Archive for the ‘special needs’ Category

‘Twas Once a Child

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My daughter, Marie, has reached adulthood, having graduated from a residential program that had services for both her deafness and her mental health issues. This is the age of worry for any parent, especially one with so many challenges.

When she came to live with us at the age of seven and we were told she was “just deaf”, we could not have properly prepared ourselves for the roller coaster ride of a life she, and we, would have. She was a wild child, blonde hair askew, eyes angry, mouth so hungry she would hoard food under her mattress. She was very angry she had been removed from her mother, (for doing unspeakable acts which shall remain unspoken.) Despite providing her with a healthy, well cared for childhood, Marie’s disposition had been preformed. She would lie, steal, beg strangers for money, and reject all of our efforts to parent her. A hug and a kiss would throw her into a fury. Discussing our parenting situation and our need to show her love, she reluctantly let us “fist bump” her. Years later she apologized and told us her birth mom made her promise not to hug or kiss us, and that we really wouldn’t be her parents. It took us many years of fist bumps before she would accept a hug, and many years more before she would let us kiss her. She is now a young adult, and freely hugs and kisses us if the mood suits her. She shows genuine affection and appreciation, the highest reward any parent could expect from an original wild child.

Although Marie can be very capable, she has been unable to live in a non-structured setting because of her unstable bouts with Post Traumatic Stress Disorder. For those unfamiliar with this life altering condition, it is experiencing horrific memories so acutely that one becomes “in the moment” of prior abuse, crazed eyes staring back as though at her accusers, ready to defend herself with flailing arms and legs and gnashing teeth. An ambulance ride to the hospital and sedation was the only thing that could bring her out of her experience. It has always been especially tear inducing, (for me,) when at the hospital, with her hand in restraints, she would wake from the sedation, look around, and finger spell (ASL) asking me where she was, having had no memory of the event. Next she would say her throat hurts, (from screaming, no doubt,) and ask for a Popsicle, which she would skillfully eat while still in restraints.

Marie is now formally an adult. A lot of planning has gone into finding an adult home for her, one that would be staffed 24 hours. My calling all possible supported living programs in our state began about a year and a half ago. With the dual diagnosis of deafness and mental illness, no program would accept her. Many of the programs who may have had prior experience in working with her, never even returned my calls.

After working closely with the Department of Developmental Disabilities, whose frustration and efforts equaled mine; they were able to establish a placement for her that has far surpassed our expectations through a program used to dealing with adults with more severe developmental disabilities. They had no prior experience with a young adult with both of Marie’s difficulties, but once they learned there was someone in such need, they stepped right up and took on the challenge.

Marie now lives in a cute, little house on a nice residential street. As described by those on the show “House Hunters”, this one would be described at “Retro”, with bright yellow tile, a front door carved with circles, and a front porch with wrought iron table and chairs. Neighbors bring over cookies and wave to each other on the street. There are three bedrooms in the house, and she is hoping that a housemate will join her soon. She insists that her house buddy like to watch scary movies, (VERY scary movies,) and, most of all, must not be allergic to pets. Marie has a guinea pig that is usually perched on her chest with both of her hands gently stroking the lucky animal, a calming activity that works for both her and Oreo, who is black with a white center, of course.

Marie is thrilled to be able to go shopping for food she likes, not necessarily the food I have cooked for her. She is no longer in school, so work activities will happily replace the classes with which she used to have such frustration. She has directly chosen the things that she would like to do during the day, throwing out suggestions I would have thought unobtainable.

Marie has always loved to ride horses but gets frustrated that when we go, her horse needs to be tethered to another due to her deafness. She recently began an activity at a horse farm that facilitates riding for children with disabilities. For such children, the riding is therapeutic, but the horse walks slowly. Marie’s job is going to be to trot the horses at the end of the day because the horses themselves get bored walking slowly. What better job than that for someone who loves to ride horses?

Marie’s penchant for all animals has earned her a spot working with “disenfranchised” cats and kittens, that is, homeless felines. She will clean the cages, feed them, and then “show them off” like Vanna White highlights the letters on “Wheel of Fortune”. Oreo will be jealous, I’m sure, so Marie will have to wash the cat scent off before she returns home.

At this point in her life, Marie is feeling very good about herself and her care for others. She has signed up for a Meals on Wheels route, and all of those hugs she didn’t give in her early years will undoubtedly be dispensed ten times over among her lunch recipients.

