31 for 21-day 6-Arizona Early Intervention Program (AzEIP) Family Cost Participation

Therapy and more therapy, all three girls see three different therapists, we are so lucky to be able to have our ST see all three girls, ditto for our OT and the PT sees both Amanda and Kara. Our medical insurance covers some of the cost, Long term care, a federal program, covers the rest. Without it, I doubt my girls could get the therapy that makes all the difference in the world to them. We could not afford to pay the high fees ourselves, not many people can. We want what is best for them, we are their parents, we love them. We also pay very high insurance premiums and do not understand why the insurance cannot cover more for our girls, but they will not.

Meghan began physical and occupational therapy at age 4 months. Kara and Amanda did not begin formal therapy until they were 3 1/2 years old. Amanda and Kara had to learn most of the skills Meghan did when she was an infant-toddler. Their caregivers rarely took the time with them because in their countries, they truly did not believe the girls had the ability to learn. The chasm between Meghan's abilities at that age and theirs is wide and deep. Kara is filling the gap more quickly than Amanda, but Amanda does have Autism as well, and that gives her a few more challenges.

We had both little girls evaluated by Child Find after they came home. Both girls were given the preschool severe developmental delay "label", compared to Meghan at who age 3, was listed as mild preschool delay on her paperwork. I do not believe any of them are smarter or more capable than the other, each has her own strengths and weaknesses, Kara and Amanda were more delayed due to their life in the orphanage.

I know that therapy helped Meghan, and we instituted her daily therapy "homework" into all of our play as well. Parents are always teaching their children, so truly, it was not much different than parenting kids that did not need the extra help. The main difference ? We had the guidance of therapists, and they had the expertise concerning her delays and showed us how to help her best. In our case, early intervention made a world of difference, we have children to compare Meghan with, two little girls who never received any.

I am sharing this for a very important reason, for those wondering if early intervention makes a difference in a child's development at all. I am addressing the Arizonan legislators, the people who voted to cut the DES budget who oversees DDD programs, who in turn wanted to stop all early intervention in 2009 to cut their own budget. That February there was a vote by Arizona legislators to cut numerous essential services for countless Arizonans, their goal to save the state money on what they considered expendable services. Of particular importance to parents whose kids need the extra help were these cuts:

Eliminate services for 850 infants and toddlers with or at risk of a developmental delay $1,608,800.

Reduce or eliminate in-home services for 4,000 children and reduce or eliminate support services and allowances for children in out-of-home care $15,918,700.

Of course there were many cuts that affected older children as well, and many adults. That was before a public outcry halted their plans. The Arizona legislators and DES found out they could not get away with it, there were marches, protests, emails, phone calls. There was a clear message coming from parents, don't mess with us, we are used to fighting for our kids.

How could they just do away with early intervention? Even they admit that it is essential, important, so what were they thinking? From the azEIP website :

Why is Early Intervention important?

Early Intervention is professionals working in partnership with parents and families of children with special needs, to support their children’s growth, development, and learning. Research tells us that the first three years of a child’s life are critical years for learning. Early care and education have a long-lasting impact on how children develop. During a child’s first three years, it is important to focus on a child’s developmental needs and take advantage of your child’s natural ability to learn.

The state website says this, but the legislators and DES decided this was all horse hockey? Help me out here, how can they deny that early intervention is essential to children who need a little more help? It is simple, they feel children like mine are a drain on state resources, but if their needs can be met by federal dollars without the state needing to spend anything to get those federal dollars, then there may be some help available. If not, too bad?

Read more:

http://www.azcentral.com/news/articles/2009/04/16/20090416dessuit0416-ON.html#ixzz11gr5l8xo

They felt that there were no measurable results, and wondered if it was worth the cost to our bankrupt state. A federal judge ruled against them and halted their plans, but did not stop them, instead of cutting services, they have instituted their brilliant plan of :

Arizona Early Intervention Program (AzEIP) Family Cost Participation

Early intervention was always free in AZ, the attending therapist billed the families medical insurance first and then the state paid the difference. However, most insurance companies would not pay for therapy for children born with Down syndrome, some saying it is a pre-existing condition, as if being a human being is a pre-existing condition, and others stating they only pay for therapy for someone who suffered an injury. Often the state paid the full amount. The costs are listed above, in the millions, not billions of dollars.

