Volunteering is a Gift you can Give to Yourself

Volunteering is a gift we can give ourselves that can also improve the lives of others. It is a win-win situation with huge implications for both parties. When I volunteer or do something nice for someone I feel happy, almost to the point of giddiness. Before the invention of the Fast Pass for tolls, we would often pay the toll for the car behind us. My children and I would giggle about this gesture, a cheap happiness booster for only $1.00!

I have to admit that all of my volunteer efforts are completely selfish, starting with the adoption of 4 special needs children. People who say I’m “a saint” or “so very special” for doing this are completely wrong. I do it because it benefits me. I get 4 wonderful, if not troubled, children to love and who love me. Despite their many problems, I know that if they were anywhere else, their problems would be much worse. Seeing any improvement in them is a joy, and knowing that I had something to do with that is extremely satisfying. Additionally, I HATE to clean house, so if I have the work of caring for 4 children, then I certainly don’t have time to clean. See? Win-win for me!

I have volunteered with a recreational group of adults with disabilities for 30 years. It is a wonderful group! I do not have to worry about wearing make-up or dressing fashionably because they accept me as I am, as I care for them. I have 50 great friends! We have a bowling league every Monday, and an activity to follow, such as Bingo, a guest speaker, chair dancing, Yoga just to mention a few. We take 2 inexpensive trips together annually. We have been to Disney World, Penn Dutch, New York and Radio City Music Hall, Niagra Falls, Montreal, New Hampshire and more trips too numerous to mention. This is great for the organization’s members because they can have the support they need to travel. I make the arrangements for a motor coach with a wheelchair lift so that our friends in wheelchairs are able to join us. We stay at accessible hotels. The group is great and helps each other, thus proving my theory that almost everyone can volunteer. We have people who are blind who push people in wheelchairs. (The person in the wheelchair acts as the sighted guide!) We have people who are deaf who are sighted guides for the blind. We have people who are developmentally delayed carrying bowling balls for individuals in wheelchairs. It is a wonderful, supportive group. We send each other birthday cards. We have a great social outlet that is entirely dependent upon volunteers. We are so “tight” that when I was pregnant with my oldest son, they threw a shower for me, and they gave me all items I could use so I could bring my son on trips with them…portable crib, stroller, travel size baby lotion and baby powder. At the age of 4 months, my son first started attending this group, and he traveled and volunteered with us until he was a teenager. When my other 4 children were adopted, they similarly came with me and this group, and volunteered to the best of their ability. They loved to help the developmentally delayed play Bingo, and they delighted when their “friend” won! They have learned to be happy in the success of others. They have all provide sighted guide assistance for the blind, pushed wheelchairs, carried bowling balls and assisted in any way needed.

My children have been raised to be conscious of the needs of others. My older son, Francis, is legally blind. That did not stop him from volunteering. In high school he became and Eagle Scout by organizing a collection of 5,000 pairs of eyeglasses which were donated to the local Lions Club. He volunteered at a local child care center and loved playing with the little children. He was an assistant Sunday School teacher and a volunteer annually at a camp for the blind and Bible School. In college he volunteered out of state several times for Habitat for Humanity. He might not have been able to see to pound in a nail, but he was strong and completely capable of carrying heavy materials and helping to hold walls up. He also helped to coordinate several food drives and walk-a-thons at his college. Currently, after obtaining his PhD from Cambridge University in England, he has his dream job of designing computers for people with disabilities.

My daughter, Dinora, adopted at an early age from Guatemala, has Attention Deficit Disorder, Post Traumatic Stress Disorder, and Anxiety Disorder. She also joined us weekly and on trips with the recreational group and she also was an Assistant Sunday School Teacher. She and I did some fund raising to help open the soup kitchen, Tus Manos, in Antigua, Guatemala. Her most rewarding adventure was to spend the summer after high school graduation in Guatemala to help open the soup kitchen. I was there on the actual opening day, and the joy was overwhelming. Dinora had on an apron and a huge smile as she passed out food. She made sure to make eye contact and was friendly with everyone by giving them a pat on the back. Even the individuals who were disheveled and barefoot coming through the line with their eyes glancing downwards were rewarded by the accepting, compassionate friendliness of those passing out food. When they left the line, tray of food full, their eyes were looking upwards, often filled with tears. Dinora said to me she was thrilled to come and help out “her people” because she had led such a privileged life and they had not. She herself had tears of job at being able to help. I had brought with me a collection of new flannel shirts (on sale so cheaply I could not pass them up.) Dinora and I passed them out and the men, in tattered clothes, would humbly bow and thank us. It was a wonderful, uplifting trip. We traveled in a beautiful country and met many beautiful people who touched our hearts forever.