As a mom with a daughter for whom life experiences didn’t start out well, I am so thrilled that in her adult life she will be doing the things she enjoys with people who will support, encourage and appreciate her. What more could any parent ask for?

 

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To read our story raising Marie and her four siblings, please purchase my book, The Apple Tree:  Raising 5 Kids with Disabilities and Remaining Sane. It is on sale on Amazon and Barnes and Noble. Thank you for your support!

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Come On, Friend!

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One of the joys of being a grandparent is spending fun time with my grandchildren. Sometimes on Saturdays my granddaughter, Rose, and I go to the Play Place at Burger King. She has so much energy that the climbing, jumping, crawling, swinging, hiding and chasing meets her activity level head on. However, the most amazing behavior coming from this innocent little tot is her ability to consider everyone her friend.

Rose, whose speech is delayed, is very large for her age of three, chunky and sturdy, but not overweight. She has a head of wild, curly hair that overwhelms her face. When other children talk to her, she cannot answer questions about her name, how old she is, or other ordinary questions children ask. Instead, she will gleefully look them in the eye, motion to them, and say, “Come on, friend,” as they inevitably run off to play together.

Rose adjusts her behavior to the age and temperament of her friends. Older boys, who would not generally want to play with a toddler, will play “tag” with her, thinking they can outrun her. Giggling, she runs beyond their speed limits with her long legs, chasing them into a corner where she tags them, and she steps back so they can run off and the game can begin again.

If Rose is playing with someone smaller than herself, her whole demeanor changes. She smiles and gently motions them along, skillfully helping them up to the next level, patting them soothingly on the back, and encouraging them with “Come on, friend.”

Rose has the most fun playing with someone her own size. They generally take turns playing “follow the leader”. Laughter streams from the Play Place as everyone is having fun.

Rose does not discriminate between friends, and merrily plays with anyone. One day a boy with obvious ADHD was running, skipping and jumping in a disorganized manner throughout the play area. Rose joined him, step by step, copying the same things he did, laughing uproariously.

Another day, an older girl who was non-verbal with an obvious developmental delay, became her friend. Rose joined her, playing on the outskirts. She copied her; jumping and twirling like her new friend. Every now and then, this girl would make a pleasant noise and Rose would repeat it in a singsong manner, taking her friend’s hand and saying, “Come on, friend,” as they did their dance.

Anytime one of her playmates leaves, Rose runs over to wave and say “Bye, friend,” then looks around for another friend to call her own. If no other children are in the Play Place, she will come and sit with me to have a drink of water and relax a little bit. Sometimes she will stand up and look into the Burger King dining room to see if any potential friends are eating their lunch. “Friends?” she says quizzically, putting both hands up in asking the question. As soon as another child enters the play area, Rose jumps up, runs to them, pats the child on the back saying, “Hi, friend!” as they go off to play.

This past Saturday, I heard screaming coming from the upper level of the play area. Not screaming as though she were hurt, but screeching that affected everyone’s eardrums. The boy with her was screaming also, in unison. Standing on my tiptoes, I saw the boy hit Rose, and Rose hit him back. This screaming and hitting went back and forth a few times before Rose heard me calling her to come down. Generally obedient, Rose was soon by my side where I reminded her that she should not hit or scream. She looked at me with her innocent, big brown eyes, pointed up and said “Friend?” who had continued screaming while his dad sat nearby and played on his cell phone. Reinforcing my rule for Rose that SHE could NOT scream or hit or we would leave, she wasted no time in darting her eyes around the room to find another friend, and soon ran off to play with someone else.

I learned two very important life lessons from Rose that day. She could learn proper behavior, and choose not to engage in misbehavior, even if it was hilarious fun for her at the time. More importantly, she was accepting of all children, and modified her behavior to deal with their differences. What a wonderful society we would have if we all could accommodate those different than ourselves; not just “accepting” them, but actively interacting with them and providing a positive relationship.

Come on, friends, we wait to greet you!

Time Flies in New Hampshire

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We went to New Hampshire a lot when the children were younger, staying in a tent and sitting around a blazing fire, roasting marshmallows and laughing. I loved poking at the fire, which I favored when traveling with my family. Finding a big “poking stick” was mandatory, a green one so the wood wouldn’t burn too fast.

Francis and Dinora were fine with a tent, but when Steven and another foster baby or two joined our family, we had to move up to renting a small “cabin in the woods”. We had tried tent camping with Steven, who displayed symptoms of ADHD from the moment he started to walk. A campsite was too inviting for him, and we spent the entire time chasing him from among and in the trees. Either that, or he would sit motionless, fascinated at wildlife, watching an ant hill for hours on end.

