can use some advise?

Amanda - posted on 07/21/2010

My son is 5 and when he was 2 1/2 my doctor kept telling me he was just a little delayed (he could not walk or speak more the 5 words not clearly either). My husband and I took matters into our own hands call our state agency to get him look at - they were completely shocked that a doctor would have put off for some long getting him seen or look at by a specialist. Now he is doing much better, and without taking him to get him a diagnose so I could get him the help he needs he might not be my sweet talkative (now I can't keep him quiet - would not change it for anything though) little man. My husband also did not want the label - so it must be a man thing - and he still struggle with the fact that our children have these disabilities, but him wanting to know what cause it far out weighted him not wanting both of our younger children to be labeled. The best advice I can give you is to talk to him and tell him that just you and him can go get the testing done. No one has to know what you guys are doing, and that the only time you would need to tell anyone was if the test came back positive. My children were diagnosed with CP(celebral palsy) - which I found it a broad diagnoses for children who have problem with motor function due to the brain. On one hand I have a diagnoses, but on the other hand I still really do not know what it affecting my children. The worst of it is I may never truly know, and you can tell him my story if you need to - but from me you can tell him that it took me two years to get that diagnoses, and then why it did shed some light - I don't know the specifics! Let him know from one parent to another it is good to know, because then you can start helping your child.

Amber - posted on 07/02/2010

My 3 year old son has autism. Your husband sounds alot like my ex husband. I fought with him for 5 months to get my son tested (after his pediatrician suggested it) I finally made the appt and brang him by myself. He has been in services now for 8 months and is a completely different child. He talks to me, he smiles, he knows simple addition and subtraction, they were able to figure out he had fluid in his ears and he is getting tubes put in to drain it. Having the label opened up alot of possibilities for my son, it always ended my marriage, but I wouldn't change what I did for a second!

Terry - posted on 06/17/2010

My hubby sounded just like yours. I was the proactive one, I was the one fighting for answers.
What makes a difference, is when you sit down and agree that NO MATTER WHAT "LABEL" the world wants to put on your child, use the labels to get the services that they need to be the best that they can be.
Ultimately our goals are for our children to have as full and as happy a life as possible. This is every parents dream!
You are going to find that there are parents and Grandparents out there that you would love to string up by their thumbs!, because ignorance breeds ignorance! My son went through hell at the hands of neighborhood bullies, that were, my age and older.....then followed by their children who had learned well, the prejudices of their elders.
Don't allow this to make you angry and bitter ( I did, and trust me, that is energy wasted, that could be spent helping your child learn to be the best that they can be)
I don't know what state you are from..but many states have what is called Medicaid Waivers, that provide for your child to get all the therapies they need etc.
One of the most important things I received when my son was young was respite care!
I'd have lost my mind from grief and anger and fear had it NOT been for those times when I was able to get away and work on me, and research ways to help my son and my marriage.
Remind your husband, that without a "label" of what needs "fixing", you will NOT be able to help your child. Yes it breaks your heart!, but not near as much as knowing that there "IS" help out there and you chose not to get it. You and your family are in our prayers.
My son, it's been a rollar coaster ride, that I never thought I'd see the end of. No we didn't get the "savant" who can do some amazing thing. We didn't get the "Autistic Child who was mainstreamed and able to graduate with his peers, & got a scholarship to a great colledge" Most people do NOT.
What we got, was the person that GOD created our son to be.
A loving, caring, compassionate (in his own special way), giving person, who loves children and loves working with them and showing them how to draw and play games etc. He has always been just a sideliner who watched everything and screamed when you tried to make him participate. Now, he participates on his own terms and he is doing well! It's been the toughest Nineteen Years of my life, It has also been the most beautiful, tender, character building, life lessons, with perks, that you NEVER imagined life could hand you. Another piece of advice...make sure, that you start planning her future, should anything happen to you. (all parents must do that anyway) It is important that the needs of your child and your wishes are on paper, so that you can rest easy. My son makes me smile everyday, I learned to be picky possitive and write down everything that he accomplished and that he enjoyed. His reactions etc. My son, very much radiates the warmth of LOVE. the warmth of the SUN, the HOPE of a better tomorrow through CHRIST who has made him the young man-child that will touch many lives for many years (I hope) to come. We have been so blessed! You are blessed!!