My son, Steven, who has Attention Deficit Disorder, Asperger’s Disorder and Obsessive Compulsive Disorder also attended the recreational group as an infant and toddler. Despite his disability and limited social skills, he developed compassion for people with all types of disabilities from all walks of life. When he was about 8 I remember traveling with him in downtown Boston where there are many beggars on the streets and in the subway. That child had to give money to each and every one! He gave out all of his own money and then asked me for more. As we were about to get on the last subway he saw a disheveled man playing the guitar and he asked for more money. I had no more dollars to give and he said he couldn’t get on the subway until we gave this man something, so we both dug in our pockets to look for change, and managed to scrape up 37 cents which he ran over and put in the gentleman’s bucket. Now, at the age of 17, he uses his obsession with reptiles to volunteer at a reptile education center. He stands at the entrance with a huge boa constrictor, python, turtle or alligator, allowing people to pet the reptile and answering all of their questions. He may not be good at social interactions, but he found his own niche in which to volunteer.

Currently, my 15 year old son, who has Dissociative Identity Disorder from years of early childhood abuse, uses his “game show host” personality to call for the monthly Bingo game with the recreational group. He is HILARIOUS! He puts so much humor and energy into the Bingo games that this is their favorite activity. He also uses some of his own money to buy little Bingo prizes when he sees something he thinks they might like. In return, he gets their acceptance and love. He likewise calls Bingo games for a local nursing home. As a boy who desperately needs affection and acceptance due to his disability, it would normally be inappropriate for a 15 year old boy to hug adults. However his Bingo groups are comprised of many adults who have no family and no one else to care for them. They need his hugs and affection as much as he needs theirs. It is a win-win situation.  He also volunteers at his school as an “Autism Buddy”, a social group where the high school students provide activities and social interaction for younger children with autism.

My 13 year old daughter who is deaf and has Post Traumatic Stress Disorder and Attention Deficit Disorder loves to come to the recreational group so she can be a sighted guide. She has taken great pleasure in her ability to do this. She regularly guides women who are blind into the ladies room, showing them where the stall is. She has helped to feed individuals who need assistance, gently wiping their mouths if food drips down. She also volunteers in the same nursing home as my son. Her job, however, is to clean out the bird cage, (which she LOVES,) and to play Rummy with the residents. They are buoyed by her youth and enthusiasm and she loves it because she is helping.

Perhaps the greatest opportunity my children have had is having an uncle, (my brother) as a relative. My brother was born with Rubella Syndrome in 1951, He is developmentally delayed, legally blind, has a severe speech impediment and has a hearing impairment which has progressed to profound deafness. He became schizophrenic when he was 18, and this has gotten worse, with most of his conversation having to do with his rides on the Starship Enterprise. His head is greatly misshapen, he has only 2 teeth in the front, one side of his mouth droops down, he drools, and he has difficulty walking around and frequently trips without a strong arm to hold onto, My children adore him! He generally lives in a group home but I pick him up on Saturdays and holidays to spend a day with our family. He is greeted by a “Hi, Uncle Steve”, a hug and a smile by them all. The children are used to being a sighted guide for him, and will sometimes argue over who gets to do it. My brother is very easy to please. His greatest joy is riding the escalators at the mall, getting a diet coke and, to make it a perfect day, having a piece of cheesecake or a sundae. We took him yesterday to the mall, riding around for 1/2 hour on the escalators and going to the movies. He got his soda at the movies and afterwards we stopped for dinner and cheesecake. He was ecstatic! When we brought him back to the group home, he clapped his hands and told them it was the best day he ever had! Seeing someone so happy over simple pleasures is extremely humbling. Although caring for him is not in itself “volunteering”, it contains the same components. We do something to make his life better and we are rewarded by his happiness and joy. Money can’t buy the sense of satisfaction that brings to everyone involved.