Our conquests of nature were invigorating. To see Ellis Falls, we had a spirited hike down into the woods to view the magnificent wall of falling water, sunlight brightly sprinkling off the cascade. Hiking back up was just enough to make us “feel the burn”. Even though it was a short distance, to us it simulated a hike up a long mountain, including the sense of euphoria when we reached the apex, (the parking lot with our car.)

The children liked Lower Falls best, an area where the water gushed over large rocks, smooth from the years of abrasion. It was fun to crawl among the rocks, often falling into the river, a cold and a welcome respite from the warm sun. When the children aged, they dared fate by sliding down the natural water slide into a small pool of water at the bottom. Hubby and I would bring a cooler of lunch and sit in webbed lawn chairs on the side, closely watching the antics of the children. Steven especially loved this area, as there were many potential wildlife attractions to keep his attention. One year, we hit it right at pollywog season, and Steven and his net were kept busy all day catching the amazing little squiggles of black, (which were, of course, set free before we left.)

We would often take the children out into the lake in our small motorboat. They would go tubing off the end, as Hubby would drive the boat back and forth forcing the tube to repeatedly cross over the wake. They would fish; catching huge, squirmy, samples of fish, which would be released back into the water. It was so funny if they caught a similar fish, thinking it was the same one, as though the bounty of fish in the water sat by just so that the worm could trick that same fish again. There was a small island where our boat would stop and tie up, allowing the children to enjoy a huge rope swing which would send them flying into the water. Joyous fun would be had by all.

The years have gone by and last weekend Marie came along to NH. Did she want to go out on the boat, go fishing, catch frogs from the nearby pond, or swim in the lake? No. Her choice, as was ours, was to lounge around and watch old DVDs. She and hubby especially like The Three Stooges as their brand of slapstick humor requires no ASL interpretation. I never heard so much laughter as last weekend, including a chuckle or two from myself. Then, having withdrawal from Wi Fi and “talking” to her friends, we drove Marie to Starbucks where she could order a smoothie and use the free Wi Fi while sitting in a comfy chair. As we drove away and left her there to go grocery shopping, I had a strong urge to join her instead of schlepping things around the grocery store. Keeping Hubby in mind, however, I was reluctant to say anything, knowing that he would be hurt if I chose Wi Fi over spending time picking out the gourmet ingredients he would use to prepare meals.

We were too lazy to start a fire at night, using the excuse that the mosquitoes would be awful and who wanted to put on the foul smelling spray to keep them away? Instead, we watched more Three Stooges and ate s’mores made in the microwave. Ah…New Hampshire never fails to entertain us. What a great family weekend!

 

Try a Sip of Greasy Wine

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My usual low level of frustration has been tested this week. Anyone who has an adult child with disabilities can understand fully the parenting that goes beyond the age of eighteen. Steven, my wildly impulsive, curly haired son, who was born addicted to heroin and cocaine to a mom with severe mental health issues, has a brain that does not function quite right, especially in the responsibility and common sense areas. His highly valued license was suspended last year for failure to pay for a ticket. After many prompts, in January I led him to the Licensing Board to pay the fine. He then had to take this paper to the DMV to get his license reinstated. He went at least eight times, both when I took him and when he ventured into the crowds himself alone. The fact is, he does not have the ability to sit still or wait for more than 10 minutes before getting agitated, so he had been unable to get his license back. The DMV has wonderful accommodations for individuals with physical disabilities, but wouldn’t it be great if there were a quicker line for those with severe attention deficit hyperactivity disorder. The only incentive for Steven to delve back into the commotion of DMV came when a police officer pulled him over and dispensed a ticket for driving without a license. Off he went back there, late in the day, to get his license. (He was quite excited that he only had to wait 30 minutes, but because the facility was closing shortly, the workers were all working at warp speed to be able to get out of work on time.)   The most frustrating news came in the mail today; a notice that his license is suspended again because he did not pay the most recent ticket…

My son, Angel, seems to be a very good driver, although he is quite fussy about needing to have his car in perfect working and cosmetic shape. Two years ago, he had borrowed my car and, when stopped at a red light, was hit so hard from the back that he was accordianed right into the car in front of him. His injuries were mostly mental, with our insurance having to pay for the damage to the car in front of him, (is THAT fair?) along with the newly instilled fear that he could be killed at any time. My injury was that the insurance only paid for a fraction of what we had paid for this older car, certainly not enough to purchase a reliable car again. It was so frustrating trying to make the best purchase for a minimal amount of money!

