Saturday, January 7, 2012

Lessening The Burden

The past couple weeks have been a long needed respite from all of the pressure associated with Noah's condition. 
For one thing, Noah seems to be doing well and is moving along in his development at a rate that i wont argue with. He may not be burning up the developmental trail, but he is getting to be "average" or at least close. and that is good enough for me! Now i understand that just because he can do what an average 3 month old can do doesnt mean when he is 12 months he will be able to proclaim the same...but I am taking it one day at a time...and we have had a few good ones lately. 
But that isn't really the focus of this post. After Noah's diagnosis we were referred to some programs that help children with disabilities and their families cope with the added stresses. We applied for SSI (social security insurance) Medicaid, CSHCS (child special health care services) and Early On. Some of these applications were tedious and very stressful in their own, but i am glad we were given these tips because in the coming months and years the help we will get from them will be invaluable. 
Early On is an in home physical therapy program funded through the schools here in Michigan. We were directed to them before Noah was even out of the hospital and got started as soon as possible. This program has proven so valuable to me that i cant even explain it. A physical therapist comes once ever week, every other week, month, whatever you choose and evaluates your child's development and shows the parents exercises and other methods to help the child develop properly. Or at least to help them remain comfortable. 
We have been seeing our physical therapist every other week so far and it is unbelievable how much help it has been. She gives us areas to work on and ways to do so and we spend the next two weeks working on those areas. So far Noah has been responding well to these methods and putting a lot of our developmental concerns to rest. Things that i would have otherwise overlooked as "nothing" are given the attention they need to be sorted out before they become a real problem. If you are the parent of a child with special needs and if you have a program like this in your area, i would HIGHLY recommend getting your child involved. best of all, it is FREE!
SSI / Medicaid- SSI is a cash payment to those born with disabilities or somehow disabled otherwise. We applied for this mostly because it would instantly qualify Noah for SSI recipients medicaid. Which we did not qualify for otherwise. He receives a monthly benefit in the form of a check ($14) which isnt much of anything, but as i said, i didn't apply to get money but to get Noah insurance. Having this insurance means that Noah's inevitable medical expenses will be covered and now his Mom can stay home with him more days because she doesn't need to work full time to maintain his medical coverage. Meaning someone will be home with him to give him the attention he needs to have the best chance at a normal life.  I will admit that before I had Noah i was apprehensive about these sorts of programs. Not that i was against them, but always thinking i would never need them and i could make it without them even if i qualified...but you know what? the second Noah was born and i knew things just weren't right...all of that misguided "pride" or whatever you want to call it disappeared. It was replaced with an urge to make sure that Noah got every chance he could get at a normal life. And if programs like these give him that shot, then that is what i will do. 
CSHCS (child special health care services) is a supplemental insurance provided to children born with disabilities. The family pays a yearly fee based on their income and family size and are covered for an entire year. This fee can be waived if the child also qualifies for Medicaid. What CSHCS does is cover medical costs incurred due to that child's specific condition. In Noah's case this would be therapy sessions, braces (if needed) and so on. Obviously this would vary by condition. Noah qualified for this program and due to his SSI qualification (and by extension Medicaid) we didn't have to pay the yearly fee which is a huge load off our minds and bank accounts. 

I never thought i would be wishing that my son qualifies for Medical assistance...I would much rather he had been born with no problems and i never needed to even know about all of these programs. But i sure am glad they exist for those who need them...I don't know what we would be doing if they didn't right now. Now my attention can be focused where it truly belongs, on Noah. Not on how we are going to pay his next medical bill. 

If you are the parent of a child with special needs and need information on these or any other programs for families in need. Contact your local DHS (department of Human Services) for more information. They will be helpful in guiding you to the programs and people you need to contact. 


  1. My heart goes out to you as a parent of an adult child who began life with severe developmental delays and as a special educator who is part of educational teams who helps students who have profound mental challenges. Your blog is well written and needed. You must never forget that you and your wife are Noah's best advocate.There will be times where you will have to firmly stand your ground and make sure Noah gets the support he needs and is guaranteed by law to get. Keep researching everything that has to do with his challenges as you have to be the experts on Noah. No one else has as much of a vested interest in him as you do. Financial help and respite care are harder to find which is why you need to keep researching grants for both. Also look for support groups that can and will help you. Best of days to you and your family. Noah is a cute little fellow. It is amazing how well our children do with a good support system at home.

  2. Glad to her that these things are taken care of and you don't need to worry about money for these things. thanks of the update.

  3. I have a child with special needs nothing like what you are going through right now though. Both my kids are ADHD and besides the ADHD my son is autistic.

  4. It's wonderful that these programs are in place when they are needed.


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