In summary, to volunteer is a gift we give to ourselves as much as the gift we give to others. Most people, including children and people with disabilities, have the ability to volunteer. It is an extreme self-esteem booster and makes life much more fulfilling. I highly encourage it

Random Thought on Life with Children with Disabilities

Thoughts Regarding Life with Several Children with Disabilities

• When you have several people in your family, (ours has 6 at home,) put names on toothbrushes.  They are only available in so many colors…
• Taking multiple pills is easier if they are placed in a little plastic cup.  Using a hand is not always the safest way to guarantee they will all get into the mouth. (Before I discovered this, I was finding pills here, there and everywhere, especially between the couch cushions.)
• Keep extra pills and a bottle of water in your car in case you are delayed and a child would miss a dose.
• Even though it might be easier, do not schedule doctor’s appointments at the same time for more than one child.  I have learned that there is a direct correlation between the difficulties to be discussed about one child with the doctor and the misbehavior of the other child.  I also usually take the child with the appointment out to eat afterwards for some “quality time”.  This seems to encourage good behavior at the doctor’s.
• Don’t stress out over things that are unimportant in the scheme of things.  I try to clean house, but rarely have time to do a great job.  I don’t care.  I try to have a nice, family meal every night, but only succeed three or four nights a week.  I don’t care.  I try to dress my children nicely for the holidays, but they invariably pull the new clothes off to wear more comfortable ones.  I don’t care.  The house is not filthy and neither are the kids, and the kids are not starving or overweight.  My expectations are low so I am always pleased to meet them.  If I am able to exceed my expectations, I am thrilled beyond belief.
• Find time for yourself and your significant other (if you have one.)  This relationship must be nurtured if he/she is expected to nurture the children.  Stressed out parents affect patience levels.  My children have always had a bedtime of 9:00 pm regardless of age.  They can watch tv, talk on their cell phones, read or do schoolwork, but quiet time in our house is observed at 9:00 pm.  This guarantees quiet time for the parents.
• Take a few days off without the children.  Again, the parental relationship needs to be primary.  The statistics of divorce among families with children with disabilities is staggering.  I work hard at not being that statistic.  Going away without the children takes a great deal of planning, but the reward is a stress free weekend.  With my family, this is also costly because I need to arrange and pay for supervision for 3 separate children.  Again, it is less costly than divorce.
• I make sure the children pick up the dog poop in the backyard BEFORE I rake the leaves.  (I didn’t do this once and boy was I sorry!!!)
• I drive a mini-van with 4 bucket seats and a back bench seats.  This leaves 3 separate bucket seats so the children don’t have to sit directly next to each other and each one has a window seat. Rides have been quieter since I bought this car.
• We try to live within our means financially.  No costly trips to restaurants.  No plays, concerts or other costly entertainment.  I buy clothes at 2^nd hand stores and grocery store brand food. It is stressful enough worrying about the children without adding financial worry.
• You cannot yell at a deaf child.  They will just shut their eyes and they cannot see you signing the angry words!

I find the humor and happiness in life:  watching my daughter  who is deaf in her dance class with a big grin on her face,  joking with my son who has dissociative identity disorder that he needs to check with “his people” before he makes a decision,  watching my 17 year old son with Aspergers when he is holding a wriggling snake and describing everything you’d ever want to know about it, and watching my husband cook supper with my daughter.  She used to be a very picky eater, but now she eats everything she helps cook.  Who knew?

An Expensive Bike Ride!

My 13 year old daughter who has ADHD, Post Traumatic Stress Disorder and is profoundly deaf, was riding her bike near our little vacation home in New Hampshire.  Our “neighborhood” has dirt roads and the cars drive very slowly.  One afternoon, a neighbor whom we barely knew came to the door.  He indicated Marie had been in a bike accident.  I ran out to follow him and learned she had hit a gravel patch and the bike slipped and fell out from underneath her.  Many people had gathered and she was screaming dramatically as she tends to do.  Because she is deaf and non-verbal, if she wants something she screams loudly and the neighbors mistook this for pain and had called an ambulance.  I got there just as they were putting her in the ambulance and she was screaming blood curdling screams.  One would think she was severely injured.  She was, however, petrified! With her ADHD and Post Traumatic Stress disorder she becomes completely unhinged any time she is restrained, and they had her restrained on a back board with a neck brace.

