My dear son was born at home 3 months ago...breech. And suffered Extreme Hypoxia. He was rushed to a NICU and was immediately placed on the cold blanket for 72 hours.
After 39 days in NICU, we came home. He has a feeding tube and takes very little from a bottle. He is so far ahead of what Hospital #1 told us he would do...but still far from his potential. He eats (thru a tube), sleeps and poops.
But he does not interact wtih us at all. He will not put out his thumbs...and has various other muscle concerns.
We have sought both Traditional and Alternative help. And feel like we're running from pillar to post. Every Dr and therapist gives us a set of exercises and whatnot to do with him...but none are coherant. In fact, one therapist's directions, directly contradict what another told us.
The Famiy Hope Center in PA came before me two days ago. Right now, the $1K for the seminar and $3500 for the eval would be a stretch...but it IS doable. My husband is pretty on-board. I thought my mother was...and today, it seems, she is dead-set against. I am at my whits end!
Yes...I realize we have all of the pieces HERE where I live (NC), but none of the pieces are working together. Our Cranial-Sacral therapist refers to it as "collective, but not collaborative". Does that make sense?
I would LOVE to find a team of Drs who are POSITIVE and are working TOGETHER for my son's betterment. Have I found it by finding The Family Hope Center?
That's so hard to come by no matter what your child's need or diagnosis is. We struggle with it here and we have a pretty good system set up for Autism in BC (Canada). I hope you can find what you seek!!
Weary SuperMama to my amazing neurodiverse 6 y.o. DD and to my on-the-go neurotypical 3 y.o. DS
We did a home neurodevelopmental (ND) program for the first 3 years, then for the last year have been with ICAN. Our cost is quite a bit cheaper. I think my original consult was about $650 or so & the follow up less than $500.
If you want to learn more before making a commitment, there are also a number of books you can read. This is how I got the information to do my own program.
Here is a link to another group that is very knowledgeable about ND programs.
This is a link to someone else's blogpost on how to find an ND which will give you some other organizations to check out if you are interested.
My parents were always supportive, but a little unsure at first. Now they can't stop bragging about how smart their grand daughter is!
If it will help convince your mom, show her my videos page. I have videos of my dd reading from age 2 until 4 years & swimming at age 4 too.
Good luck & congrats on your baby boy! Please feel free to ask any questions you may have:)
My blog - http://downsyndromeupupupandaway.blogspot.com
I could write for hours about Family Hope Center. First, I want to say their program absolutely changed my daughter's life.
Tiffany's story... I was her foster mom from age 5 months to 5 years, at which time I legally adopted her. She was always behind her typical peers, didn't hit milestones on time, profoundly socially/emotionally delayed and moderately cognitively delayed. She received special ed services from pre-K on. By 4th grade all her academics were in a special ed classroom and she was academically functioning at middle 1st grade. She had no ability to have friends and it was heartbreaking to watch her in social and school situations.
Middle 4th grade, I quit my job and we went to Family Hope Center. We came home with a program and got to work full time, no school, no work, just her and I 9 hours a day,5 days a week. 1 1/2 years later, she returned to public school and the school did the typical, 30 days in a regular ed setting and we'll observe... In the end she no longer qualified for special ed services AT ALL. She was still behind her peers but more like low average. When I came home from the school meeting and told her, she starting crying and said, "It worked Mom, it really worked!"
Fast forward 2 years. She is now in 7th grade. Last summer we did Family Hope Center program 4 hours a day/6 days a week for the summer. She's still not totally there but it's so much better. I'm hoping another 2 summers of FHC program and public school/afterschool activities during the school year will do it. Right now academically she is average. She gets As and Bs (even though her assessment scores like tests and quizes are usually Cs and Ds), she has an amazing work ethic, gets no special ed services, has two friends (both are socially ackward kids but so is Tiffany), and most importantly she and I have an amazing bond built on trust.
Before we did Family Hope Center program I did not expect Tiffany to be able to function as an adult without support and was beginning to look into supported residential and work options for her when the time came. Now I fully expect her to be able to go to college and be independent as an adult. She is not fully there yet, and thus we will still do FHC program in the summer, but she's getting there.
I know for most families doing an intensive home program is a huge disruption and financially draining. FHC is definitely worth it. I am a single mom (Tiffany is adopted) and also have a daughter in college. I cashed in my 401K, we moved to a one bedroom apartment and went on food stamps to be able to afford me not working and the cost of going to FHC. We would have kept going longer than the 1 1/2 years, but that's how long the money lasted. I would do it all again without hesitation and kick myself for not doing it sooner.
The folks at Family Hope Center really know what they are doing. Every time we went I got a really clear picture of where she was developmentally and left with very clear instructions on exactly what to do. Also, they are always adding new pieces to their program. When they find a therapy piece that works, they add it in or substitute it for another piece that isn't as effective. I don't know if they do this on purpose but, they knew we were time rich and money poor. Tiffany's program worked within those financial confines. I never felt, "Oh if I had more money, we could ..." except do the program full time for longer than the 1 1/2 years.
I hope this information helps!
I just want to add a couple things to my previous post. Family Hope Center can help children with all types and severities of injury or disability. I think my daughter's work was fairly simple compared to some of the families I've met there. Also, when I wrote about financial constraints and her program - there were several pieces of therapy that FHC said, put this or that in if you can (cranial sacral, facial release, hyperbaric chamber, organic foods, ect.) but what we needed to buy for her primary program was very limited.
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