Archive for Special Needs

Life with Special Needs: Q&A

To finish out my special needs series, I’ve got a couple questions that I’d like to answer.

How have you managed religious training/Sunday School with your daughter, especially if she can’t understand what’s going on, or is disruptive to the class?

We are fortunate in this way. We are members of a relatively small church, and every nursery worker knows our daughter, and what to expect from her. It also helps that her 4-year-old sister comes down to the nursery for the second half of the church service–if anybody needs help translating my daughter’s speech, they can ask her sister. I’m not really sure what the future will look like in this area.

Has having a special needs child been hard on your marriage?

Yes. There’s a reason that divorce rates are higher in families with special needs kids. It takes an extraordinary emotional toll on your marriage. I think some couples are able to weather the storm well, being drawn closer together; others are not. Quickly, I have two thoughts on this:

1. Go seek counselling from a pastor. They are there to help. They can help referee ongoing fights, and point out hidden areas of bitterness against your spouse that manifest in many different ways. Be ready to give answers to hard questions, and receive rebuke for your sin–it’s the only way forward.

2. As much as you think you want to run away from your spouse, leaving the past behind and making a fresh start, it never works that way. The two of you became one when you married, and there is no way to undo that. Between custody battles, alimony battles, and the emotional toll, divorce will only make a bad situation worse. It’s worse for you, it’s worse for the kids. It just is. Not only that, but you have now lost the one person who went through your suffering with you. Even when you think you can’t stand him, and things will never be ok, it’s worth it to put in the effort to reconcile. You’d be surprised the wounds that time can heal.

Wrapping up, I’d like to share an article my friend Michal sent to me, addressing how the disabled bring glory to God. It was encouraging to me, and helps to answer some of those ‘why’ questions.

Part 1 I Part 2 I Part 3 I Part 4

Posted in Marriage, Special Needs | 1 Comment

Life with Special Needs: Why?

BeatufiulHope3

Being told that your baby will not be normal is one of those scenarios in life where you begin to question everything you believe. A parent’s first thoughts are usually along the lines of, “Why me?” “Why my child?” “Why our family?” “What did I do to deserve this?”

These are tough questions, and I do not pretend to have answers. A lot of these questions and answers delve deep into theological truths involving the nature of sin, of our fallen world, of grace, redemption, and gospel.

When we first received our daughter’s diagnosis, I spent months thinking that someday I would know the answers—someday in heaven, I would ask God why He made our daughter the way she is. But one of the biggest lessons I have learned in the past three years is that I can see now why He gave her to us. While there is probably a bigger picture that I can’t see right now, I can see so many blessings that have come into our lives through having her that I honestly think the ‘real reason’ won’t matter to me when I finally come face to face with our Lord. She has changed my life, here and now, for the better, and I don’t wish to change any of that.

So what are the things I’m thankful for now?

*Her easy-going and sweet personality. As my 8-month-old son is starting to crawl, and generally wreaking havoc on the entire house, I’m realizing how easy-going my daughter is. She is a sweet, happy girl, always ready to climb in a chair and listen to a book. She responds quickly to “no,” and is loving and affectionate.

*I am no longer afraid of disabled people. I have always thought that having a disabled child would be something I could not handle, and have never been quite sure how to treat the disabled. Now I know: they’re normal people, too, wanting to interact in a normal way.

*I have a new understanding and compassion for parents dealing with birth defects or infant loss, along with a desire to help them. We did not lose our daughter, so I can’t relate exactly to women who have lost a baby, but I certainly understand now a lot more than I used to the pain that comes in this situation. And the fact that grieving is not a quick or easy process.

*The joy that I have watching my other children care for her. They are kind and gentle with her, eager to help, and quick to comfort her when she gets hurt. They also are learning how to love and care for the disabled.

The ‘why?’ question has changed for me. I can see why, here and now. And I am thankful.

Part 1 I Part 2 I Part 3 I Part 5

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Life with Special Needs: Schooling

Since my daughter is not quite three, I’m not yet in the know about schooling a child with special needs. I have many philosophies and ideas, but have yet to put those ideas into practice and observe results. No matter; I’ll tell you my ideas anyway!

Our local school district spends between $20,000 and $60,000 a year on each special needs child enrolled in the system. Programs for my daughter would start on her third birthday, but since I am not familiar with the extent of what is offered to her, I am not sure if a 3-year-old quite meets that $60,000 number. This number does include all sorts of therapies that would be provided at school: PT, OT, speech, etc. In order for our family to benefit from these services, my daughter would have to be enrolled in their Pre-K program, meeting at least three mornings a week.

As I told you last week, I quit doing all these therapies for my daughter about a year ago, so we have no incentive to enroll her in school to continue receiving the services. But beyond that, I feel certain that enrolling her in a Pre-K program would be detrimental for her (and, by extension, me). My little girl is nowhere close to being potty trained–she cannot dress herself, or even take her own shoes and socks off. While she can feed herself, it is a messy endeavor that involves a bib, sippy, and a special heavy-duty high chair that supports her. My daughter loathes change. Strangers make her nervous, and she relies on her siblings for emotional and physical support, even in the church nursery.

Why would I send her away, to be cared for by professionals? In a group setting, she would receive less individual attention than she does at home. And just by the very nature of the thing, her caretakers would not love her the way I do. The other children in her environment would not be looking out for her, or wanting to help her.

