Excerpt From....Message from Archbishop Chaput: The disabled and the sanctity of life

Parents of children with special needs, special education teachers and therapists, and pediatricians who have treated children with disabilities often have a hugely life-affirming perspective.

Unlike prenatal caregivers, these professionals have direct knowledge of persons with special needs. They know their potential. They’ve seen their accomplishments. They can testify to the benefits – often miraculous – of parental love and faith.

Expectant parents deserve to know that a child with special needs can love, laugh, learn, work, feel hope and excitement, make friends and create joy for others. These things are beautiful precisely because they transcend what we expect. They witness to the truth that every child with special needs has a value that matters eternally.

Raising a child with special needs can be demanding. It always involves some degree of suffering. Parents grow up very fast. None of my friends who has a daughter or son with a serious disability is melodramatic, or self-conscious, or even especially pious about it. They speak about their special child with an unsentimental realism.

It’s a realism flowing out of love – real love, the kind that forces its way through fear and suffering to a decision, finally, to surround the child with their heart and trust in the goodness of God. And that decision to trust, of course, demands not just real love, but also real courage.

The real choice in accepting or rejecting a child with special needs is never between some imaginary perfection or imperfection. None of us is perfect. No child is perfect. The real choice in accepting or rejecting a child with special needs is between love and unlove; between courage and cowardice; between trust and fear.

That’s the choice we face when it happens in our personal experience. And that’s the choice we face as a society in deciding which human lives we will treat as valuable, and which we will not.

This Sunday, January 22, marks the 39th anniversary of Roe v. Wade, the Supreme Court decision that legitimized permissive abortion around the country. More than 45 million abortions later, the damage of that decision continues to grow — undermining our reverence for the life not just of unborn children but of the mentally and physically disabled as well.

We need to understand that if some lives are regarded as unworthy, respect for all life is at risk. We should pray that Amelia Rivera gets the help she needs, and that God surrounds her parents with the support they need.

And especially this week, more than ever, we should recommit ourselves to defending the dignity of all human life, no matter how “flawed” it may seem in the eyes of the world.

I Still Would Have Chosen You

I STILL WOULD HAVE CHOSEN YOU
If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you... ...

... If God had told me, "This soul would one day need extra care and needs", I still would have chosen you
If He had told me, "This soul may make your heart bleed", I still would have chosen you
If He had told me, "This soul would make you question the depth of your faith", I still would have chosen you
If He had told me, "This soul would make tears flow from your eyes that could fill a river", I still would have chosen you
If He had told me, "This soul may one day make you witness overbearing suffering", I still would have chosen you
If He had told me, "All that you know to be normal would drastically change", I still would have chosen you

Of course, even though I would have chosen you, Lillian, I know it was God who chose me for you.

Lilly's Story. 23 months.

Well, my sweet Lilly is turning two next month.

Looks like she's getting a party. And I'm getting a good old fashioned breakdown.

It seems, that every time a birthday, special occasion, or milestone marker comes around, I go all crazy. I panic. I question myself. I question her progress and development. Am I doing enough for her? Did I push her enough this year? Should I have sought less traditional therapies? Seen more specialists? Will she ever walk? Will she ever talk? Will she ever eat normally? Is she okay where she is right now? Am I okay where we are right now? Will I be okay if these things never change? Because with a rare disease like hers, that is a strong possibility.

We spent this entire year hospital-free and are officially on maintenance appointments for all of her doctors. She is finally on well-baby only visits with her pediatrician. She had previously seen her every 4 weeks for weigh-in's.

We've added a few medicines, like Vitamin D supplements, and Sodium Citrate to control her acidosis. (acidosis of the blood can cause your body to create kidney stones) Her potassium has remained at the high end of normal without increasing the Fludrocortisone that she takes to control it. .(she is currently only taking 1/2 tablet a day---eventually she will take the whole pill)

Her kidneys are still very small. Her left kidney is only in the 13 percentile for size. Her right is smaller than her left and functioning okay for now. But they will keep an eye on this because having one small kidney can eventually lead to high blood pressure. If that were to happen, she would need to have the right kidney removed. There is also some significant scarring on her kidney's from all of last year's infections. Only time will tell on this.