I followed them to the hospital where she continued to scream.  I requested they give her a dose of Ativan, which lessened the screaming a little.  I asked her where it hurt and she signed back in ASL alphabet with her restrained hand

that her neck hurt badly.  They did x-rays.  Then they did more x-rays at her bedside because even though she was still fully restrained, she had moved enough so that the first x-rays did not come out clearly. The x-rays showed no sign of neck injury.  She still complained tearfully that her neck hurt.  They sedated her further in order to do a CAT scan.  That came back showing no sign of neck injury.  The doctor finally thought it was safe to take the restraints off.  Off came the neck collar.  The crying stopped.  “Good!”  she signed, “Now my neck does not hurt anymore.”  The doctor looked at her neck and noticed that a too small child’s collar had been put on her and there was a huge red mark where the collar had been pinching her skin.  This child had not been hurt at all in the bike fall! She was injured by a too small neck brace! Although frustrated at what we had been through, I was at least glad it was over and she was okay.  However, I was not very glad when the bill for the emergency room came.  I have been paying in installments on the $3200 bill uncovered by her state Medicaid insurance program.  That is a lot of money for a bike ride!

Stress Busters…

Thoughts on things I do to reduce stress and remain sane:

 Ø    I buy each person in my family their own brand of socks.  That way, matching them and giving them to the proper person is easy. Also, if the dryer eats a sock, there is always another one to match the spare.

Ø    My children have always had a 9:00 pm bedtime.  They don’t need to actually go to bed, but they need to stay in their rooms and read, watch television, chat on their cell phones or whatever.  This gives my husband and me a couple of hours of “quiet time” and also calms the children down before they fall asleep.

Ø    Every evening, during this time, I try to take a bubble bath.  I have a nice, icy glass of Diet Coke, read a magazine, (I have to much going on in my brain to read a book and remember it from night to night,) and wash with strongly scented body wash.  The scent really cheers me up!  If I feel really decadent, I will light scented candles.

Ø    I work.  I love my job. I get to talk to adults about current events and it gives me a solid foundation to “carry on” otherwise. 

Ø    I schedule doctor, dentist and counseling appointments in the late afternoon, evening or on a Saturday so I do not have to take time out of work.   There are plenty of doctors, dentists and counselors who have evening and weekend hours.

Ø    I find places to take the kids where they can have fun, but that fun is contained.  They love the local dog park where they can cuddle and play with neighborhood dogs.  We go to a small local beach where they pick shells, catch sand crabs, and sometimes even go in the water.  We often go to movies such as “Shrek”, “Ice Age”, “Madagascar”  “Up” and so forth.  There is plenty of adult humor in these movies and I am generally the one laughing the loudest.  We go to a clay studio where the children get to make and paint a piece of clay. (My daughter has done so many wonderful dishes that she will have a whole collection for when she sets up housekeeping!)  We regularly visit the neighborhood pool where the children love to swim and the ice rink where they love to skate.  These are both great self-contained areas where the children can be as active as they want and I can sit on the sidelines and wave.

Ø    I find places to eat where the kids can play and I can visit with a friend.  I do not have much extra time for a social life, so meeting friends for dinner is important.  We regularly eat at a restaurant that has a pool table and air hockey for the kids to play while I get to sit and chat.  Being with friends regenerates my batteries. 

Ø    As I am often in the emergency room with one or other of my children, I have a “hospital bag” packed, not unlike the bag packed by expectant mothers.  In it I have several magazines for myself and my child,  several dollars in change for the soda machine, and a deck of playing cards to play with my child during the long waits for treatment.  I also bring an extra dose of any medication they are on.  Heaven help everyone if his/her Ritalin or Concerta  wears off while waiting in the hospital. I learned to do this after several hospital rooms were in danger of being destroyed and my child was placed in restraints because they could not control themselves.  (I, too, think the oxygen hoses, the emergency buttons and the many containers of medical supplies are interesting, but I am physically able to refrain from playing with them and throwing them around the examining room! My children not so much…)  

Ø    I get plenty of sleep.  If I don’t get enough sleep I am too crabby to face the day!  I am also “low maintenance” in that I dress comfortably not stylishly, I wear minimal make-up, and I have an easy hairstyle.  I may not be the most elegant mom around, but I can get ready for anything in ten minutes!

Ø    I am a “relaxed housekeeper”, to put it mildly.  My house is generally picked up, but heavier housework is not “my thing”.  I would much rather be off at the dog park with my children than sitting home washing the floor.  I do not think that when I die I will say “Oh, I wish I’d kept a cleaner house.”

Ø    I do not take things too seriously.  Shit happens.  Move on.