With the new health care reforms, I do not believe any insurance company will be allowed to deny coverage for children like mine, which should be good news to the states who are literally bankrupt right now:

http://www.disabilityscoop.com/2010/09/22/rollout-of-health-care/10336/,

The state will now charge families for early intervention therapy on a sliding scale, and truly the only families who will not pay a cent are low income families (those on food stamps-receiving welfare checks). I have friends who are affected greatly by these changes. For instance, for families making around $45,000 a year, each therapy session will cost around $80 (estimate). If you have multiple children receiving therapy like we do, you pay only for the child who gets the most help, the most expensive therapies. That would mean a family whose child gets 3 therapy sessions a week, like mine do, would pay approximately $240 out of pocket a week for therapy, which is a whopping $960 a month. We could not afford it with our already strained budget. I am betting other families cannot either, at least not for long; they could use savings and take out loans I suppose. It is all about saving money, isn't it? That is what we trade the futures of Arizona's disabled children for, saving money!?

My friends who are therapists are losing clients, and income, we already have a therapist shortage here, the results of the first budget cuts. We waited 2 years to get a PT for Kara and Amanda because there are not many left in the public sector and many have moved away.

I understand there is a prevailing attitude that people with cognitive and physical disabilities are a drain on the economy, a feeling that they take more than they give, the squander the good ole TAXPAYER MONEY with their incessant needs, and are otherwise called BURDENS on SOCIETY. (shouting, not me?) Something an old pediatrician said to us about Meghan when she was less than 12 hours old, that she would be a burden on our family, perhaps he meant, on himself or society? So it got me curious, what do they mean, a burden, how? I looked up the word burden and the very first definitions states: Worrying RESPONSIBILITY, a difficult or worrying responsibility. **the burdens of parenthood** Hmm, so a burden is a responsibility? So then, what is the definition of responsibility? “The state, or fact, or position of being accountable to somebody or for something.” It seems to me that being burdened simply means that people who do not want to care or to do anything are FORCED to care and to act. Laws force them to do what is right for their fellow citizens, the fact that we had to pass laws to get our children and loved ones released from institutions is not lost on me.

Americans with Disabilities Act, do you know that politicians are trying to do away with this law? Oh yes, it has been in the news. Why did they law get written? It simply is so unfair to businesses and THOSE people have the nerve to sue those businesses for not having access, or bathrooms they can use, the nerve (yes, being sarcastic here). They lose profit if they pay a contractor to put in an accessible restroom after all, oh, those people in wheelchairs...

I have been reading a lot about disability law lately, some right websites, some left, many in the middle, this one is said to be FAR left, well, according to those who are far right LOL. http://www.raggededgemagazine.com/garrett/scope.htm and the following passage is from their website:

The Americans with Disabilities Act Findings: People with disabilities as a group, occupy an inferior status in our society, and are severely disadvantaged socially, vocationally, economically, and educationally . . .
. . . have been faced with restrictions and limitations, subjected to a history of purposeful unequal treatment, and relegated to a position of political powerlessness in our society, based on characteristics that are beyond the control of such individuals and resulting from stereotypical assumptions not truly indicative of the individual ability of such individuals to participate in, and contribute to, society.

The continuing existence of unfair and unnecessary discrimination and prejudice denies people with disabilities the opportunity to compete on an equal basis and to pursue those opportunities for which our free society is justifiably famous.

Fear , discrimination and prejudice, issues that have driven societies to do terrible things to people they feel do not deserve to live the same entitled life that they do because they view them as inferior, or perhaps they convince themselves of such, to justify their actions. Do you know there used to be laws in some states requiring people report families who tried to keep their children with cognitive delays home? Their neighbors would report the child and lawmakers would come and forcefully remove the child from their home, putting them in mental institutions. The parents had no say, often being forced to sign over guardianship of their child. There are thousands of stories you can find about this, it happened up to the 1970's, not that long ago really.

Those of us who have children with Down syndrome do not see them as a burden (most of us, I know some do, and often give them up for adoption), they are simply our children and we will protect, support, love and guide them just as we would our other children. To think that someone would come and take my daughters away from us wrenches my gut, can you imagine how you would feel? How they would feel?