She is now 23 months old and wears 12mo-18mo clothing. Weighs in at 20lbs and is about 31 inches tall. She wears a size 4 shoe. She is now the size of a small 1 year old. Just recently we were able to finally turn her car seat around to face forward. That was a BIG day for all of us!

She has been considered disabled by the state of NY and now receives special assistance on a Medicaid Care At Home Waiver. This is a program, where if you qualify, they assist you in effort to help keep your child at home and out of a group home or other full time care facility. This is a true blessing to our family. I cannot imagine her being anywhere but here with us.

She still sees her therapists through the state funded Early Intervention service. Her OT, PT, Speech/Feeding, Special Instruction, Deaf Teacher all come each week. Every weeks she has at least 12 hours of therapy. And although, her doctor's appointments have spread out, we still see a lot of specialists for check ups, ultrasounds and blood work on a weekly basis. She currently has 13+ doctor's.

She now has a gait trainer otherwise known as a medical walker. She is running in it now, from one end of the house to the other. Moving from room to room. Plopping down in front of her favorite tv shoes. Other than the fact that we are going to have to spackle and paint every single corner....we are ecstatic to see her getting around!!

She loves books and is learning to turn the page to see the next picture. She takes pieces out of puzzles, and shapes our of shape sorters. She loves spinning toys and pushing the buttons to create sounds and lights. We just got her a Hello Kitty karaoke machine, because she dances (sways) when the music is turned on...making us think she really likes it! She pops bubbles and shakes rattles now. She lifts her arms to say 'pick me up'. And although she doesn't crawl, she has learned to turn herself away toys, games, people she doesn't like.

We have brought in an OT that specialized in sensory therapy. Helping to connect/organize some of the neurological pathways to function better. She has recommended a weighted blanket to help her sleep better, an indoor swing to stimulate her, and shown us many activities that we can do with her to increase input for a non-mobile child. I am looking into animal therapy (horse, dog, etc) to see if that will help to move her development along and fighting my 1st appeal with Cigna to get her approved for an intensive feeding program at the children's hospital. (at the moment -they are only willing to approve her for 3 feeding sessions per LIFETIME!)

Because the Early Intervention program only lasts until your child is 3, at the end of this year we will start to discuss the special needs pre-school program. They will conduct an evaluation of her cognitive and developmental level. We will then visit and research our school options and eventually decide where to send her. Her therapists will then see her at school instead of in our home. All of this is both exciting and incredibly terrifying. You see, when you have a child that cannot speak, it is difficult to know exactly what has happened throughout her day. What if someone is mean to her? What if she is left alone? What if someone makes fun of her? Or worse, hurts her? Ahhhhh! I can't even THINK of this without tear's coming to my eyes!

This year I feel like we have graduated to the next level of being a special needs family. Although we have a long way to go, we are no longer rookies! We made it!!!!

The R Word

‎"re·tard n. Offensive Slang
1. Used as a disparaging term.
2. A person considered to be foolish or socially inept."

By definition, if you are using this word, the only person you are defining, is YOURSELF.

Do not use this word. As a joke, or not. In reference to those who are or are not, developmentally delayed. To their faces, or behind their backs. Do not use this word. Ever.

Remember, that first of all she is my child.....

Remember that she is, first of all, my child.

Let me see her smiling in her sleep and let me think about how beautiful she is...

and not about how delayed that smile was in coming.

Help me not lose sight of my daughter in the shadow of her limitations...

I know that you care for my child and that you work hard with her.

I need your expertise to help her become all that she is capable of being.

You need my help in understanding who she really is and in following through at home with things that are important.

Remember, though, that you send her home at night and have weekends off and paid vacations.