Ø    I write this blog.  Writing has always been an interest of mine, and by writing this blog, I am able to take some of life’s daily stressors and bang them out on the poor computer keyboard.  Thanks for reading this and giving me an excuse to write!!!!! 

My Brother Says Goodbye…

I took my brother who is developmentally delayed, legally blind, autistic, profoundly deaf and schizophrenic to visit our mom for the last time before she passes away.  I was worried about how it would go.  We walked into her room and she lay in bed.  She seemed to perk up a little when she was told Curtis, her beloved son, was there to visit with her.  She didn’t perk up enough to open her eyes, but she did start to talk, albeit mostly nonsense.  Curtis held her hand and rubbed her back.  He was talking to her, and because he could not hear, he did not realize that she was not really talking to him.  He was talking about himself, of course.  Was there a restaurant around the nursing home where I could take him to eat?  Did they have pie?  He then went and got her a soda from the soda machine and opened it for her.  Soda is Curtis’ most prized item.  He gave it to her, saying he wanted to do his best to make her last days better.  He then told her she was lucky because she had the pleasure of his visit because he was good company and he rubbed her back.  After an hour or so, I had him say good bye.  Not being a demonstrative person, he did not know how to hug.  I felt it was important for him to hug her and kiss her good bye, so I helped position him so they could hug.  It would have been laughable under any other circumstances.  He was stiff like a robot and clearly was not comfortable showing affection.  So he took her hand and shook it, and said “It has been nice to know you.  Let me know when your funeral is because I might want to attend!”

On the way home, Curtis was quiet for a while.  He said “Something has been missing all week and I didn’t know what it was.  Now I do.  I was afraid I would miss saying good- bye to my mother.  Today I was able to give her a soda and rub her back,” (2 things she had always done for him when he was sick.)   “I feel better now.”  This was such a profound statement coming from someone who usually did not think rationally.  Of course, true to his character, he asked to stop for pie.

The Apple Tree Message

Just so we don’t take life too casually and forget that Angel has dissociative identity disorder, every now and then something happens to snap us back into the realization that Angel has many “parts”, especially an “angry” part and at least 2 other parts that took all of the abuse as an infant and toddler .  The other parts do not know these parts, but they are aware the exist.  Every now and then the angry one does something to remind them, lest they forget the great sacrifice he made so they could generally lead a happy, successful life.  Last night was such a time.  Angel had brought home an artwork on a large poster board.  He had painstakingly drawn a huge apple tree, and cut out apples.  He had a beautiful happy sun in the corner of the picture, and apples representing Marie, Stephen, Francis, Dinora, me and my husband, his dog, and 9 apples to represent himself.  It was a happy picture of our family.  Proud of his artwork, he had it hanging on the wall in his bedroom.  This morning when he woke up, the sun and most of the apples had been “blacked out” with black charcoal, (where did he get THAT?)  The only thing left untouched were 3 of his, representing the 3 parts of which he is not generally aware!  If it weren’t true, it would be unbelievable.

I Miss My Mom…

This entry will not be about my kids.  It is entirely about me wallowing in sorrow over the loss of my mother.  No, she is not dead, but she has become ill with dementia and today was the first day she did not recognize me.  My “mommy” is gone.  I suddenly have great empathy for those who have lost their parents.  Because I did not have a great relationship with my dad, I was sad to see him pass away, but I did not feel the sadness I feel now.  My mom used to come over and help me with my kids.  She made me custard pudding, (my favorite.)

