Sunday, June 14, 2009

Becca and her "Animals"

Which is more socially acceptable for a 19 year old with autism and anxiety who has to carry something with to be less anxious?


Becca's Service Dog Morgan--Can't Go to School, but Can Go Everywhere Else?

Becca has decided to "attend" drivers training this summer. She has NEVER before made it through 15 days of school without getting sick, but we have never tried in the summer. She was never given the opportunity to have extended school year even though missing l/2 the year due to illness, headaches or doctor appointments.

Becca has carried Morgan the 5 pound Morkie "Yorkshire Terrier and Maltese" into restaurants on airplanes, is welcomed with treats at multiple retail establishments, and is a frequent shopper at both Walmart and Target along with everywhere Becca travels.

Until now... the school will not honor the paperwork and add Morgan as a supplimentary aid or even on her "list of things Becca needs to be successful" through her IEP.

When asked if Morgan can attend the State Technical Schools sponsored Drivers Training class, Becca was told "NO", and told to bring something with but not alive. They are asking us to make her regress and start carrying the stuffed animal that took me years to break.

Morgan is in a carry case, she sits quietly, patiently when working (in her case) and when out her job is to be friendly to enable Becca to converse socially with anyone who can't resist the tiny social puppy.

The ADA has rules on service animals and with the article in the Wisconsin State Journal about Federal Service Dog Rules Becca is filing just another complaint. No one takes her dog away when she needs her most.

Monday, June 8, 2009

Confused? This Makes No Sense.

For the last 7 years of Becca's schooling I have been fighting the schools to follow the recommendations of her Medical Providers. They tell me they only have to "Consider" her medical information and they won't comply with the doctors orders, medical treatment teams recommendations for Becca's Home Instruction instead of heading to school. Least Restrictive Learning Environment for Becca is a place where it is sensory friendly, with someone who will be her paraprofessional "or Coach" as the neuropsych said she would need to be successful.

So for the last years she has faced many semesters without school or little schooling. The district took out all her aids and supports, assistive technology, paraprofessional services, textbooks on CD or computer, her computer reading software, headphones and then even lost the 7 pages of the Technology Evaluation we worked so hard to make happen in Michigan and even the Pages of the Notes of things to help Becca. They claimed they had never seen it before, but they had it buried in their files. They didn't want to see it. They said she didn't need it anymore??????? All her aids and accommodations were removed but someone writing for her or built up pens and pencils. This week they told Becca " isn't it easier if your parents can read for her, write for her, it is much more time consuming to have to do it yourself." What ever happened to help her to be independent, not even more dependent?

We have argued and they won't provide any Occupational therapy, won't provide an autism consultant and transition services. She doesn't need any. With hands that are falling apart, that is the medical worlds problem and it doesn't affect her learning. ????? In fact despite a State and Federal Mandate for transition goals at each IEP, we never get to talk about it only talk about Programming. Programming that will only happen IF she returns to school, despite a Neuropsychological report that states "probably won't be successful in a high school setting".
Her IEP is a joke, it means nothing. It is not FAPE, Not IDEA.

Becca signed up for the Classroom Drivers Training and today I contacted the head of Student Support Services at the Technical College, and they will have to approve her support services BASED ON MEDICAL DOCUMENTATION. The IEP wil help them understand the students challenges, but the MEDICAL DOCUMENTATION is what they need to approve supports for Becca.

They have reading software in the support services, they will accommodate lighting etc. They have transition planning services, but we have to wait to graduate to get there. Our district has kids who have dual enrollment, but when Becca asked if she could take classes from the Technical College, they told her they will consider it and then denied it by not adding it to her IEP.

The schools do not have to follow the American with Disabilities Act, they can do what they want.
They denied Becca a Free and Appropriate Public Education because they can discriminate against her because of her medical and sensory needs. They will not provide the technology but the College will? She should have been trained to use it, for her it is just too late once again.

But she can't take the courses to lead to a career in the medical fields because she has not had the Biology or Chemistry Classes she needs because they took "books on CD" and supports they don't have either course on tape as the books are too old. They have to find a comparable book with appropriate tools if it was written in the IEP, but they took out that she is dyslexic and has visual challenges and needs to have things read to her. Why? Because they will have spend money on her, they may have to "buy her a Biology Curriculum" which is not just some dumbed down curriculum and support her using technology.

