#1 Why do you travel out of town for medical care when you live in a major medical center?
We are fortunate to live in an area where there are awesome doctors available to treat a variety of medical conditions. Unfortunately, the doctors here do not have the wealth of experience with Jack's rare craniofacial syndrome (Apert syndrome) as our team in Dallas. Jack has already had a rather complicated course so we've decided to stick with the hospitals and doctors that are most familiar with his syndrome.
#2 Why do you homeschool when your local education agency has such a fantastic reputation, especially with special needs?
Our local education agency is wonderful. They have some very dedicated people working in the system. However, Jack is a "square peg". He does not learn well in a "traditional" school environment. By homeschooling, we are able to meet Jack right where he is and meet his very individual needs from moment to moment.
#3 Even though he's not in school, he does get services through the LEA, doesn't he?
No, speech therapy is the only therapy available for homeschoolers in our area but it is not available in a way that is helpful for Jack.
Because he is legally blind, we do have supplies from our local school for the blind.
#4 Do you receive some type of government assistance?
No. The government assistance that Jack's diagnosis and needs would qualify us for are income based. We have been blessed in our careers and do not meet those income guidelines. Dave or I would have to quit working altogether and then the other of us would have to take a lower paying job. Don't get me wrong, we're not rolling in dough, we are just solidly middle class and not eligible for government programs.
#5 Why don't you make adjustments in your working life? Wouldn't you rather stay home with Jack?
Of course I would. However, Dave is able to work exclusively from home and I have a flexible job. My job does require me to be gone from home a bit but I am also able to do some of my work outside of normal business hours enabling me to spend lots of time with Jack (and David) while still working full-time. We are very fortunate in our current arrangements.
#6 Does your insurance cover all of your medical expenses?
Don't we all wish it worked that way? Jack's craniofacial team is "out of network". They are not "in network" with anyone. We are still heavily in debt for Jack's medical care thus far. However, we believe in our team and their great care for Jack (see #1).
#7 How will "Obamacare" affect you?
Neither Dave nor I have read the hundreds of pages of the act and are very aware that politicians have a hard time giving an unbiased representation of what is in the act. We vote as we feel lead (or not) and we will see what becomes of all the hype from both sides of the aisle.
#8 Are you going to have any more children?
Well, that's really up to God who can get around any plans we make but I'd rather not. I am very happy being Jack's mom. Many mothers of multiple children have told me that this is an unsubstantiated fear that they had but I'm just really not sure I could love another child this much! AND I'm 40 years old. Throughout my pregnancy with Jack, I felt that it was an experience that a woman should have when younger and now I'm 7 years older.
#9 Are you sad that your only child is not a typical child?
No. God has granted me the desire of my heart by giving me Jack. Many of my experiences right up to Jack's birth lead me to being Jack's mom. Jeremiah 29:11 (I know the plans I have for you, says the Lord, plans for good, not for evil, to give you a future and a hope) has been a favorite verse of mine since childhood. Since Jack's birth and all that we have been through, I can clearly see how God was at work in my life long ago to lead me here. It amazes me how God wove this plan together and I'm excited to see what he has in store for our future!
#10 Will Jack grow to be independent?
That's what we're working toward. He's only seven now so we've got lots of time.
#11 How can I help?
Prayers and encouraging words have supported us throughout this journey we're on.
If you live in our area and have run into us or feel that you might run into us, please don't be afraid of our "differentness" or asking questions or allowing your children to ask questions. I've posted some links over in the left sidebar with how to talk to children about Apert syndrome. If you have time to read it and prepare yourself and your children for meeting us, that would be awesome.
Financial donations can be made in Jack's name (Jack Smith) to Apert International, Inc (P O Box 2571, Columbia, SC 29202). All donations are tax deductible and Apert International will send 100% of the donation to us. You can visit them online at http://www.apert-international.org/.
Have other questions? Ask away!
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