She has taken me and the children on many vacations and we had great fun!  Costa Rica, Guatemala, Belize, London, and the Grand Canyon.  She loved to travel and we were more than happy to keep her company.  She liked to go to places where she could really experience a unique adventure.  We stayed at a resort in Costa Rica where we were the only non-Costa Rican people there.  NO ONE spoke English.  We spent the week laughing hysterically at this “problem”.  We ate Costa Rican food, (boiled turkey, roasted rabbit, and lots of great fruit.) She and Dinora took a white water rafting trip, level 4.  My mother had always wanted to go white water rafting.  She did not, however, know that she was going to get wet. There she was in her long pants, socks, sneakers, and sweatshirt, standing next to Dinora in her cute little bikini.  Of course the raft flipped over a few times, and it was a good thing my mom had her life vest on because the weight of her clothing would have pulled her under and she would have drowned for sure! During our trip to Guatemala we stayed at out-of-the way places.  At one place, they did not have electricity and no built in heat or hot water.  We were given a “manservant” to keep our fire running and to heat hot water for a bath.  And on our long trek up the mountain to get to Mayan Ruins, we were all exhausted.  The guide said to watch out for jaguars which lived in the area.  My mom, who was exhausted from the climb (at age 80) said “I almost with a jaguar would get me so that I could lay down.” In Belize, we went to a zoo that had chicken wire fencing around the animals and we almost lost pieces of Steven a few times when he reached his arm into the flimsy cages to pet the lion or the alligators.  She came with us on the trip to London to settle Francis in at Cambridge University.  We spent several days sightseeing.  We ate pigeon.We ate pigeon and we had tea every day. My mother cherished the tea set.  I bought it for her from the inn where we stayed.  I told her it cost $25 (because she was always against spending money on “things”.)  I actually paid $250 for it…One fear of mine came true…I have always had this fear of being poked in the eye with an umbrella, so I would never use an umbrella.  During a double decker bus tour of London, we stopped at Buckingham Palace.  As it was raining, my mother had an umbrella and I didn’t.  Francis took a picture of us, and just as we said “Cheese”, my mom poked me in the eye with the umbrella.  And I have a picture of it! My worst nightmare came true and I lived to tell about it.  

My mom has the most beautiful insides of anyone I know.  She was always upbeat, optimistic, encouraging and pleasant to everyone she met. She never ever had an unkind word to say about anyone.  She always took the “high road”, and she has devoted her life to making life better for my brother, Curtis, who is developmentally delayed, legally blind, and totally deaf.  She always felt guilty because he went to live in a group home.  You could not convince her that he had a full and happy life living with 3 other guys.  A great deal of her dementia has including her insisting she was going to take Curtis home to live with her.

 

She was my role model, my cheerleader, my friend, and she always took care of me.  And now I have to take care myself.  I know I am selfish, but I don’t like it very much!  I feel so sad to see such a vibrant, bouncy, vivacious woman slowly slip away.  I try to visit almost every day, even if she is “out of it” and I just sit there and rub her back or hold her hand.  When I leave, I always hug her, kiss her, tell her I love her and that she’s the best mother in the world. She has always told me she loves me back.  Not today.  For the first time, she didn’t know who I was. I feel lonely.  Scared.  I miss my mommy…

A Miracle that Saved My Life (which you’d only understand if you had a teenage daughter.)

In her senior year in high school, Dinora was scheduled to go on a trip to Greece with her class.  When I wrote to the Department of Health to get a copy of her (adoption) birth certificate for her passport, we were mortified to learn that the birth date on the birth certificate and the birth date on the other legal documents were was different!  Thinking it was a simple mistake at the Department of Vital Statistics, I called.  “No,” they indicated, “That was the date that the court gave us at the time of the adoption.  The only way to change it was to go back to court.”  I was horrified and sick to my stomach. Visions of deportation bounced in my head.  Dinora, of course, was furious at me.  Taking a chance, I sent in the Passport photos, a copy of the adoption certificate, (which had no birth date on it, only the adoption date.) and a copy of Dinora’s Guatemalan birth certificate in Spanish under her birth name.  I prayed that although it was unconventional, it would be enough evidence for a passport.  Dinora was scheduled to leave for Greece on June 5.  By May 28 the passport had still not arrived.  Dinora was confident it would come, as she is confident everything comes to her.  I was not confident at all, and dreaded the day I’d have to face Dinora’s wrath because she couldn’t go to Greece. 

