Child with Special Needs

I'm a parent to 5 special needs children. My birth child is now 22 years old. Her has spina bifida. We have 4 special needs adopted. Range in age 17 years old to 13 years.

Oh my gosh. I have very little knowledge about all those conditions. It is sad that one little baby has to endure soooo much! I am so sorry that your husband is distant. I can understand. Men, especially military men, seem to want that "tough little boy" that reflects who their father's are. This must be really hard on both of you.

I have absolutely no advice but I just wanted to let you know how special you must truly be. God sends those sweet spirits to the strong spirits down here on earth that he knows will love them and take good care of them. You are truly special and so is your little boy! Give him a huggers for me.

Hang in there!

Did you read my post recently???? It's named: Daddy can you fix it. Please, read it.. maybe, share it with your husband.

After reading it you'll know what I'm talking about:

I realize that it might be sad that your little guy may never be able to submit a "fix it" pile to your husband, but, he certainly is one of the most favorite things that you get to keep with you every day.

As in the poem... there may be some parts that are unfixable, and the difference can cause some fear, but you can learn to play with it another new way.

I really think that my poem could be a heart touching encouragement to you guys.

Read it and let me know what you think. And we can talk further.
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One final thought is that Mommasource will probably be a blessing to you. I'm glad you joined. There's a few slogans (that I think I thought up on my own....)that go as such: They help me keep things in perspective as I make new friends here at Mommasource.

1.) I'm just a typical mom, that receives a lot of typical advice, regarding a kid that just happens to not be typical. I take what I like from Mommasource and I leave the rest.

2.) And just being his typical Mom is a seat of honor and importance. If I'm trying to be his Doctor, therapist, teacher, etc. then who is taking over for me. He needs me to just be his Momma.

3.) He's a special boy indeed, but, he's not that "special" that he's exempt from becoming his best boy yet.

That's why receiving all of this typical advice and even some ignorant comments is welcomed with open arms. Because, that's all I'm supposed to be, just a regular Mom, with regular standards... maybe, that's just what he needs.

Parenting: this doesn't have to be an overwhelming task. God never gives us more than we can handle. He's not the author of chaos and confusion. He's a God of order. And the order is that inside us he's already given us all of the equipment we need to rise up, and complete the task at hand. He doesn't shove us off cliffs in the name of "faith" - although some surprises in life feel as if we've just been shoved off a cliff. He gives us all the equipment we need to climb down, parachute, and maybe even hang glide as we enjoy the view. The thing is that since our back pack is behind us... we can't always see the next tool that we reach back for. And surprise! It's Mommasource.

Welcome A..

Hi A. and welcome !

It sounds like you've definately got your hands full with your son and going to school and all. But, sounds like your doing it and have life plans to follow through on. Kudos to you and all you've done for yourself and your son.

I hope this group can help you connect with like minded people and possibly make some new friends. Are you not in Washington state? And are you not with the father of your son, as in married? What are you doing with your son during the day, do you have a live in helping you? Love to know more about you. Have a great day!

My goodness! You must be one strong girl, god knows you are the angel to take care of this special child. I don't have any special needs children, but I work for a pediatrcian and know of a few families in similar situations. Stay strong sweetie, and much love and luck and prayer for you on my part.

I am brand new to this website. I am in Thousand Oaks, and also have a 6 year old son with a rare genetic disablitiy. He has seizures, and is very delayed. I was hoping to find other moms and similiar children to find as playmates/playdates-moms etc. I also have a typical/normal son who is 7 and very smart.
Thank you.
T.

Hi! I am also new here and wanted to do networking for special needs as well. Hugs to you and your son. My 3 year old daughter Alyssa has CP and a seizure disorder called infantile spasms which have completely disabled her. She does none of the things a 3 year old does yet alone the things a 9 month old does. I look forward to talking to you more.

I just wanted to say that I'm in a similar situation as you are. my daughter was diagnosed as having optic nerve hypoplasia which basically means her optic nerve didnt form all the way and her pituitary gland is smushed causing her brain not to produce the growth hormone, the hormone cortisol, hypopituitarism and she is blind. besides from all that which was diagnosed at 3 months when i was 5 months pregnant we found out she inherited an inverted chromosome from her father and that there was a 13% chance she would have some form of mental retardation. i was given the option to abort. i didnt think i would have what a child in a condition like that would need so i wanted to abort. the father said absolutely not and called me every name in the book making me feel like a complete piece of poop. he said i dont care if our daughter is a vegetable...i will do whatever it takes to take care of her to make sure she has a good life. i said ok. it turns out her condition had nothing to do with that 13% chance but either way the father does pretty much nothing. skyla is such a wonderful little girl...and she is demanding my attention right now so i have to end this. but if you ever need to vent your frusterations or just need to talk i would be more than eager to listen or whatever. my name is L. and i hope to hear from you!

As a young father he is prob.more in a state of denial then anything.But as a parent he needs to move beyond this and be a dad.Counceling/support is available for parents with kids with special needs.maybe he could attend classes/groups with you or by himself or even have a talk with clergy or someone he trusts and respects.Were you either of you in Desert Storm? My friends were and had some difficulties stemming from the chemicals etc.from then..also births had difficulties as well..I believe that if you have faith things will work out one way or the other and it will be for the best in any out come..Best wishes to you and your son.

That's so sad that you have that happen. There should be something his father should do. My daughter goes to a high tech state of the art facility therapy center that has the therapists. Too bad it's in Shreveport, Louisiana. They have a few two or three childrens hospitals in that area. I enjoy that they do it differently.

Hi my name is C. if you need anything send me an email. I have lived here over 17 years and I have a son with probles also. If you get a chance to email do so.

Hello and welcome A.. I just wanted to say good job to you for looking for other parents of special needs children to relate to, being there for that little guy, going to school full time, and serving our country. Wow! I am saddened that you are alone in this endeavor, but you sound like a very strong girl. I think it is very important that you find other parents with children of special needs and surround yourself with good people. Neither of my children have special needs, but I did have a friend who's son had Cerebral Palsey. I didn't know much about his illness', but sat down and just started talking to him one day. I was surprised that we were able to communicate with eachother. He asked for a glass of water by a make shift sign language. I brought it to him and felt challenged about how to give him a drink. I talked my way through it with him and accidentally dumped water all over him. I appologized to him profusely and cleanged him off while he kicked his feet and squirmed in his chair with a struggled smile. I think he was just happy to have some attention. I had a great time with him and realized that children are beautiful any way they come. Hang in there! You sound like you are doing a great job.

A. where do you live? so i can get you some numbers and websites if you want to be part of a support groups.(parents with kids with the same problems)
josie

I am perplexed on the part where you say the father does nothing, if he is in the Navy and active, he should be required to some degree to do something to help you. I am sorry that you have to go through all this on your own.