However a person feels about this issue, there are federal and state laws protecting all people with disabilities now, but somehow many states, not just AZ, are bypassing some of them, particularly where medical and educational help is concerned. I am sure many high paid lawyers are helping them figure out how, finding loopholes in the law. Thankfully institutions no longer exist as they did up to the 70's, most were torn down after it was discovered that residents lived in deplorable conditions. Out of sight, out of mind, right?

It will be curious to see what happens in the ensuing months as more and more families are forced to drop therapy for their children due to the cost. I feel like we are taking giant steps backwards in disability rights, it worries me a bit, change happens so slowly sometimes, you miss the clues that something serious is happening, is this a trend? It is unacceptable to me that this has happened here, but then a lot of what AZ government has done lately is shocking to me.

What about the children in all of this? Will it change their futures, will they accomplish all they could have if they had proper help, or will they truly be that burden everyone complains about? If they are, who is to blame?

31 for 21-Day 2 _Having Meghan, changed our lives for the better

So sorry for the belly shot, gotta love stretch marks huh? I was at home waiting for Tom to get ready to take me to the Birth and Women's Center to have our new daughter.

Before we had Meghan we were just a regular family, all of us relatively happy, no major health issues, just working, living, existing, challenges were there, but were not major ones. We were always on the go, always doing something, Tom or I were always taking one of our kids somewhere, the perpetual mom and pop taxi. I was working a lot, I had two different jobs when I was pregnant, fully intending on returning to both after Meghan was born. Tom was teaching in a school that he enjoyed, the children were sweet, they loved him. Everyone we knew was happy about our newest addition, they gave us baby showers and eagerly awaited her arrival. We got teased about not knowing what causes pregnancy, we got teased about our ages, but no one openly expressed concern in our social circle about their fears that we would have anything but a typical child, no one seemed to be worried except for me, because of dreams I had that as soon as Meghan was born, our lives would change forever.

A question we get all the time, did we know beforehand that Meghan had Down syndrome, and the answer is no, but we knew at my age, 41 at her birth (my birthday is in November) there was a risk. Despite the risk for Down syndrome, we refused amniocentesis, because we knew the test was not about knowing she had T-21 so we could be prepared to parent her, but instead was done to cover the OB's butts (malpractice) and to give the parents the choice of terminating the pregnancy. I will concede that there are a handful of OB's who truly want to help parents prepare, but I have spoken to hundreds of moms with prenatal diagnosis, and those doctors are seemingly rare. We opted for ultrasound monitoring instead, sure they miss things, but they are not invasive and are not likely to cause a miscarriage. We were not going to risk our infants life, and we were eagerly awaiting her arrival.

Even though my water broke (up high, just a trickle), my labor was slow to progress, so true to natural childbirth, they had us walk, we walked and walked, we came back to be checked, still at 3 cm, so they said go ahead and get lunch and come back a little later, I have back labor, I always have, due backward tipped uterus according to my doctors, so going for lunch was a bit of a painful experience. Back labor often makes a woman feel like her labor is further along than it truly is.

We went to Village Inn, I got my favorite sandwich, the Avocado Swiss Chicken, and we shared a piece of Key Lime Pie. Yes, when you have a baby with midwives, they actually let you eat during labor, compared to my first three children with obstetricians who had strict rules against it, who gave enemas, and shaved, well, you know, all so terrible, torturous, and sadistic...LOL. I hated giving birth in hospitals in the late 70's and early 80's. Hence midwifery for the last three by birth children! Oh yes, I know, the prohibition against eating is in case of complications and the need for a Cesarean Section, always wanting to cut us open those OB's (joking) The midwives felt my birth was hours away, but giving birth is hard work and having food to keep me strong was not a bad idea.

We got back to the birth center a few hours later, we actually went shopping at Toy's R Us too, and still no change, my labor progressed so slowly, likely because it had been 8 years since I had a baby, so the fast labor a woman could expect from having 5 children previously did not happen for me. We walked for most of the day, from 10AM until about 6 PM, of course stopping for lunch along the way, we definitely got in our exercise that day.