Becca starts classroom drivers training and they are trying to accommodate her needs how come the school district will not do the same. I can't wait until she turns 21 1/2 so she can attend the community college, but she has to graduate first which won't happen because they will only give her one credit a semester and this fall only a half.

I love the school district for my kids with Fetal Alcohol Syndrome, I used to make excuses for their failure to school here as she is complicated, but no longer. They are just running down the clock to being rid of her I know their game.

I have not filed complaints, I did not want to go to those lengths, but the special education director has not followed through on what she promised to "look into". We just keep waiting for her to deny so we can appeal. But no longer, the complaints are coming and they will have to answer how they schooled Becca.

The new game, meeting after meeting running down the clock to try to avoid doing anything and not provide anything in writing. Waiting for the clock to run down till Becca is 21 a little over a year away.

What does this leave us with? Becca with no HS Diploma.

Wednesday, May 20, 2009

News on Seclusion and Restraint

Read the GAO's Report on the Issue of Seclusion and Restraint

Listen to the comments from The Obama Administrations Education Agenda: Sec. Duncan on Seclusion and Restraint

To Find More Articles on the Issue of Seclusion and Restraint



News Story from Georgia

Posting on several google alert articles from the last couple of days

Restraint--Destroyed Becca's Trust and Schooling

(Becca in 2004 a whole 42 pounds, 42 inches and the size of a 5-6 year old with Noonan Syndrome, Cardiac Issues, Bleeding Disorder and Low Muscle Tone.)

Why would they have to restrain someone this tiny? CRYING
and she would never trust again after the schools left bruises, bruises heal, but trauma and trust doesn't.

At long last, the issue of seclusion and restraint of children with disabilities is coming to the forefront. I doubt taxpayers and many are aware that for some children with disabilities schools are not a safe place, or a place that they can learn. For some children school can become a place where they are traumatized and for some a very unsafe place to be. We will control them mentality. Did you know that some schools put children in closets of have specially designed boxes or timeout rooms where children are forcibly taken when they do not comply? Did you know that children have died when staff members who are often untrained or mistrained take down a child to restrain them?

I have long understood the ramifications of this practice. I understand that a child can be a danger to self or others and they cannot control themselves and one must intervene. I had to place my adopted daughter in the psychiatric hospital because she was so out of control that for her safety and the safety of others she needed someone to control her. She was stuck in the state hospital because in order for her to go to a residential facility they could not use restraint and seclusion because of Medicaid rules. My question then was how could schools use it when the residential facilities could not, only hospitals in the last resort.

Over the years I have advocated for children whose parents were concerned and often distraught when their children were coming home from school with unexplained bruises, but if a parent sent their child to school with bruises we would be reported to Child Protective Services and face losing our child. But schools had carte blanche on "how to handle" our children.

I have heard horror stories from across the country of children brutally restained, or at tied in chairs or even killed because of staff not knowing how to safely restrained a raging child. They always say the child was a danger or biting staff. But often times it is the lack of adequate supports, supervision, and untrained people working with a child with very different learning and emotional challenges.

This week a grass roots movement of parents who have long been asking for changes and hearings on the issue has gained National Attention. Last night many news stories carried news of restraint and seclusion on their networks. There were meetings in Washington DC on this issue.

For me it is bittersweet, for years my Becca has been home, long traumatized by her bout of misunderstanding and the trauma of being restrained by school personal her only offense, crying. Crying because they did not give her the supports she needed after denying those to her at her fifth grade transition meeting, sending her to a middle school classroom segregaded from her able bodied peers because they refused to give her a paraprofessional. To save money she had to be moved with lower functioning peers in a resource classroom where they could share staffing and she would be maintained and not challenged. They would not give her her own aid which she had had for all her school years. They said she needed to be independent.