Around this same time was Dinora’s senior prom.  She had chosen a dress several weeks prior, and I repeatedly asked her to try it on so it could be hemmed. Dinora, who was only 4 foot 11 inches, repeatedly said it would be “fine” because she was going to wear “heals”. She  was “busy” and couldn’t be bothered to try it on.  On the morning of the prom, Dinora tried it on before school and came crying to me that the dress was way too long.  It was a beautiful, silky cream color, and I am not at all domestic, so I didn’t have a clue what to do to hem it.  I ran to the sewing store and bought hemming tape.  “I can TAPE it up!”  I thought excitedly. It made perfect sense!  Nice and easy!  I got out the iron and began to iron on the tape.  The problem was twofold…the dress had a flare bottom and the hemming came out lumpy and crooked, and also the heat from the iron was melting the silk in the dress!  It looked ruined and AWFUL!!!  I promptly put the dress down, ran into the bathroom, and threw up.  Several times.  “Please, God,” I prayed, “I’ve never asked you for anything.”  I threw up again “Please, please, please  I am on my knees here, please help me out here.  I am over my head with this problem.”  I knew if ever I needed a miracle, this was it!  Still shaking, I got an idea. I ran to the phone book and looked up tailors.  There was one about a mile away, so I gathered the dress up and rushed to the tailor.  “I need you to fix this!” I almost screamed as I burst into the store.  The tailor took one look at it and said “But this dress is ruined.  See, here, where you’ve scorched the fabric?”     “PLEASE PLEASE PLEASE help me!” I begged through tears.  He said he would try but could promise nothing.  He could have it ready by the following Friday.  “NO!” I screamed like a wild woman, “I need it by 4:00 pm this afternoon!”  The man was shocked.  “I’ll pay any amount of money” I continued to beg.  Reluctantly, the gentleman agreed and I burst into more tears of hopeful relief.  I drove home to wait until 4:00, and when I got home and opened the mailbox, there was Dinora’s passport for her trip to Greece!  I went back to get the dress just in the nick of time for Dinora to get dressed for the prom. It was a miracle, (and for only a charge of $5!) The dress was hemmed and in perfect condition!  It was GORGEOUS!  He pointed out a few minor spots in the back of the dress where the material was scorched, but he said most of the bad spots he was able to hide under the hem.  This was a TRUE miracle which I would appreciate forever.  Of course Dinora, living her own little life, did not have a clue what I went through for both her passport and her prom dress.  She was appreciative, of course, but her appreciation did not begin to approach the amount of appreciation warranted by such an outcome.      

The Girl who said she was a Boy

     Marie, who is profoundly deaf, came to live with us at the age of 7 years old.  At first she appeared to be your typical “tom boy”, but then she began to exhibit symptoms of being something more…symptoms of being an actual boy.  Quite simply, she TOLD me she was a boy.  She would only wear boy clothes, (including boy’s underwear.)  She refused to use the Ladies Rest Room so we found the family and unisex restrooms if she had to go to the bathroom in public.  She begged me to let her get her hair cut short, but her birth mother’s rights had not yet been terminated and she would not give permission for Marie to get a haircut, so Marie would pull it up in a pony tail on top of her head and wear a baseball cap everywhere.  She looked like a boy and she acted like a boy.  She did not want me to tell people she was my foster daughter, insisting I tell them she was my foster son.  Swimming at the public pool was problematic because they did not allow t-shirts.  Because she wore boys bathing trunks, she always wore a shirt.  The lifeguards always told her she couldn’t swim unless she took her t-shirt off.  I obtained a letter from her doctor indicating due to her “disability” she needed to wear her t-shirt while swimming.  I still had to argue with each new lifeguard that there was a letter on file which indicated she was allowed to wear a t-shirt as a reasonable accommodation under the Americans with Disabilities Act.

     Because Marie was deaf, most people did not know the extent of her insistence that she was a boy.  She did not hear me introduce her as my foster daughter, and the use of male/female language did not reach her ears, so in some ways it was easier to deal with socially.  She knew she was a “boy”, she looked like a boy, so she assumed everyone thought she was a boy.  Somehow the fact that her name was Marie was feminine escaped her, but that was because as a seven year old who was deaf, I doubt she knew the context of male/female names.  Difficulties did arise when relatives and friends gave her “girl” presents or try to give her “girl” clothes.  She would look at them as though they were crazy.  Didn’t they KNOW she was a BOY!!! 

      I accepted Marie for who she was.  She was allowed to behave in the manner in which she was comfortable, and if the only problem was finding a unisex bathroom, then we were lucky.

     At her ten year old visit with her family practitioner, she blurted out to him that she was a boy and that she did not have the right part. She begged him to “sew a penis” on her.  He was very comforting and reassuring, and said she was fine the way she was for now and when she was older she could make that decision.  He told her that things might change in the meantime.  She begged and cried and said she didn’t want to wait, but he said she was too young to make that decision.

     Marie continued to insist she was a boy, and when she was adopted she was allowed to get a short haircut.  She was very adorable, boy or girl, with short cropped blonde hair and gorgeous big blue eyes. 