They gave me some black cohosh around 5 PM to speed labor along, talks of going to the hospital to have Meghan were beginning, since the water broke early that morning, infection was a concern, but her heart rate stayed constant and strong so they let me stay where I was. Even though I had some amniotic fluid leaking, the amniotic sac had not burst completely and doing that around 7 PM made labor progress at breakneck speed, if you have had back labor, you know how much fun it can be, midwives do not give epidurals or other pain relievers unless you give birth in the hospital, which we did not, so no drugs for mommy. Dilation went from 3 to 10 in two hours. I was relieved to get to the pushing stage. I am sure most moms understand that!

Meghan was born at 9:02 in the evening, after lots of slipping and sliding in a jacuzzi bathtub, I managed to help her come into the world. Tom helped with her birth, getting her shoulders out and holding her as she slid free. They placed her on my belly and I looked into her face and thought "Oh my God, she has Down syndrome" I knew immediately. Lots of thoughts raced through my head, "What will happen to our lives?" ,"How will people treat her?", "Will she ever read or write?", followed quickly with a prayer; "Please God, do not let anyone hurt her because she is different". All those thoughts were in the millisecond it took me to comprehend that her face did not resemble her siblings at birth, and it was clear she had Ds, crystal clear, I never had a doubt. I looked at her palms, saw that single crease on one, looked about the room, did anyone else see what I was seeing? I handed her to Tom and in that unspoken language of people married a long time, he read my face, looked at hers and he knew too.

Meghan after her birth, despite all that going on in my mind, I loved her instantly, and my mama bear protective impulses kicked into high gear, no one had better ever try to hurt my daughter.

Meghan's birth story is on the pages section of this blog. I wanted to share a bit about it here, but what I really want to talk about is how Meghan changed our family...for the better.

When she was an infant and growing slowly, having issues with her trachea, her heart defects and some pulmonary hypertension ( minor compared to some children with Ds, a tiny VSD, bit larger ASD and a PDA) it seemed like all we did was take her to doctors appointments, because of her trachealmalacia she had her immunizations done on the expedited schedule. instead of 2,4, and 6 months, they were given to her at 1,2 and 3 months. I wish we had not been so hasty and thoughtless about that, her poor immune system could not handle it and I believe it is part of the reason she developed an autoimmune disorder; alopecia aereata. Though it is sad to see her lose her hair over and over again, at least it is not life threatening and for that we are grateful.

Meghan had major hair loss on her right side but it is filing in, it is now falling out on the left again, and it goes on and on. She is also completely hairless except for the hair on her head, eyelashes and eyebrows, both of which have also fallen completely out along with her hair.

When Meghan was a tiny baby, we kept our hands washed all the time, they were dry and cracked because as soon as we applied lotion, we had to wash them again. No one who was sick was allowed in our home, Meghan was not allowed in day care, her trachealmalacia would worsen if she caught a cold. It could kill her if she got sick, we had to be very careful. Her stridor was so bad she terrified interns. We got tired of telling them she always had audible breathing. We took her to a teaching hospital and never seemed to see the same pediatrician twice, they also treated her like a lab experiment, bringing in doctors to check out her palmar crease or her epicanthal folds, it was making me angry.

I complained at home about my displeasure about the conduct of Meghan's team of doctors, my children heard most of it, as Tom was working. Julia came to an appointment with us because she thought we were off having fun without her... while they were busy checking the back of Meghan's head Julia said "She's not a lab rat you know" and told them loudly: "And her name is MEGHAN". Obviously I was complaining more than I realized, and Julia set them straight. I was still feeling emotionally raw at that point, and more timid than I normally was, even though they meant no harm, their behavior was insensitive, Julia saw what mommy was talking about and bless her heart, she wanted to pout a stop to it. I was happy to leave their practice and take Meghan to our primary care doctor, who was so much more positive and loving towards Meghan.

Meghan was and is a very determined little girl, she had to be just to get her little body to move, we had to teach her body to hold up her head, to rollover, sit, crawl, stand. Once she began to walk, her gross motor skills got better and better. Her overall development was different, slower, from her 46 chromosome-d siblings. Seeing her try and try again made me admire her gumption, no one could call her a quitter.