The middle school paraprofessionals were never trained on Becca's special needs, and her inability to talk when stressed. (Paraprofessionals did not have to have any sort of degree or even at that time background checks). I was not allowed to meet with them to explain her significant needs. They were never given a copy of her needs identified in her Individual Education Plan or the two pages of addendums on what they needed to do to help Becca. They were not attached to the IEP after the meeting and lost between the elementary school and the middle school. They did not follow the plan and Miss Becca at 12 was only 42 pounds and the size of a first grader. Becca had just been diagnosed with Autism along with her Noonan Syndrome and the noise and lights of the schools coupled with her medical fragility and fatigue meant she always had had a shortened day at school. She had never had a full day except for maybe in September and May when she was healthy and at her best.

The IEP team denied adding autism to her IEP and anything to do with her sensory needs. They disagreed with the treating doctors, the psychologists, the neurologist and the new over $2000 neuropsychological testing which identified many needs for Becca. Between our insurance and our family we paid for the testing so we could plan to meet her intensely complicated learning and medical needs.

They moved Becca to a new school, without listening to the medical/psychological treating professionals because schools know best. Did you know that the educational rights of special needs students specify that the schools only have to consider the doctors orders, not enforce them?

Teeny Tiny Becca ended up in a pull-out classroom where one or two hours of day they went to a class with able bodied children. The "SPED KIDS" ate at a separate table between the sixth graders and eight graders coming in and out. Becca got in "Trouble" for talking to her sibling and his friends for leaving the table. The para would force her to eat, even with her swallowing issues and the therapists warning to never force a child who is learning to eat to eat. Her feeding pump nighttime nutrition will take care of that. Eating for Becca hurts, she chokes, foods dump into her gi tract because of abnormal anatomy, plus her mouth is often full of sores from her chronic thrush and infections.

In the classroom, most of these children had lower iqs (in the 60's or lower) and were more delayed then Becca. Becca was in a gray area where she was not quite up with her peers but behind because of all the missed work from being so ill most of her life, and the lack technology to support her severe learning challenges. Becca's hands do not work, she cannot print well, her motor programming challenges with her visual spactial issues means she needs tools to use to learn and keep up with her peers. Becca was on the computer at 2 in Minnesota and we were told that technology was going to be her best friend. As time went on the IEP team fought us on the use of technology as they did not have anyone who would work with her individually to teach her to impliment its use. Then there was the favorite excuse, it would make the other students feel bad if Becca could use the computer that was placed in the classroom for her use. The only one who used the computer brought in for Becca was the teacher to make her job easier. Sometimes the whole class could play on it, but it was not used by Becca to be mainstreamed or to help her.

Back to the story... Becca was coming home telling me the paraprofessionals were not following the IEP. She and her little friend were being dropped off the bus and at times no one would meet the bus and they were stuck outside because her arms and tiny hands too fragile to open the heavy door. The only handicap accessible door button was on the other side of the building and the bus dropped them off on the opposite. I followed the bus one day, and got stuck behind a train and arrived ten minutes later to witness Becca and with her friend who uses a walker standing soaking in the rain. I let them in and this Mom was not happy when I was in the principals office explaining the situation. Earlier in the fall Becca made me help her file a complaint about the school building being ADA accessible. But because they had a button they found the school in compliance. But they did not drop the kids off at that door, they said Becca and her friend with the walker could walk around the building. Becca still used a wheelchair whenever we were out and about because of her limited ability to walk more than short distances.

The paraprofessionals were "making" Becca write. When she asked them to write for her like they had always in the past when her tiny hands fatiged after a few words, they forcibily told her she had to write. They were unaware of the two page addendums on her IEP of what their job was to entail, which #1 was write for Becca. She was a compliant child, did whatever she was told and she just shut down and now hated going to school. By this time she was getting vocal with me telling me what was going on. When I talked to the teacher, she and the professionals said that Becca needed to write because she could and she was just being stubborn. Becca had a motor planning disorder that was caused by her 12 minute lack of oxygen and it is a permanent brain injury much less her muscle disease that was impairing her ability to write.

Becca came home one day with a huge hematoma on her head, she had been in the hallways during class changing time and had been knocked into her locker by two boys playing keep-away with their biology textbook when the one 6 foot boy lost his balance and landed on tiny 42 pound 42 inch Becca. No one called me, no one told me of the injury. When I confronted the teacher she told me that Becca needed to "socialize" with able bodied peers and that was why she was in the hallway. I was livid. They totally ignored doctors orders and that bleed could have killed her. She needs to have medication within minutes of her injury to prevent her from having joint, muscle and bleeds that can have life threatening complications.

