Feedback on Family conferences

[Guest guest]

Hello, My child is 6 and has cerebal palsey and we are new to this work. My

daughter has great difficulties with speech and oral motor. She is walking, but

her balance is very shaky. We are considering attending a family conference this

summer. It's expensive and we're trying to make an informed decision. If anyone

would like to share their experiences, that would be so helpful. Thanks, Tara

in NJ

[Guest guest]

Hi Tara:We felt the same way when we started last August.  Tyler will be 8 in May and we've been to 2 family conferences.  We were scared on the first day but for me, I started seeing very slight changes by Day 3.  Tyler is severely disabled with spastic quad CP - he cannot walk, talk or hold his head up..  Since his second camp in January - Tyler is more cognitive, has better head control and much better use of his hands. He is also less fearful of crowds and sudden noises.   He has a LONG way to go and I as a parent have a lot of work to do with him.  That's one of the reasons we elected to try this -- because after family conference, we can work on him at home AND we also have a core specialist working with him. 

 

I will say that there is a LOT to learn but after my 2nd camp, I am slowly becoming more confident in helping my child be the most that he can be.

 

I hope this helps

 

Tammy

 

 Tue, Feb 15, 2011 at 7:09 AM, Tara <tvromanowich@...> wrote:

 

Hello, My child is 6 and has cerebal palsey and we are new to this work. My daughter has great difficulties with speech and oral motor. She is walking, but her balance is very shaky. We are considering attending a family conference this summer. It's expensive and we're trying to make an informed decision. If anyone would like to share their experiences, that would be so helpful. Thanks, Tara in NJ

[Guest guest]

Hi Tara!My name is Carole and we have a daughter that is 4 and is affected by severe cerebral palsy. Her CP was brought on as a result of a malformation of the cerebellum and an abnormally small brain. Her brain has also not been growing normally since birth (microcephaly). She depends on us for all daily activities (feeding, dressing, sleeping, etc.) and definitely has limited mobility (cannot sit, roll over or stand on her own). Having said all of this, she is a very happy little girl (as long as she has had a good night of sleep ) and is very determined to interact with the world around her.I was introduced to the Masgutova method about 1 1/2 year ago. I attended a few courses as I really wanted to understand the rational behind the

method. I had found that most "techniques" just talked about getting results without really explaining why. I'm an accountant and needed facts - lol. I found that the Masgutova method made a lot of sense and that it would be worth spending some time on this. So, after attending a couple of the courses, I decided to register Emilie to a family conference held in Kelowna, BC, Canada last summer. We registered for the full 10 days, which was exhausting, but so worth it. I found it gave us a great foundation to build from. It gave us specific exercises and techniques that were specific to her needs. Even though I was really apprehensive and worried that Emilie would have a hard time going through 6-7 hours of therapy a day, I was shocked at how well she handled the whole thing - better than her parents I think .I have to admit that although we saw some immediate results (like better ability to

swallow which improved her ability to eat and drink tremendously), it's only after 3-4 months that we really started to see some significant improvements. The Institute will tell you that it is typical, but I also think we only started seeing result when we started to consistently apply some of the techniques. You will be overwhelmed by everything they suggest you do after the conference - I was... so my husband and I sat down and picked a few key objectives that we wanted to work on this year - sitting and rolling - and decided on the key exercises that we wanted to repeat consistently. This has worked for us as we have definitely seen an improvement in posture (she has low tone core muscles) and she can now sit independently for short periods of time. We have also noticed a change in her feet; they are more flat and relaxed

allowing her to stand on them. There are a few other key improvements, but those are the major ones we are proud of.I do attribute these improvements to the Masgutova method, if applied consistently. We do these exercises everyday with her. We have been blessed with finding a nanny with physical therapy background so her main focus is to complete Emilie's stretches and exercises everyday of the week. And this is when we started noticing significant improvements.So, yes the conference is expansive, but I would say worth it. It will give you a tremendous amount of new techniques to add to your tool set. You can then decide for yourself what is most appropriate for your child. We are definitely glad we participated.Sorry, I rambled a little, but really wanted you to hear the whole story as I know I needed to hear those facts when I was trying

to decide whether to attend the conference or not last year.Good luck with your decision and the camp if you decide to participate.CaroleFrom: Tara <tvromanowich@...> Sent: Tue, February 15, 2011 7:09:43 AMSubject: Feedback on Family conferences

Hello, My child is 6 and has cerebal palsey and we are new to this work. My daughter has great difficulties with speech and oral motor. She is walking, but her balance is very shaky. We are considering attending a family conference this summer. It's expensive and we're trying to make an informed decision. If anyone would like to share their experiences, that would be so helpful. Thanks, Tara in NJ

[Guest guest]

Very loving, caring therapists. Intensive therapy of 6 hours per day really help make great changes in children. We did not want to come home.