Since we are already homeschoolers, her schooling fits right in with the rest of our lives. She participates in all our group activities, even if that only means sitting on my lap while the other kids recite poetry or Bible verses. When my girls get out coloring books, they get out the old, battered one for their sister. She toddles over to get ‘her’ colored pencils, and sets up shop at the dining room table, coloring just like one of the big girls, never knowing that her scribbles look different than their pictures. And in this safe environment, she will never be mocked for falling over as she turns her head to look at something, or tripping as she carries a toy. She will never be teased for her funny speech, or the fact that her glasses have fallen off, again.

While I wish we had a yearly schooling budget that looked like that of our town, I will not trade all that money for the chance to school and nurture her at home, in an environment where she is loved.

Part 1  I  Part 2  I Part 4  I Part 5

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Life with Special Needs: Doctors

BeautifulHope2

Last week, I gave you a glimpse into our life with special needs. This week, I want to give you a peek into how we’ve managed our daughter’s health care needs. Before I can do that, though, I should give you just a little bit of the background to her story. At 25 weeks gestation, our daughter was diagnosed with an occipital encephalocele. The name of her birth defect is not really important, unless you yourself have been given the same diagnosis, and then you learn that there is very little information out there. So I mostly tell you the name of her birth defect for the benefit of some other mother who may google it someday, looking for answers.

This particular birth defect has a very high mortality rate–only 10% of the babies diagnosed with this condition in utero survive their first month of life. Of those that do survive, there is a huge range of outcomes, ranging from severe mental and physical handicaps to being completely normal. By God’s grace, our daughter is much closer to the ‘normal’ end of that scale, so far only showing developmental delays in gross and fine motor skills.

In the 3 months between our daughter’s diagnosis and her birth, my husband and I met with many specialists.  We quickly realized that we would have to fight for our daughter—we were told many times that ‘terminating’ my pregnancy was the safest, smartest course of action. When we firmly said no, the doctors would start recommending courses of treatment for palliative care—not to provide life-saving care, but instead to make her comfortable until she died. While I will be the first to admit that sometimes palliative care is the right decision, our medical care team would only have very brief conversations about what to do if our daughter was born relatively healthy.

So you can see why my husband and I developed a healthy skepticism for the medical profession in regards to our daughter. Here she was, of all of our children the most in need of wise, skilled doctors, and instead, those doctors were recommending that we take steps to end her life, or at the very least, let it slip quietly away. My husband and I got very good at judging doctors quickly. We could tell, within the first few sentences, whether he or she was really going to help us.

This is the background that informs our approach to our daughter’s health care today.

So what are the biggest lessons we’ve learned? First, we are her parents and know her better than any doctor ever will. We do not have medical degrees, but there is a lot of information available for whose willing to research, and no doctor will ever know the ins and outs of our daughter’s case as well as we do. With this in mind, we must not be afraid to ask questions, or even challenge something a doctor is saying. The responsibility for her care is ultimately in our hands. We make the final call on every decision.

When my daughter was 6 months old, we had a well-respected pediatric neurosurgeon tell us that she needed a shunt put in her brain to drain excess fluid, even though my husband and I did not see any of the symptoms that would have required this dangerous surgery. After several more visits with this same doctor, I finally started making phone calls and got an appointment to see the head of the pediatric neurosurgery department at Columbia University. This man was kind, humble and sympathetic, and gave our daughter a thorough examination. He agreed with our judgment of the situation: she did not need the surgery.

Second, when medical care is necessary, secure the best doctor. We no longer assume that her case is simple, and any doctor can care for her. If we know a friend of a friend who knows a good neurologist, we call and ask for help. We google doctors’ names and read reviews. If we are uncomfortable with anything about a doctor, we don’t hesitate to go find a different one. While this may not be true for everybody, we live in enough of a major metropolitan area that there are always other options out there. If we are unhappy with a doctor, it is worth a two hour drive to another city to get a different opinion.

Third, we have learned that just because a doctor tells us something will be good for our daughter does not mean it will be good for the rest of our family. I must view my daughter’s care in proportion to the needs of my other children. We had a period of 6 months where my daughter was seeing 4 different therapists a week. 4 days a week we had an hour of different therapy: PT, OT, Developmental Intervention, and Speech. This schedule was unsustainable for our family. I was being run ragged. We quit them all, and I have been much happier. And our daughter has not quit progressing; in fact, she continues to gain gross and fine motor skills and speech at about the same rate she was when the therapists were all coming.

We have never considered ourselves proponents of alternative health care. We vaccinate all of our children in accordance with the AAP’s recommendations. I quickly seek antibiotics for ear infections and strep throat. But in regards to our daughter’s current medical needs, we’ve learned that less is really more. We take every bit of advice with a grain of salt, and then research, research, research what approach or other solution might work for us. When a doctor gives a recommendation, we no longer obey blindly.

Our goal is to live a normal life with our daughter. Her siblings provide much therapy for her. They chase her around the couch, help her when she falls, repeat words slowly for her so she can imitate them, get pieces of paper for her to draw on, and hold her hand on the stairs. The care and love she receives in our unprofessional home environment are sufficient for us all right now.

Part 1 I Part 3 I Part 4 I Part 5

Posted in Special Needs | 7 Comments
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