From that time on Becca cried everytime I dropped her off at school. IEP after IEP we wrote with school being the ones who thought they knew best. A parent cannot fight the school who does not want to set precident and open the floodgate of parents wanting the same for their kids. They told me IDEA never fully funded by Washington DC and they could not afford to meet Becca's needs. I could homeschool her if I wanted too, or "show Becca that we mean business".
They wrote in the IEP that she had to comply and be at school everyday or they were going to refer us to Child Protective Services because of Educational Neglect. This inspite that Becca's medical needs had kept her out of school half days her entire life, and over half the rest of the days because of illness caught at school because of her immune deficiency.

I complied, because I did not once again have the money to fight the IEP teams decision to take the school district to fair hearing and hire a lawyer. We now had 11 children, 6 with special needs, and a husband on residency pay.

Becca begain to melt down, crying fits when I dropped her off, one day she was so upset she threw a pop can we had collected for our Backpack project nailing me in the head. She was not my happy child anymore, she was petrified. She had been abused by her newly placed adopted brother severely and he had almost killed her four years earlier and she now knew the world was not a safe place. Her school was not a safe place. I was wondering why she was coming home with so many bruises. Touching Becca, bumping Becca often left bruises, but there were many.

One day I dropped her off per the IEP because the district no longer could get Becca on the bus because of her crying (she had road a bus before and for five years successfully with Marissa or the nurse back in Minnesota). The beginning of the year she rode it without incident. But the inability of the school to meet her needs and not listen to her doctors, treating professionals and her body's uniqueness had cause so much trauma to Becca she did not want to go I thought.

One day in spring I dropped her off in the counselors office per the teams decision to put her in a conference room alone to cry it out, despite my knowing this was not going to work, but I did not want to lose my daughter to the foster care system because of schools threatening to call CPS and take her away.

I had forgotten Becca's backpack with her medications, her food for her hypoglycemia and her water as she gets dehydrated easily and her inhaler. I walked in to witness the paraprofessionals carrying my daughter screaming, one had her frail arms and squeezing her tiny chest and the other pulling her tiny legs. Becca was no bigger than a thin Kindegartner or 1st grader. They were doing this at class changing time with over 800 kids in the hallway to witness her crying.
The school was doing vision screening and Becca's crying was irritating the screeners and they felt that Becca would be embarrassed by the other middle schoolers hearing it. Didn't they think restraining and carrying her in the hallway at class changing time would be worse?

I called an emergency IEP meeting where I had to "make her understand and show her I mean business" or take her home to homeschool her. I had understood from Becca who I had taken to the doctors and talked with the therapists about what had happend and Becca told us they were "hurting her at school". Becca was restrained at school for "Crying" or "Refusing to write".

For Becca her whole life has been medical tests, the word "test" is a trauma trigger. Making her take a "test" sets her into crying. Making her write, will not cure her brain injury or fix her hands that don't work. Making her go to school when she can't will not change her faulty immune system, or the headaches caused by flourescent lights or the noise she cannot filter from all the other students.

I pulled her out, then the next year with filing compliants I had discovered that they could not make me homeschool her, the school had to service her. Doctors wrote orders, and the school would only provide 2 hours a week. Kids where had IEPS in our district who had been kicked out for being distruptive or were a danger got two hours a day five days a week.

For years I fought long and hard, filed compliants, no one would listen. The schools were in charge of her education. I had to look at classrooms for Becca where autistic kids sat rocking, where other kids did nothing but drool in their wheelchairs, or other classrooms where kids had behavior issues where they threw desks at teachers and the kids who did not comply were put in boxes for hours.

One school I was to place her at, killed a teen with autism by prone restraint, four people suffocating him and the district would pay out a settlement years later after blaming the parent for not meeting his needs. I had joined the autism society's class action lawsuit saying that their was not an appropriate placement or appropriate services for children with autism in our district or the state, only to be dismissed.

