends to learn along black and white lines, which in some ways is good for computer programming and calculus. His creativity seems to be along those lines as well. I tend to think like that in terms of my work at a law office.
Patty told Will last night that her theology professor told her that she was a better student of theology than Will was (they went/are going to the same small Christian college). In part, this is because she brings her depth of understanding as a history major to the subject, along with her willingness to challenge her teacher on his positions. She is a conservative fundamentalist, in a truly historical Calvinist way of thinking. Ralph picks her up from college and they have highly entertaining (to them) discussions. Patty says he thinks deeply about these things. Ralph majored in Bible and pastoral studies in college.
Some characteristics our kids demonstrate have nothing to do with autism, and owe more to their parents’ traits.
***My meals include chicken and dumplings (carrots, onions, potatoes, corn), baked tilapia with rotini and a vegetable, salad, chicken nuggets and fries and a vegetable, baked pork tenderloin and rice and a vegetable, crockpot Boston Pork roast and rice and vegetables, etc. Sometimes when Ralph and I discuss what to have for supper, it is really a discussion about who is going to cook supper.
Six weeks ago, the ulcer on Ralph’s leg reopened. This was a deep open wound a little larger than a quarter. Ralph called his doctor and got in the next day. Two days later, he was treated at a wound clinic. It was the beginning of what is likely to be several months of weekly visits to the wound clinic. Painful and expensive visits.
We’ve been down this road before. In the fall of 2005, it started with a small scratch on his leg, which kept developing into a larger and larger sore. Our family physician finally sent him to a wound clinic.
Just when we thought it was healing up, it would open back up the next week, and stay large. This cycle repeated many times. Ralph was frustrated. The doctors were frustrated.It was so discouraging. The wound did not heal until the fall of 2007.
The pain and discomfort limited our life. Ralph pushed himself to go to work. He pushed himself to take the kids to college and to high school when I couldn’t do it. But if it wasn’t necessary, we didn’t do it. We didn’t go away for weekends. We stopped going camping. If we went to a festival or a fair, Ralph stayed home. Ralph suffered the pain, and I watched him suffer and there was nothing I could do to make it heal faster. We were both discouraged.
But, we gained two important insights from this period in our lives.
1) The work of preparing our kids for independence and supporting themselves gained new urgency and motivation.
2) Despite our difficulties, we needed to actively plan for some sort of respite, even if only for a few hours. I began to plan mini vacations; that is, in my mind I began to think of a vacation in terms of a few hours. We began going to plays, musicals, and concerts. It was a relief to have something to look forward to. And then it was fun to actually enjoy the “vacation.”
I bring this up not because I want others to feel sorry for us; but because I think it is so important for us, the parents of kids with special needs, to begin to prepare our kids for the future when they cannot depend on us. These times of low grade crisis have in the long run helped Will, Mary, and Patty to become more independent, to depend on themselves, each other, and other people. Indeed sometimes, we have needed and received their help.
I have today off. It is lovely outside after a long cold rainy spring. I am sitting here, sorting through bills, records, and old school documents. I want to simplify my life by getting rid of unnecessary flotsam and jetsam.
And I am faced with a conundrum….should I keep the IEPC’s? Should I give them to my adult children? Or keep them in a file cabinet that they can access when and if they want to see them? How will they feel if they read them? Parents of neurotypical kids have a lot of records to keep. Parents of kids with special needs usually have boxes worth of stuff. I have to winnow this.
Mary might be hurt and confused by her records, though she surely is aware of them on some level. I am not sure how Will would feel. But I am absolutely sure that Patty would like me to throw hers away….Burn them.
Of course, I’ll keep the awards (and give them to them when they want them), a few sample report cards. I’ll ask them before I throw anything away.
I have just a few mementos from my own school years. A report card, one of my brother’s kindergarten report cards (I don’t know why I have it, but I need to get that over to him!).
It’s nice for everyone to have something to remember their childhood by.
My niece shared this on Facebook. Some behaviors are universal to all kids. Not just those on the spectrum.
My son used to fall apart if his sandwich was cut in square quarters instead of triangular quarters….It just took him longer to grow out of these kinds of behaviors.
About a month ago, Will excitedly called us and told us he had received a letter from his apartment complex stating that they would now allow their residents to have up to two cats. When he moved in almost a year ago, only birds and fish were allowed in the apartment complex. Having a dog or a cat in your apartment was immediate cause for eviction, plus fines for clean-up. Will has been thinking ever since he moved in that he would be finding another place to live so that he could get a cat.