We also welcomed (usually with happiness, sometimes not) many early intervention therapists into our home. We joked that Meghan was the easiest child of our 6 because we had so many people helping us with her. We rarely had help in our other children's early years from family or friends, and having so much support with Meghan was a revelation for us. I could see that it was easier for my friends to have parents to fall back on to help with their kids, mine were gone and Tom's were too far away.

It was a gift but it also felt intrusive at times, the crux of therapy in the home is simply having people there several times a week who are not related to you in any way, there are clashes and uncomfortable moments. Some are ultra-professional and goal oriented and forget the child involved would not adhere to their rigid schedule, others were more open and caring in their approach. Finding people who are aligned with your parenting style can be a challenge too. I have never been able to abide therapists who try to force a child to comply. Want to see the definition of stubborn, try to force Meghan to do something, it is not pretty and the tantrums she can throw if you push tooo hard are explosive.

Meghan has had therapy since she was 4 months old, we took a break when I was getting chemotherapy and I was just too worn out to have them come in our home. Only one person has been with Meghan from the beginning, her speech therapist, who came when Meghan was nearly 2. There have been others who came, clashed and left, mostly OT's, who for some reason Meghan does not like, and who have been the most unbending and unreasonable of all the therapists we have had in our home. We are lucky to finally have one who can "go with the flow" with all three girls while stilll accomplishing her goals. You cannot be rigid when working with our trio. LOL

Learning to navigate with DDD personnel and services; Division of Developmental Disabilities and all the different people they have assigned to us as service coordinators has been a constant challenge. Some have been extraordinary and wonderful, some have been simply terrible. Thankfully we have someone wonderful now. I will talk about that on another day, as the state budget and how it affects services and attitudes of Arizona taxpayers deserves it's own post!

Suffice to say, all of us get PH D's in Down syndrome by the time our children enter school. If we did not know what to do when our children are born, we learn along the way, usually with help of parents who have older children, sometimes by making mistakes, but we emerge years later as completely different people than who were were when we first heard our child had Down syndrome.

How did having Meghan change me? You know I cannot even remember who I was before she was born, I have a vague recollection of that person, I know she was thinner, more fit, had more time to pursue hobbies and spend time eating lunch with friends...I think she spent too much time thinking of frivolous things (clothing, hair, the latest gossip) and did not take time to have many deep thoughts or conversations. She liked watching Oprah and Regis and Kelly, (two shows I can barely stand now). She never thought she could be strong enough to adopt either...who was that girl?

Will conclude this tomorrow.

31 for 21 day 10-Down syndrome and therapy

Now I have posted every day, I just forgot to tag the posts, so does it still count? I hope so :o)

Ever have one of those weeks, it was good busy, with a birthday celebration, but also stressful, as we had some issues with a therapist and they were resolved by returning to the previous therapist (her supervisor actually). Therapists mean a lot to our family, but they also need to meld with us and sometimes they clash, as was the case with the one that has been replaced. I hate confrontations, altercations, or any drama in my life, but I guess there is a time and place for it. I am cautiously optimistic that things will get better.

Having a child with Down syndrome is such a wonderful blessing, and it is also challenging, especially when you multiply x3. Sometimes I wish therapists were not part of our lives at all, but then we would never have met some very special ladies, and we do care for most of them. The others we tolerated and finally had to let them go. I should really say I tolerated, because Tom never met some of them.

When we welcome someone into our home to work with our children, we need to trust they have their best interests of our children in mind. The manner in which they speak to, react to, and teach our children is important, now with all three girls here, they tend to “interfere” with the therapist working with a sibling by touching hair, sitting in laps, hugging or otherwise getting in the way. The therapists I respect are those who work around and with my other two girls, those that say, “I am busy, this is not for you, please stop touching me”, or anything similar already lose points with me, and I do keep track, my girls are too important to let these things go. I do what I can to keep the other two busy, but they are curious about what is happening and other therapists allow them to participate, so they think all of them will do the same.

Another pet peeve I have are childless therapists trying to talk about parenting, if you have never been a parent, you can stop talking. I will also say, if you have just one child, you have no idea what it is like to have two, or three, or in my case eight. I suppose the unfortunate therapists have enough of children working with them all day, but it makes me feel conflicted when they say they never want kids, why then do they want to work WITH them?