IEP after IEP they denied more time with the teacher, eventually they upped the school hours to one hour a day. I still do not understand that other kids who were kicked out got more time than Becca. The team always said she would "fatigue" too easily and they did not want to stress her. The school people manipulate whatever to fit their agenda. Before when she was in school she was to be their full days despite doctors orders. Other times the team fought doctors orders and medical reports on her needing home instruction (the state only had to provide a minimum of two hours a week for homebound teaching). They still would not ad a secondary qualification to her Other Health Impaired certification on her IEP, we fought to ad Autism. They said her autistic tendencies were from her Noonans Syndrome, citing printed pages from the Noonan Syndrome Support Group. They denied many requests for new IEPs, they said she did not meet the States Autism Standards because she could talk. Later I learned that the state standards did not meet the Federal Guidelines. They have since come into compliance and she finally qualified at the age of 16 after four years of fighting.

I kept her home. I had taken her to out of our district that had a small classroom where they would meet her needs and mainstream her, and even got the district to pay for the paraprofessional hired by our nursing agency to go with her. We practiced going to school for over two weeks, and walking in by herself. She froze in the sidewalk looking up staring at the sign that said "School" frozen in her tracks gazing at the sign she peed her pants with us all watching. She had been dry since she was five years old, now at l4 and in 8th grade (46 pounds and 46 inches). The professionals diagnosed her with Post Traumatic Stress Disorder. She was afraid of schools.

I would continue to fight for her right to a FAPE, Free and Appropriate Public Education,
but the schools still do not have to follow doctors orders. If they do not have a program to fit a child like Becca no one cares. No advocacy organization would fight for Becca, she has had such little schooling, I have taught her everything I can. But having Mom creates dependency and I had to hire people to work with her. She has right to occupational and physical therapy but they deny it, I had to privately pay. They would not pay for her technology needs, I have.

For a child like Becca who is a survivor kid, who had the best the medical professional world had to offer, we brought her far. For the child who would not live to be two, she can read Tolkien with supports, but the schools goal was to decode first grade work.

There was no IDEA for Becca, No ADA, No FAPE. They destroyed my daughter's ability to trust teachers, school people, school. For years we had to stay home because of the districts policy if she was on homebound that if she entered a school building for anything else other than an IEP meeting she would not be schooled. I could not go to her brothers and sisters school events because I could not leave Becca. She could not go either. Only after we got the district to agree to home instruction after requesting mediation would she finally go into a building with the districts blessing.

We had for years to practice going to a school with Mom in tow. She still tells us how scared she is just to go to the school in Wisconsin to drop off her work. We left Michigan partly in search for schools that do a good job of meeting special kids needs. We thought we had found it, but the new district neglects her needs even further.

Becca is now 19, does not have a diploma. Never an apology from the school staff for failing to meet her needs and for causing her so much trauma and the year of bruises from repeated restraint for "crying". I had schooled my daughter, I did what was right for her. Many a parent has pulled their child from the schools because of the trauma of misused restraint.

At long last the practice may be outlawed. I wish I had the funds to head to Washington to tell the story, but the story of the parents who have lost their children due to schools restraint policies are much more powerful. I have been told by Becca's cardiologist, bleeding doctors etc. that the school could have killed her, but God protected her from the paraprofessionals mistreatment. But the psychological implications are still there to this day. She is lonely, she is sad that she will never get a diploma despite her rights in this country.

We did not fail Becca, schools did. We did not abuse Becca, schools did not by listening or being held to standards provided by Becca's Medical Treatment Team.

Not only should Washington Act on providing safe schools with tackling the issue of Seclusion and Restraint, they need to rewrite the laws that the Schools "MUST" follow doctors orders to ensure the safety and wellbeing of our fragiliest children. They also must ensure that the Advocacy Organizations and Educational Advocates who get funding from Washington, help Kids like Becca GET AN EDUCATION.

Becca's Civil Rights were violated, she has been given an education less than her able bodied peers, they did not follow her medical professionals recommendations, and they threatened and retaliated when complained upon. I could not afford the $100,000 in lawyers fees to fight the district and the state to get Becca her guaranteed rights to an education. They did not want to set prescident.