Let me have the luxury of having a vacation, sometimes physically,

sometimes just emotionally, for a day, a week, a month, without your judging me.

I will be there for her when you are long gone.

I love my child with an intensity that you can only imagine.

If on a given day I am tired or cross with her, listen to me, lighten my burden, but do not judge me.

Celebrate with me, rejoice in who she is and who she will become...

but forgive me if from time to time I shed a tear for who she might have been.

Why The World Needs Special Needs Children

How many times have you heard an expectant mom say, “I don’t care if it is a boy or a girl, as long as the baby is healthy?” But what happens when the baby isn’t healthy? How does one’s world change when a child is diagnosed with major health issues, either before or soon after birth? Is it worth having a child diagnosed with severe special needs in utero if he won’t live long or will have a poor quality of life?

For the contributors to A Special Mother is Born, edited by Leticia Velasquez, the answer to that last question is a resounding “yes.” As a result of her daughter Christina being born with Down Syndrome, Velasquez has become a pro-life crusader, determined to change the statistic that 90 % of children with Down Syndrome are killed via abortion. The parents who share their stories in this book want to educate others about the value and joy of special needs children.

In his inaugural address, Pope Benedict XVI stated that “Each of us is the result of a thought of God. Each of us is willed, each of us is loved, each of us is necessary.” The children profiled in A Special Mother is Born have Down Syndrome, Trisomy 18, autism, brain abnormalities, epilepsy, deafness, blindness, and other challenges. Yet, they have touched the lives of their families and the world around them immeasurably. Some of the children died at very young ages – their parents speak of them as saints in heaven. These are children who never sinned. They are with God interceding for their family members. As Colleen McGuire writes of her daughter Rita who died of Trisomy 18 soon after birth, “I don’t regret one moment of her life. My daughter lived a novena: nine days of love.”

These parents acknowledge the suffering and difficulties involved in raising a special needs child. No parent ever wants to see their child suffer or struggle through life. Yet, the experience has brought them to greater trust in God. Diane Grover writes, “We realized we must surrender it all to God; we must humbly hand it all over to Him. He created this child for His purpose. He created this child for His plans. Whatever comes will happen in His time and in His way.”

Lisa Barker has learned to endure great suffering watching her daughter die. “I’d like to write that everything is going to be okay. It will be, but there is suffering to embrace that I cannot run from. Without Jesus’ life, example and presence, it is impossible to do. But with Him, it can be done, and there can be a sense of peace and joy even in the midst of sorrow.”

Most often, it is fear of the unknown that causes women to abort their special-needs children. Eileen Haupt states, “If only a mother expecting a special needs child could know who her child really is. If only she could feel the joy and the love that she will feel for her baby if she welcomes her into the world. If only she knew how many hearts would be changed by her special baby’s presence. If only she knew, she would never abort.”

There is currently a war going on against special needs children. While those with Down Syndrome have been the primary targets to date due to pre-natal testing, it is only a matter of time before other abnormalities are also targeted. While there are certainly exceptions, the majority of doctors are far too quick to suggest abortion when something is wrong with the baby. They fail to see the blessings and lessons that these children can bring to the world. They fail to acknowledge the inherent worth of every person created by God. We must fight for life for those who cannot speak for themselves.

Grab a box of tissues and read A Special Mother is Born. Whether you are the parent of a special needs child or not, these stories will open your eyes and your heart and help you to appreciate the value of every child God sends to this world.

11 Things I Have Learned Since Becoming A Special Needs Parent

1. Not knowing is a lot harder than knowing. Yes, there is a lot we can do via therapy to help our children walk, talk, learn, etc. But the hardest thing to admit is that most of it is simply up to their brain and its wiring. There are no certain predictors that a special needs child will develop speech, be able to read, be potty-trained, or become self-sufficient . Good signs, yes. But nothing is certain. The not knowing can drive you crazy if you let it.