Additionally, if the therapist only sees the part of my child they are working on, say feeding therapy, but does not consider the WHOLE child, they lose even more points with me. Children, like adults, are multifaceted; you simply cannot ignore everything else to work on one thing. My adopted girls have many issues from being in orphanages, they have trust issues and it is something we try to build up every day, one bad day with a haughty or indifferent therapist sets them back for weeks. We are still bonding with our littlest girls, I will not allow someone with a checklist, and agenda, jeopardize our progress with them. Their emotional health is very important to me. Meghan also cannot tolerate detached therapists, she knows right away if they are not sincere. She can be a stinker with the ones she loves too, she has had too many years of therapy, and admittedly knows all the buttons to push when she chooses to…

Finally, when I feel the therapist is merely collecting a paycheck and does not care for my girls, it is time for them to go. Professionalism to them means remaining aloof and feigning cheerfulness when they work with my children. It is painfully obvious that they have no emotional investment in what they are doing. I do not want people like near my children, however genuine people with kind hearts and caring attitudes are welcome.

One more appointment down, three more to go this week

I took all three girls to Child Find today, I honestly do not have a babysitter for my children, no family or friends to watch them. My friends all have FT jobs, at least those who would watch them, so do my sons. So we always go as a huge group. We sure get a lot of attention when we go places.

Inevitably I am asked if the girls are my grandchildren, makes me feel like I am 60, actually, it makes me feel really bad, but that is vanity speaking, isn't it? I always tell them the girls are my daughters, then they ask if they are adopted, I say yes, two of them are, the oldest is homegrown. I like the looks on their faces, shame on them for assuming huh? LOL What I do not like is people telling me they admire me or that I am special because we adopted the little gals. I don't know why it makes me uncomfortable, but it does. It bothers Tom too, we did not adopt our girls for attention or to be admired for it, we wanted two more children with Down syndrome like our Meghan, I don't think anyone understands how incredibly blessed we feel to have them in our lives. Sometimes I can't believe they are here, it is such an amazing gift to be allowed to adopt.

The ladies at Child Find are very sweet, funny there is not one man working there. Kara went to Child Find in April and again in June, they were all amazed at how much she has grown, we are too, Kara is twice the size she was a year ago. They thought Amanda was just precious, and of course we do too. Meghan went through the office closing doors...I am telling you, this week is not a good one for her. I don't know why, but she is being a peel.

Amanda will go back the end of November for her evaluation, I suppose we just have to accept that waiting for all the services she desperately needs is on someone else's timeline and not hers. (sigh) Can I say, I am so very weary of doctors appointments, and yes, we knew having three with Ds would mean multiple trips to various specialists, but I want one week where no one is sick and we do not have to go to any doctors offices for any reason.

This week we went to the audiologists office, we were there for 2 1/2 hours, today we went to Child Find, tomorrow morning Kara and Amanda see the pediatrician to get their ears checked, and Meghan has speech therapy in the afternoon. Friday Meghan has her swim lesson. Sunday we are looking forward to, it is our Buddy Walk!! We get to take our two new daughters and they finally get to meet so many of our friends.

We got great news about our stroller, SANDS (Southern Arizona Network for Down Syndrome) is purchasing the stroller for us as part of their Give it Back program. It is such an amazing gift for us, and we know that Lori will need her stroller soon for her two new children. Lori lent us her double stroller a couple of months ago and with all the appointments I have gone to alone, it has been a Godsend. Lori, thank you so much! Sheila told me about this company, she will need a stroller for her three too.

I emailed Phil at Adventure Buggy Company after looking at all the other strollers available for our kids, if they held their combined weight, the wheels fell off, or they got stuck while going through rocky or sandy places. I have spent two months reading the descriptions and comments about pretty much every stroller made in America, and frankly I was not impressed with those that we could afford with the little bit of money we managed to raise to purchase one ourselves.

A heartfelt thank you to SANDS for helping us get our stroller. We are thinking of getting the toddler seat later on for Amanda, and letting Meghan and Kara sit in the main buggy, each child can weigh up to 55 pounds, and Meghan is still under 45 pounds.