Becca had to settle for the FAIL FIRST education, prove to the districts time and time again what does not work for them to finally understand they were wrong. I at times had to refuse to comply only waiting for the District to have Child Protective Services at the door that they had finally had enough of ME fighting for Becca's Education.

I pray the Grass Roots Movement and the Autism Movement finally prevail, that No Child Will Be Left Behind like my Becca. I pray President Obama will care for our vulnerable children and help educate them with understanding. Under President Bush's Leave No Child Left Behind, left Becca and so many other children left home psychologically traumatized and educationally neglected because schools don't want them.

Tuesday, March 17, 2009

Go Fly A Kite

What do you do when it is a warm sunny 75 degrees and windy March day in Wisconsin?

Go Fly a Kite

With Becca's new Scooter she is enjoying the new found freedom to do all the things she would miss out on because of fatigue. I won't mention it to her that all this reaching is good therapy for her weak upper body strength.

Monday, February 9, 2009

The Weekend

The Beckster had a wonderful few days.. Those times when she has good days are so few and far between especially in the winter. One those good days she pushes herself and does not quit. She wanted to head out of the house, the sunny 40 degree weather gave her a hiatus from the hurting the cold and dampness can put in her joints and her muscles. You see everyday her little body hurts from the repercussions of her Noonan Syndrome. The doctors do not understand what others with the syndrome are describing, the leg pain, the burning, the constant headaches and the fatigue that many days allow her to just sit and vegetate. Add in her immune problems, everytime she goes out, she picks up each and every winter bug. For the past six years when she has been home for school, her winters have kept her healthier. But she still gets some of them but not as severe.

Friday we began the quest to Walmart to get her long awaited Space Buddies DVD. She had her Best Buy ad to price match at Walmart, found the coupon on line for saving $3.00. She had discovered that she had neglected to enter all our Disney Movie Rewards Points on the Disney site and spent a couple of hours entering them all. All 30 plus movies are now points on line. While entering points Beccas obsession for stuffed animals was fueled by the discovery that when you buy Space Buddies and enter your points, for the price of shipping and handling she gets two dogs free. We were off on a mission to Walmart for her DVDs.

At the register my tiny young lady caught the cashiers and customers off guard when she pulled out her ads and was tauting all the price match and coupon jargon of a thrifty expert. Her little professor legalistic autism shows its colors. The cashier remarked that he had never seen a kid price match before. Here we go again, they judge her smallness, they see her size, her frame and judge her to be ten again. It hurts her everytime someone unknowingly mention her age. She politely with a snap let him know that she is not a kid, and I explained that Becca is 19 and has a Noonan syndrome and has autism. So much for medical privacy, I have learned that in order to educate others and protect Becca I have to explain. It hurts her so much, people see her as a child, not the bright young adult she has become and no matter that it has been her whole life that no one will believe how old she actually is, she has never gotten used to it. I have taught her how to handle it, but in her heart, it is always a reminder that she is different.

The cashier caught me off guard as he explained he has aspergers and we all talked about his job and how he never thought he could make eye contact with people and chat with strangers but after high school he learned. Becca had listened intently and this young man made quite an impression on my daughter. She told me that she wished she could work at a job like Walmart, but her elbows wouldn't allow her to do the work. Her hands freeze, her elbows have contractures. She wants to work, but her tiny frail body will not let her.

Saturday she was out and about. Becca was out with me double coupon shopping impressing me with her quick math and money skills. She was finding deals for me, she had memorized all coupons and while I fumbled through my coupon binders she knew which page, how much everyone was and in a snap figured out how much everything cost. I still cannot believe, that I had struggled for over four years to help her memorize the her math facts. But on just one day it all clicked and she was able to memorize addition, subtraction, multiplication and division in just one week. She is fast on her money, she had spent an entire year collecting change with her ATM bank counting her money. Everytime she added a penny, nickel, or a quarter she started all over again. The practice has made her a mathmatical whiz, it was all in her own time, in her own way, and she learned. It amazes me, I am thankful, this was a child who was without oxygen for over ten minutes when she was two and a half months old. She had to learn to move her body again and the doctors told us she would have permanent brain damage.