About a year later, when he again borrowed my elderly car, the engine literally blew up on him. Again, not his fault. Again, insurance paid a fraction of what we had paid for the car. We searched and searched and found a very old, one owner who only drove it to the church, mint condition car with all of the bells and whistles. (Heated seats! Sunroof! Stereo surround sound!) It was a miracle to be able to purchase such an awesome car for the amount of money we had, and I had truly enjoyed driving it. I say “had enjoyed” because this car, also, has become one of Angel’s victims. This week, while turning with a green light, another car ran a red light and “T-boned” him. He does have some injuries, especially emotional due to this most recent brush with death. My injury is the loss of this “perfect for the money” dream car, the third one in three years. My driveway is again empty.

So last night, trying to squelch my frustration, hubby and I had wine with dinner. I’m not a big drinker, but somehow the occasion called for it. Sitting back sipping it daintily, the ice chips tinkled on my lips. Half of the glass was gone before I noticed an odd, greasy taste. Looking at the ice, what looked like blobs of butter clung to them. Butter? How could that have happened? Hubby’s eyes shot open wide and he ran to the freezer. Because we had corn on the cob the night before, he had put the butter in the freezer, a technique to keep the butter from melting while putting it on the cob. Unfortunately, he had left the butter in the ice tray where it sunk to the bottom of the ice and was ground up to make the greasy ice chips in my wine. I sighed; couldn’t make this stuff up!

His or Her Graduation

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My youngest child, Marie, will be graduating from high school at the American School for the Deaf in Hartford this week. When she came to live with us at the age of 7, her wild child behavior was so bad I never thought either of us would live to see this day. But here it is! She surprised me, this child of mine who prefers to look and dress like a boy, for which with her abuse history, her justification has always been “if you look like a girl, someone will hurt you.” She has chosen to wear a dress for graduation, the very same dress she wore uncomfortably as a junior bridesmaid at her sister’s wedding. Even though that was several years ago, she is determined to squeeze every ounce of flesh into the dress. It is fortunate she will also be wearing a graduation gown or I am sure something would get flashed somewhere!

Although she insisted on wearing her work boots with the dress, I convinced her to wear something “less hot because the day will be warm out.” She agreed to a slide on sandal, and I have chosen a pair that could be used by any sex, (once you take the bows off.)

But my choice of shoe for her makes me wonder if I have not totally accepted her for the person she feels to be. I know many parents would have great difficulty understanding if their son or daughter were gay or transgendered. Marie insisted for many years that she was a boy “inside” and even begged her pediatrician to sew a penis on her. He was very sweet with her, and suggested she wait until she was a teenager before discussing that issue again. After much counseling, it was determined she felt that way only out of desire to be safe, to no longer be abused as she had when she was a young child. Being a boy is still a façade she wishes to project, but not one she innately embraces.

Which brings us to the most recent lifelong dilemma; whether she was going to love boys or girls, a discussion SHE initiated one day. She went back and forth on the pros and cons of both. Bravely, taking a deep breath, I mentioned it would be best to love the person she would feel most comfortable having sex with. Her eyes widened. “SEX?” she asked incredibly, with great disgust. “I never want to have sex with ANYONE!” Too funny! I really jumped the gun!

Despite my desire to buy her flip-flops with bows on them, I really WOULD have accepted her decision to wear work boots, or even to have her doctor sew a penis on her if she was truly transgendered. I have survived my life by learning not to get upset over such matters; it wouldn’t change anything and would only draw us apart, possibly ruining our relationship for years to come. I love my daughter too much and will support whatever adult decision she makes. When she is older and still finding her way in the world, she won’t remember the shoes she wore at graduation. But she will remember my unconditional love and support. What more could a parent ask for?

 

With messy hair and an ear to ear grin

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One of my favorite cartoons as a child was The Jetsons. The portrayal of the future was colorful and amazing; cars flew around in the air and people chatted to each other on videophones.  Contemplating the “picture” phone, I shuddered with dismay.  I would NEVER want to talk to anyone on such a device, picturing myself answering with my hair askew, clothes rumpled and dirty dishes in the sink in the background.  If and when it was invented I would never use it, thank you anyway.  My regular phone would do just fine!

