I am so feeling defeated. Overwhelmed. Bummed out.
I don't know how other parents are able to do it. There are two therapies that I can totally see Daniel succeeding in. The Institute of Achievement for Human Potential and the ABR in Canada.
Let me explain what they are and how they help children like Daniel. Lets start with ABR. Advanced BioMechanical Rehabilitation. The closest location for us is in Canada.
ABR is a method that re-builds even the most severely distorted musculoskeletal structure.
It is just amazing what it can do. I feel like this is a must for Daniel. He MUST GO, at all costs.
It is a therapy that will be done at home. We would go and Daniel would be evaluated, looked over, examined and decided what is the best approach. I can not see that Daniel would get this with the typical standard therapies that we have been doing for 2 1/2 yrs.
I research things all the time for Daniel. I saw this a long time ago, and found people who have done it with their child. One of the moms belongs to a yahoo support group that I also belong to. Her son is very similar to Daniel, and he has made great progress. Again, I know ever child is different, some therapies work well for some and not great for others. But we can not NOT try this, what if this is the one thing that will work for Daniel? What if we were to say oh well, we can't afford that, and it was the thing that could have helped him to be a little more comfortable, a little more of who he is on the inside on the outside? I am not trying to cure Daniel, I know he will always have what he has. But I can make him more comfortable, make life a little easier for him. I can give him all that he should have been given, but has to fight for. He should be able to walk, move his hands, eat like everyone else. I have said all the way along, he is a very smart boy...he is just stuck in a body that isn't working for him. Damn it, I want to give him the opportunity to have his body work. We just need to get it stronger, teach his body who is boss! He COULD walk if his trunk was strong, he COULD. I know it. I see it everyday. He tries, the grunts, the determination, my tears.....he CAN do it with the right support. He knows what he is doing, he just needs his muscles to understand and be strong. It isn't fair. It just is not fair. It sucks knowing that there is something out there that can help your child, and we just aren't able to do it. The man that does the evaluation only comes to Canada twice a year October and April. I would give anything to be able to go in October. Waiting until April...that is 6 more months lost to Daniel. Allot of people think, its only 6 months. But if someone said to you, hey don't walk for 6 months, oh yeah and by the way, don't sit up either cause you can't, don't even try to get a drink by yourself cause you can't do that either. Oh and talking? Give it up. Your trunk is not going to handle it. For those of you who don't understand how much your trunk does for you. It holds you upright, it allows your arms to move freely, your hands to work, and if the muscles in the trunk are weak, you can't get the air moving in your lungs well enough to be able to create sounds to speak . 6 months. I dare you to try losing all that. And don't you DARE say well he doesn't know what he is missing because he never had it. BULL$HIT. He knows.
I don't know how other parents are able to do it. There are two therapies that I can totally see Daniel succeeding in. The Institute of Achievement for Human Potential and the ABR in Canada.
Let me explain what they are and how they help children like Daniel. Lets start with ABR. Advanced BioMechanical Rehabilitation. The closest location for us is in Canada.
ABR is a method that re-builds even the most severely distorted musculoskeletal structure.
It is just amazing what it can do. I feel like this is a must for Daniel. He MUST GO, at all costs.
It is a therapy that will be done at home. We would go and Daniel would be evaluated, looked over, examined and decided what is the best approach. I can not see that Daniel would get this with the typical standard therapies that we have been doing for 2 1/2 yrs.
I research things all the time for Daniel. I saw this a long time ago, and found people who have done it with their child. One of the moms belongs to a yahoo support group that I also belong to. Her son is very similar to Daniel, and he has made great progress. Again, I know ever child is different, some therapies work well for some and not great for others. But we can not NOT try this, what if this is the one thing that will work for Daniel? What if we were to say oh well, we can't afford that, and it was the thing that could have helped him to be a little more comfortable, a little more of who he is on the inside on the outside? I am not trying to cure Daniel, I know he will always have what he has. But I can make him more comfortable, make life a little easier for him. I can give him all that he should have been given, but has to fight for. He should be able to walk, move his hands, eat like everyone else. I have said all the way along, he is a very smart boy...he is just stuck in a body that isn't working for him. Damn it, I want to give him the opportunity to have his body work. We just need to get it stronger, teach his body who is boss! He COULD walk if his trunk was strong, he COULD. I know it. I see it everyday. He tries, the grunts, the determination, my tears.....he CAN do it with the right support. He knows what he is doing, he just needs his muscles to understand and be strong. It isn't fair. It just is not fair. It sucks knowing that there is something out there that can help your child, and we just aren't able to do it. The man that does the evaluation only comes to Canada twice a year October and April. I would give anything to be able to go in October. Waiting until April...that is 6 more months lost to Daniel. Allot of people think, its only 6 months. But if someone said to you, hey don't walk for 6 months, oh yeah and by the way, don't sit up either cause you can't, don't even try to get a drink by yourself cause you can't do that either. Oh and talking? Give it up. Your trunk is not going to handle it. For those of you who don't understand how much your trunk does for you. It holds you upright, it allows your arms to move freely, your hands to work, and if the muscles in the trunk are weak, you can't get the air moving in your lungs well enough to be able to create sounds to speak . 6 months. I dare you to try losing all that. And don't you DARE say well he doesn't know what he is missing because he never had it. BULL$HIT. He knows.
1 comment:
ABR and 'defeated' should not be in the same post!! I don't know how to say this (I'm not a native english speaker) but I think ABR is the best investment possible in the present.
I really hope you can take Daniel soon to Canada, I'm a mother of a 3yo CP girl, so I understand the urgency...
There is something I say to parents here with money issues: with ABR you can STOP spending money on botox, DAFOs, PT, OT, speech therapy... I dont know how it is where you live, but here this things are truly expensive. Tradiotional treatment is by far more expensive that ABR, but still parents dont see that they will actually SAVE money doing ABR.
So some parents skept (skip?) the next botox infiltration and a new pair of DAFOS and thats it, there is the money for starting ABR.
I dont know if this is any help, honestly I dont think so, but I really hope you can go to Montreal. We've only beeing doing ABR for 8 months, but have seen so much progress in our daughter and in everyone we know from ABR. It is completly worthy.
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