She was so much help. She had the energy to help me unload the cart, and matched up the coupons with each item. When I needed something she ran to go get it. Becca running is almost unheard of, she rarely has the energy to do it. But Saturday was a good day. We came home and Detamara and I unloaded the Sequoia of my frugal finds while Becca recharged her batteries only to have her ready to head out somewhere. Somewhere? we asked. Jim and I knew she was wanting to just be out while she could and we headed over to Walmart to let her cruise the store.

We had nothing we had to get and Jim and I remarked watching her walk away how independent she has become. I remember a time where she would not venture from my side, her anxiety was always in control. She needed Mom. She did not need either of us. We watched her walk and with seeing her walking in open places and from behind that we realized that something is remarkedly wrong with her gait. She is limping severely. Last winter she had spent months in her wheelchair, hours of therapy for a tightness in her hip. She had had a joint bleed and she could not bear weight on it. A friend mentioned Becca's limp to me on Sunday and with all of us noticing the problem and her inability to do stairs of late, I will reconnect with the Rehab Doctor. Here we go again, another problem, another try to figure out how to help her. There is always something new with Becca, to understand, to support, to intervene to not loose ground. But as always, we live today and are blessed that she is still here.

Sunday she was tired, she had pushed herself over the edge and all that walking. She has a new scooter but the door latch on the Sequoia is broken again and we can't carry it with. I know that part of her next challenge is to learn that balance, to not push herself so far that she pays the price the next day, but when those days are so few and far between of late, I can't really blame her.

She spent the day reading and writing on her facebook. Facebook is her connection into her siblings and connecting with her few friends. Becca's life is lonely and isolated, it helps that she has a large family. They love her and are patient with her loneliness and obsessiveness.

She reconnected with a long lost friend. Inviting her friend to the movies Sunday night. She finally had felt well enough to go see Marley and Me. I have been wanting to take her since Christmas vacation but she never wanted to go. It was too cold and she didn't feel well enough to try. Becca loves the book, she listened to it while memorizing the words when she picked it for our next home school read. She loves Marley and dogs. Marley had arrived at in our quaint little movie theater just in time for Becca to get out on a warm weekend. Quite often on Sunday nights we like to catch a $5.00 movie to support the little theater and Detamara was herself and had to be forced to go to a movie. My daughter the homebody had to go out. With Dee's Fetal Alcohol Syndrome she likes home. A teenager who likes to be home and has to be grounded to go out? Her psychiatrist told her she has to go out and try new things. While Becca longs for wanting to go out with friends, Dee always has a reason why she can't meet up. Becca was excited and was counting the minutes and we had to push a grumbling l6 year old into the car. The two of them met up with Becca's friend at the curbside and the girls ditched their Mom and Dad while we paid for the tickets.
She was off, chatting away and Dee followed.

Jim and I teared up, Becca was at long last doing something with a friend. A moment which never happens.

She had what others take so forgranted, friendship and being included. By the way, Detamara as always after the fact had a great time. My remark, I told you so.

Monday, January 26, 2009

Who Cares About Me

written in 1992 on behalf of my daughter Rebecca


I am but a little girl
Who's life has taken a different twirl
I am disabled, that's what I'm labeled
I am trying so hard to be able.
I am fed different than my friends each day,
for me it is the only way.
Mom worries for that day,
that nobody will want or care to pay.

They say dollars have all but dried.
They say everything needs to be cut.
The programs that help me have to be shut.

The doctors and home healthcare help me out.
My therapies and medicines I cannot be without.
My braces and wheelchair help me about.
My glasses I cannot see without.

School budgets are already stressed.
My needs are trying to be met.
It costs a lot to educate me.
With so many students,
How will anything be left for me.

I am a little girl who fights to be alive,
But without healthcare, I won't survive.
With all the wonderful care
I have thrived.
My family and I have always strived.

Without help we won't be able to cope.
We cannot give up hope.
There is a choice.
Just listen to one little voice.