Who could have imagined then that one day we would chat on videophones as a normal part of life.  The first time it became significant to me was when my daughter who is deaf went away to school. Using a video monitor, we could chat in American Sign Language, which is SUCH a visual language.  Not only are the hand gestures important, but this special language includes facial and body gestures. For instance, she could sign “school okay”, with a facial grimace and thumbs down sign or with a smile that indicated “okay” was synonymous with “good”. Not to mention the fact that ASL is a visual language that cannot be conducted on a regular phone, and regular mom/daughter conversations would have been impossible. With modern technology, she can call anyone anywhere and an interpreter on her screen would interpret her words for the hearing person she called and sign back what the other person said.  Several times she has ordered pizza from Dominoes in this way, pleased with herself for her independence. She has had the great fortune of using this method for telephone communication during her lifetime.  How much more difficult would it have been had she lived 10, 20 years ago.

The other wonderful advantage of video chatting is being able to be a grandmother to my California son’s 2-year-old daughter.  We have been visiting with her by phone since she was about 6 months old.  I’d sing nursery rhymes and Papa would pretend to tickle her belly.  We were there as she developed, rejoicing in each new little trick she’d learn. When we see them twice a year at Christmas and for her birthday in May, Lailya readily runs into our arms for hugs, sticking her belly out so Papa can tickle it and sitting on my lap so the 3 Little Pigs story can be told in person. After all, she KNEW us because we graced her living room for games and songs every Sunday evening.

With my son being so far away, these visits were also parental support for him. He was very proud to be able to share his daughter with us, beaming with happiness when we told him what a great job he was doing as a dad and what an amazing daughter he has. He would ask our opinion on toilet training and how to get her to eat more vegetables. We were a family and chatting with him made the distance between us immaterial.

Now when I think back to the Jetsons and my aversion to using a video phone because my hair might be messy, I laugh.  Yes, this past Sunday, while singing, talking and laughing with Lailya and Francis, my hair WAS a mess.  I also had on a bathrobe because it was almost time for bed, (due to the 3-hour time difference between us.) With an ear to ear grin, enjoying our granddaughter’s antics, suddenly what we looked like wasn’t important at all.

What to Learn from Baby Birds

 

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I drive slowly down my street to get home, which includes an area of trees, wild grasses and the occasional soda can or lost piece of paper. It is usually a non-committal drive, with my head swirling with ideas and concerns, not paying attention to the road at all. Yesterday was different. In between the trees was a mother bird, brown breast with brown-flecked wings. 6 inches in front of her was her tiny twin, obviously her offspring. The little one was walking away from her, turning to look back every second or so. Her beak seemed to say, “Go on, little one,” as the tiny bird inched farther along from her mom. It was such a sweet situation to observe!

Of course, all parents have gone through the same thing, pushing our little ones out of the nest. It is an 18, (or 19 or 20) year push. Lessons start early. An infant learns that he can depend on us to meet his needs, and trust that we are there for him. As a toddler develops, he tries to stretch the boundaries, asserting his own will, sometimes throwing a tantrum. As parents, we teach him how to handle his frustration differently, diverting tantrums into learning experiences. We give him lots of choices so that he feels in control, and lots of activities that he can do independently, giving him that sense of self he so desperately needs to develop. When it is time for school, we send them off like mother birds, nudging them along towards independence. We smile, wave, and hide the tears as he goes off to school for the first time, making it a great independent experiment!

By our own modeling, we teach him to be considerate of others, to share, to accept and to encourage. It is by demonstrating the “do unto others” concept that he learns not only his own value, but the value of all human life.

My oldest son, Francis, a manager for a large tech company, goes out of his way to hire individuals with disabilities. He often remarks it is easy to overlook their capabilities when presented with their physical impairments. As a teen, he used to build houses for Habitat for Humanity and teach Sunday School. As a teen, my daughter, Dinora, raised money for the development of a soup kitchen in her native Guatemala, even visiting and working there herself when she graduated from college. Even now, as a successful make-up artist, she regularly sends them money. When younger, Steven, with the weight of all of his own problems, looked kindly upon others, volunteering to help people carry groceries or donating his precious change to someone in need. (I will never forget traveling the subway in Boston and he kept asking me for change to give to all of the musicians and beggars down in the tunnels. He was devastated when I ran out of money.) Angel, who currently works 2 jobs to pay for his car, continues to make time to work at a camp for children who are blind where he has volunteered since he was 14. And Marie, who has so many issues herself, takes pride in leading a young schoolmate with Down Syndrom to get his daily medication from the nurse. She is gentle and kind and considerate of his special needs.

As that mother bird nudged her birdling towards independence, we need to nudge our own children to care about others. The future of Peace depends upon it.

 

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