     By the time she was eleven, Marie had become accustomed to our family and she felt supported and accepted.  She also felt safe.  She and I had started to bond, (something which she was reluctant to do because she had promised her birth mom she would not love me.)  I bought a book for girls on puberty, “The Care and Keeping of You”.  Knowing she thought she was a boy, I was cautious in bringing this subject up.  Reading this book, however, had an amazing effect on her.  She was excited.  She was thrilled.  We read if from cover to cover until the cover was worn out.  She would bring it out to show anyone who visited, (male of female.)  We had to go to the store to buy sanitary napkins, and she insisted on buying 10 packages “just in case”.  She asked many questions and I answered them as straightforward as I could.  She shyly admitted to me that she was happy to be a girl.  She told me she only SAID she was a boy because men “hurt girls” and she didn’t want to be hurt any more. She said “the men” never hurt her brother, so she decided if she was a boy she was safe. Marie did not realize the huge significance of this admission.  She had finally lived with us long enough so she felt safe to become the girl she really was.

p.s.  to learn more of the details behind her reasoning, read previous blog “It had to come out sooner or later”…

The Joys of Parenting (?)

Parenthood can be a lot of work at times, especially with children with disabilities, but I always prefer to see the joyful side of parenthood for the following reasons:

1. The sight of a sleeping child, no matter what age, melts my heart.  We always take pictures of our children sleeping on Christmas Eve, so I have a collection of how their sweet sleeping faces look as they age.  It never ceases to affect me and I smile at each and every one.
2. When a child is in a school performance, from pre-school graduation, school plays, award ceremonies, right up to college graduation my pride soars.  Tears always come to my eyes as my well dressed for the occasion child “does his/her thing.”  Each child’s “thing” may be different…Steven, especially in the early years with his sensory integration deficit, would actually hide under the chair, (or the pew in church as was the case when he was supposed to make his first communion.)  Francis would walk slowly looking down due to his visual impairment, and he would be hesitant about who to go to until he got close enough to see them.  Dinora would “strut her stuff”, with us all excited at her accomplishment.  Angel would put on his best “game show host” face and wave to the audience as if the event was entire for him.  Marie would…well, I’ll save that for a later blog because that is a real interesting story!
3. Each time a child learns a new skill, I am overcome with joy at their accomplishment.  Not just the learning to walk or talk part, but the entire route to independence they take.  My 2 oldest live on their own, have jobs and pay their own bills.  Just the fact that they can pay their own bills causes me to leap in the air with happiness. 
4. Sitting around the table eating dinner together usually, (depending on how the kids are getting along,) fills me with the peace.  I like sitting at the head of the table with my husband at the other end, and the kids in the middle.   Holidays and special occasions are always extra nice when all 5 children are there.
5. I feel a happiness only a mother could feel every time a child presents me with a gift they have made for me. Steven made me a wonderful 2 foot tall vase shaped like and alligator, (his favorite animal.)  What mother wouldn’t be thrilled to receive an alligator vase?  The color even matches the colors in my kitchen!  Angel’s, who is 15 years old, has a child-like “part” that makes me jewelry.  He presents it to me with great flourish,  It is always gaudy and  made of huge plastic “crystal” beads.  When I wear it, I feel like I am wearing a chandelier, but I wear it with pride, (until I can get in my car alone and take it off on my drive to work.)
6. Taking the children out for an activity like bowling, horseback riding, or go cart riding allows me to have an excuse and have fun like a kid myself.
7. The times the children prepare breakfast for me is especially joyful, (even though the eggs are tough, the toast is burnt, and the tea has no sugar.  Plus, the kitchen is a huge mess!) I always look on the bright side, and even if my eggs aren’t sunny side up, I am sunny inside!
8. The biggest joy I get out of parenthood is the fact that I do not have time to clean the house…taking care of all of the children’s special needs, all of the therapy, counseling, medical, extra-curricular activities does not leave me any time to clean!  We’ve long ago learned to settle for a “picked up house”, not a spotlessly clean house, (or even a “pretty clean” house.)  I feel no guilt at all.  I would much rather be spending time helping my children than washing the kitchen floor.  I will never lay  when I lay on my deathbed I wished I’d kept my house cleaner!  There are so many more important things to do with the kids, so, sorry, don’t expect my house to be real clean!  Ah, the joy of no housework!!!!

Parenting is a lot of fun and can be filled with joy.  I try to always focus on the positives and downplay the negatives.  It is the only way I remain sane!!!!