2. The internet is a blessing and a curse. On one hand, there is valuable information out there. Yet, information overload can get you stuck. You end up reading too many awful things — that often don’t apply to your child at all — and it can deplete your hope and make you paranoid.

3. Connecting to the special-needs community (whether it be acquaintances, support groups, or the internet) can be both a lifesaver and bummer. It is vital to find people who know what you are going through. Yet, sometimes it can produce even more negative feelings. Since there is always someone who has it worse than you, it can make you feel guilty for complaining. And, since there is always someone else who has it much better, you can sometimes forget that, when it comes to parenting, stress and worry are relative. Those people are just as immersed in their concern over their children as you are and, understandably, aren’t grateful simply because it could be worse. It can always be worse.

4. Holidays and special events magnify the situation. Birthday parties are no longer joyful events. Your special needs child is in an unfamiliar setting, one with all kinds of new dangers. You actually have to observe typical children alongside your child, so his delays and social difficulties are painfully obvious. People naturally want to know what to buy your child. And you might not know. He might not play with toys. And you will have to endure the present opening and cake cutting that your child is tuning out in front of everyone present. No matter what is said and done, there is an air of sadness. Ditto for Christmas.

5. Well-intentioned people will silence you and add to your frustration. They don’t mean to, but it is human nature to comfort and soothe. Invariably, they will attempt to do so in awful ways. Some will deny there is a problem and say that everything will be just fine. By denying there is even a problem, they effectively silence you and leave you isolated in your own mind. Some will try to remind you how grateful you should feel. And, while gratitude is a great thing, being reminded that you aren’t just makes you feel worse.

6. Picking your battles will take on a whole new meaning. A lot of folks will look at you like you are crazy for “giving in” to a 24/7 diet consisting of nothing but chicken nuggets and crackers. Even more will judge you for “giving in” to what they view as tantrums and being spoiled. You, however, know that therapy, joint attention activities, and getting to school are the real nonnegotiables.

7. People will surprise you. Causal acquaintances will step up to be better friends than the friends you most believed you could count on. There is nothing like becoming a special needs parent to give one clarity.

8. Doctors and other experts really don’t know everything. Your pediatrician and other persons doing behavioral screening may not see what you are so worried about and may try to convince you nothing is wrong. They may encourage you to wait and see. You will want to believe them and may forget that childhood development really isn’t their speciality.

9. If you aren’t a naturally assertive person, you will have to become one. People ranging from loved ones to Early Steps to the school system will give you a lot of reasons why they can’t meet your child’s needs. Even if it goes against your nature, you will have to fight for him. You will have to insist — which is both harder and easier than you might expect.

10. It’s easy to neglect others when you are caught up with the needs of one child. You can forget the importance of date night with your spouse. You might forget a friend or loved one’s birthday. You might realize that your typically developing children aren’t getting enough attention from you. And you might realize you are not taking care of yourself and are about to fall apart. You will have to figure out a way to stay both connected and together. This is hardest thing to learn and do of all.

11. You will develop an appreciation for the little things. There are moments of interaction and progress that will steal your breath. Hugs and kisses are unbelievably precious. And you will understand why this little soul was given to you. It’s because you are a perfect match for one another. And that is what sustains you through everything else.

What they didnt tell me about my childs disabilities....

Here are some things you will not find in your research:
You will not learn how this diagnosis will affect your marriage or other members of your family. You will not be told how it may fundamentally alter your perceptions of what is "normal," how it may change your view of human beings, how it can force you to question small talk and why we behave the way we do, how it will transform your outlook on life, how it will change you, how your life and everything you assumed to be true, is no longer what you thought.

Having a child with disabilities may cause you to feel things you never dreamed possible. You may know moments of joy and moments of despair you could not have imagined. You may find yourself going to untold lengths in the hope of helping your child. You may feel distracted, unable to concentrate. Your work and career may suffer. You may learn what it is to be sleep deprived. You will come to know what it means to feel desperation. You will know sorrow in a way no one can prepare you for. You will know happiness in a way no one can prepare you for. Sometimes you may feel both sorrow and happiness within the same day, within the same hour, within the same minute.