So Will began planning to get his cat(s). He is a planner by nature. He researched the animal shelters and Humane Societies in the towns near him. He went out and bought a litter box, litter, cat food, and a scratching post. We, of course, had to try to influence that cat(s) that he would choose. I said he should avoid a light colored cat because he would be continually using a lint brush. We suggested he get a fully grown cat because everyone wants kittens, but adult cats have a harder time getting adopted. Ralph said that black cats are adopted less often. Will told us that he would choose the cat(s). Back off Mom and Dad. Still, we persisted. Make sure that you get cats that are affectionate and want to sit in your lap.
Will went to a Humane Society (which was 11.3 miles from his apartment). He called me while I was at Kohl’s shopping with Mary for clothes. He needed the phone numbers of people who could be references for him.
After he brought Ninja and Grant home, he called us. He said that when he sat down in the “Cat room,” Grant and Ninja almost immediately leaped into his lap at the same time, so he figured that they would get along. He paid 85 dollars for Ninja (a female) and 1 dollar for Grant (a male). Of course, they are fixed.
Ninja escaped the cat carrier on the way home and hid under the seat of his car. Will had to coax her out with some food. Then he took them into their new home with him. Grant was sick on the car ride home.
He called us on Saturday night very worried about Grant, who wasn’t eating. He would only drink milk. We discussed various solutions. Now Will has dependents.
Because of our weakness, we sometimes feel that we are not strong enough, that we cannot do the work that God has called us to do.
I felt that I was not strong enough to raise two children with autism, and their sister with learning disabilities. I said rather frankly to God that I was pretty sure that I was not the right person for this job… My inner conversations with God at this time were of a similar ilk. Why do they have to have autism? I don’t know what to do, help me.
I felt weak, exhausted – sometimes too weak to even pray. Even unworthy to pray because I was weak. I felt helpless.
But helplessness is the key to prayer according to O. Hallesby, in his classic book, Prayer. He says “helplessness is unquestionably the first and surest indication of a praying heart…your helplessness is your best prayer. It calls from your heart to the heart of God with greater effect than all your uttered pleas.”
In our crying out to God, even if it does not feel like prayer, it is. So many times when I didn’t know what to do, my only prayer was, God help me. I didn’t know what kind of help I needed. I didn’t know what to pray in the face of tantrums; odd and uneven language development; persistent stimming behavior; barriers to education, mainstreaming, and inclusion; financial difficulties; health problems, etc.
But God has an answer for our weakness in prayer, even when we don’t have what we feel are the right words, or any words, for that matter.
“26 In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. 27 And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.” (Romans 8:26-27)
Those desperate, on-the-fly pleas were really prayers, sometimes spoken out loud, and sometimes silently. Then in my spirit, I waited.
Somehow, an answer would come to me in the form of a person or an idea . Not immediately most of the time.
Will couldn’t participate in organized sports. He didn’t understand running around the bases, or waiting in line to bat the ball. He couldn’t coordinate his hand to hit the basketball at the top of the bounce. A friend or a teacher told me about program at the local rehabilitation hospital for kids, which included group games and one-on-one swimming lessons. Someone else told us about therapeutic horse riding.
Will flicked light switches on and off at our house for years. On day I wondered if piano lessons would help him. Pressing a piano key is similar to flicking a light switch; flicking a light switch results in light, pressing a piano key results in sound. Shortly after that, one friend wanted to know if I would like a free piano. Another friend agreed to try to give Will piano lessons – just to see how it would go.
The challenges of this life can often leave us gasping. But God can gives strength to the weary.
Do you not know?
Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.
29 He gives strength to the weary
and increases the power of the weak.
30 Even youths grow tired and weary,
and young men stumble and fall;
31 but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.
God’s strength is the answer to our weakness. His love is the balm to our souls.
This morning I read a blog written by a mother who is homeschooling her special needs child. That triggered a memory of a resource that we used, even though we didn’t choose to homeschool our special needs children. I have several volumes of NATHHAN News yellowing away in my file cabinet upstairs. It was a very rich resource for me.
Another resource that was very helpful, especially for Will, was the Gray Center For Social Learning and Understanding. We created Social Stories for Will to teach him social skills.
We also used this resource to help our school district develop a policy on bullying. This was very helpful as Will entered his later elementary years and middle school. When Will was in middle school, not a lot was written about bullying and Autistic Spectrum Disorder. Now, as you can see from the links below, quite a bit has been written.