I am just a little girl who wants to be,
as happy, healthy, the best little girl I can be.

copyright 2006 Ann Yurcek
An excerpt from Tiny Titan, Journey of Hope

The Cost

This weekend I was visiting my favorite frugal websites and discovered a post about a family that is auctioning off their belongings to pay for therapy and services for their two special needs children. The website asked for people to help by donating a couple of dollars to defray the cost of their childrens services. See the families story here

As I read the comments, I was heartened by messages of those individuals who donated, but I was struck by the misconceptions of several of posts. Several thought they did not need the help because early intervention and the schools would provide therapy. They thought they were begging for help or using the media. But I understood their dilemma. I know just how hard it can be to obtain help as I have often had to battle insurance companies, schools, bureaucratic red tape for Becca and also my adopted children with Fetal Alcohol Spectrum Disorders.

Years ago when Becca was a baby, we had insurance, and found ourselves the victim of two insurance companies and no one would claim her, my husband would lose his job because of our baby's bills. We had to fall onto Medicaid and into poverty to get Becca's hundreds of thousands of medical bills paid. I was paying for daily parking at the hospital and after months of not eating to pay for gas and parking, someone finally told me that they had forgot to give us our free parking voucher. Jim and I were skipping meals in order to give what little food we had to feed our five other children. I just told them I would eat later and dole out the rest onto their plates. Our heat was turned off, we boiled water on the stove to bathe our children and wash dishes. Minnesota falls are seldom warm and our heat was finally turned on right before Thanksgiving when we were finally reimbursed for our mileage to the hospital. We had to live on a mere pittance to qualify for Medicaid at that time and only allowed $800 a month for a family of 8. Our house payment was $822.00, we still had other bills. What were we to do? We did whatever it took to help Becca.

No one told us about other programs, I had to learn as I went. The complexity of programs, what it takes to qualify, paperwork, appointments, luck of the draw when it came to waiver services, all just to help our Becca. I had to do all this while in crisis with a critically ill baby, and five other children who needed a Mom. There was not enough time in the day, and in time I learned that my job as a Mom was first, but I had to have another full time job, advocating and fighting for my daughters care.

No one knew. Those closest to us were unaware until years later. Inside the walls of our suburban home we were struggling, we were ashamed that we could not afford to pay for the care of our sick baby. We were judged by the workers at the social services office that we did not belong there, we had a job. We were judged by our neighbors for not driving the newest vehicles and our children did not have all the latest toys, sports and classes, my children skipped lunch because they did not want to be teased because they were on free lunch. Reaching out for help is not easy. It takes courage.

We had helped Becca survive, and I fought long and hard for her care. The medical world has in recent years become harder to navigate. I never used to have to work so hard to get what she needed, but today it is becoming increasingly complicated. When I entered the mental health when we adopted our 5 children I never dreamed it would be this hard. It is literally impossible to get the therapy our children. When Becca was diagnosed as autistic it took 6 years of advocating and appeals to get the school district to acknowledge the diagnosis.

Reading the post, watching the news article, I knew that I could help. I would help this family by acknowledging that our children's catastrophic medical and mental health needs are not being met. It takes a full time job, and often a law degree to find funding. Sometimes it requires creative ideas to meet our children's needs. I talked to a parent who has a little boy with severe cerebral palsy and she talked about the many times she has had a garage sale to raise money for something that he needed. She at times has had to do fundraisers to obtain a piece of equipment that neither the insurance company or the medicaid program would not pay for.

Doing whatever it takes for our children is just part of the job description. Sometimes it is fighting insurance companies, falling into poverty, selling off our belongings, going without. But what is the most hard part of the journey, the judgment of others who do not understand just how hard it all is. These tough economic times and our crisis in health care and mental health services and therapies for our children with special needs. The schools are stretched and it is becoming increasingly difficult to get adequate help for our special needs children. But those children grow up and we need to help them with the therapies, services, and teaching to thrive as adults.

What can we do to help? Sometimes it takes strangers to donate a few dollars, others to share a listening ear, sometimes just a hug, other times a bag of groceries or even buying a house for a family who lost everything due to children they raise. We need to speak up to reach out and care, to support, not judge or just ignore. A genuine smile when you see a special needs child or mom will go a long way to say you care.

Thank you to Angie at Baby Cheapskate for reaching out to extend a helping hand to this family and it is my privilege to help. I have offered to give anyone who donates $25.00 or more a free copy of our families story "Tiny Titan, Journey of Hope". I can help raise awareness of just how hard it all is and share the stories of our Angels who helped us along the way.