From: Tara <tvromanowich@...> Sent: Tue, February 15, 2011 10:09:43 AMSubject: Feedback on Family conferences

Hello, My child is 6 and has cerebal palsey and we are new to this work. My daughter has great difficulties with speech and oral motor. She is walking, but her balance is very shaky. We are considering attending a family conference this summer. It's expensive and we're trying to make an informed decision. If anyone would like to share their experiences, that would be so helpful. Thanks, Tara in NJ

[Guest guest]

Hi Carole,I have tears of joy for all of you. We met all of you in Kelowna and were very fortunate to have spent some personal time with you at your home. says she misses Emilie. I can't wait to tell her the news about her progress. Good for you for not giving up on MNRI and persevering. This gives me more motivation to get back into it.We saw a lot of progress with Spencer while in Kelowna. However, it has been very difficult to continue the exercises on a daily basis with having two special needs children. After hearing about Emilie, I will have to prioritize my life better to allow myself the time and energy to continue with the program. Thanks for sharing the story. McGillivrayFrom: Carole Daigle <cdaigle_14@...> Sent: Tue, February 15, 2011 12:49:44 PMSubject: Re: Feedback on Family conferences

Hi Tara!My name is Carole and we have a daughter that is 4 and is affected by severe cerebral palsy. Her CP was brought on as a result of a malformation of the cerebellum and an abnormally small brain. Her brain has also not been growing normally since birth (microcephaly). She depends on us for all daily activities (feeding, dressing, sleeping, etc.) and definitely has limited mobility (cannot sit, roll over or stand on her own). Having said all of this, she is a very happy little girl (as long as she has had a good night of sleep ) and is very determined to interact with the world around her.I was introduced to the Masgutova method about 1 1/2 year ago. I attended a few courses as I really wanted to understand the rational behind the

method. I had found that most "techniques" just talked about getting results without really explaining why. I'm an accountant and needed facts - lol. I found that the Masgutova method made a lot of sense and that it would be worth spending some time on this. So, after attending a couple of the courses, I decided to register Emilie to a family conference held in Kelowna, BC, Canada last summer. We registered for the full 10 days, which was exhausting, but so worth it. I found it gave us a great foundation to build from. It gave us specific exercises and techniques that were specific to her needs. Even though I was really apprehensive and worried that Emilie would have a hard time going through 6-7 hours of therapy a day, I was shocked at how well she handled the whole thing - better than her parents I think .I have to admit that although we saw some immediate results (like better ability to

swallow which improved her ability to eat and drink tremendously), it's only after 3-4 months that we really started to see some significant improvements. The Institute will tell you that it is typical, but I also think we only started seeing result when we started to consistently apply some of the techniques. You will be overwhelmed by everything they suggest you do after the conference - I was... so my husband and I sat down and picked a few key objectives that we wanted to work on this year - sitting and rolling - and decided on the key exercises that we wanted to repeat consistently. This has worked for us as we have definitely seen an improvement in posture (she has low tone core muscles) and she can now sit independently for short periods of time. We have also noticed a change in her feet; they are more flat and relaxed

allowing her to stand on them. There are a few other key improvements, but those are the major ones we are proud of.I do attribute these improvements to the Masgutova method, if applied consistently. We do these exercises everyday with her. We have been blessed with finding a nanny with physical therapy background so her main focus is to complete Emilie's stretches and exercises everyday of the week. And this is when we started noticing significant improvements.So, yes the conference is expansive, but I would say worth it. It will give you a tremendous amount of new techniques to add to your tool set. You can then decide for yourself what is most appropriate for your child. We are definitely glad we participated.Sorry, I rambled a little, but really wanted you to hear the whole story as I know I needed to hear those facts when I was trying

to decide whether to attend the conference or not last year.Good luck with your decision and the camp if you decide to participate.CaroleFrom: Tara <tvromanowich@...> Sent: Tue, February 15, 2011 7:09:43 AMSubject: Feedback on Family conferences

Hello, My child is 6 and has cerebal palsey and we are new to this work. My daughter has great difficulties with speech and oral motor. She is walking, but her balance is very shaky. We are considering attending a family conference this summer. It's expensive and we're trying to make an informed decision. If anyone would like to share their experiences, that would be so helpful. Thanks, Tara in NJ