You may spend money you do not have on yet another treatment, yet another doctor, yet another specialist, yet another therapy, yet another intervention, all the while rationalizing that if it helps, it will all be worth it. You may contemplate doing things you would have scoffed at before your child was diagnosed. You may find yourself trying things that defy logic and have no medical basis. You may listen to implausible, anecdotal stories and think -- we will try that next. You may dream your child is speaking to you in full, complex, beautifully self aware and revealing sentences. You may wake from those dreams believing for a few seconds they were real and not a dream. You will pray that you might dream again. You will welcome sleep, as you never believed possible. You may ache with sadness because your child is crying and in pain and your presence brings them no solace. That ache may become unbearable when your child hits themselves in the face, bites their own arm or hand, punches their own legs or stomach. You may question every maternal instinct you have.

You may feel ecstasy from being hugged, unprompted. You may feel the exquisite joy from having your child reach for you, ask for you or look at you. You may know the joy that comes from seeing your child work so hard at something that does not come easily to them. You may celebrate when they use the bathroom unaided, drink from a cup, sleep for more than a few hours without waking you, try a new food or simply acknowledge your presence. You may feel a gratitude you would not have believed possible. You may cry from happiness when they say a word, any word, even if you are the only person who can understand what the word is. You will know what it is to appreciate commonplace things -- eye contact, the correct use of the word "me," "you" and "I," physical contact initiated by your child, a word, any word spoken or a smile.

You will feel a fierce love for your child that seems to come from a place that is not of this world. You will know what it is to love unconditionally and you will understand what that really means

Potential

On December 26th, Lilly will have been hospital-free for a full year. There are still quite a few dr.'s appointments that loiter, stalk, linger on our calendars each and every week. And some that always will.  But things are manageable now. We have a routine. And strangely enough, I enjoy it. 

We are looking forward to spending Christmas in our our home this year. For so long, it has seemed that our 'real life' has been on hold.  Quite frankly, we have been robbed of so many occasions, traditions, and milestones. Until now. We are ready to create our own traditions. Enjoy being just a regular family. I can't wait to leave the medical jargon, prescription refills, and therapy appointments behind, for just a few days.  I simply cannot wait to see her face when we light the tree and start to tear into all of those gifts. She is going to love it! 

Being so close to the action, it is difficult to see all that Lilly has accomplished this year. Too often, I forget to acknowledge just how far she has come. How incredibly hard she works. At everything. When we left the hospital, she was 10mos. She did not sit up, was still drinking from a bottle. Had little or no gross or fine motor skills. The looks in most of her doctor's eyes were not hopeful for her future. They were uncertain she had much potential and did not encourage us to expect  her to do much more than what she was already doing. 

At 21 months, she is now 19.5lbs and stands over 30". She has waving now, both into mirrors at herself, and in response to us waving at her. She sits up on her own. Beautifully, I might add.  She bears weight, stands and walks assisted.  She can take shapes out of a shape sorter, and puzzles. She turns pages in books to see the next picture. She drinks from an open cup and wears size 12 month clothes. She even sits facing forward in her carseat. Which she thinks is absolutely hilarious. 

Recently, we have purchased a gait trainer for her. Otherwise known as a (medical) walker. She has only been using it for about 2 weeks and is already getting into trouble. It is the first time I have ever found myself telling her 'no'. Funny thought for mother's of typically developing children, I'm sure. The first time she went for a light socket, I wept. It was just a tiny, tiny glimpse at a very, very typical experience. But I wept. Silently. Alone, in my kitchen. For one minute, I was just like every other mother of a toddler. And for just one minute she was a typical 21 month old, doing something she wasn't supposed to. It was life altering. 

Over the weekend, for the first time ever, she walked with intent toward a toy we held out for her. We scared the daylights out of her with our cheering and hooray's. It was another moment, another glimpse at her potential.