Advise from Moms with Special Needs Children.

No one gets the child they imagined...nor do you marry the man you imagined, have the life you imagine, I can't imagine that is where you are at.

Only children try to live in their imagination.

My oldest are adults and I can't even remember what I imagined anymore. I imagined two arm, two legs, two eyes all that stuff but who they would be, I never dreamed to imagine because that is theirs to decide.

I don't have normal kids, they all have disorders, but I never focused on what could be, just what is. I never assumed they were limited by their disorders it was just a small part of who they are. They are amazing adults, one exceptional by any standard. The third is autism spectrum and even he dwarfs some "normal" kids.

Let go of the issues, they do not define the child! Every child gets to define themselves, let them!

I am in a similar situation. My son is 6 and quirky, AD/HD and a bit academically and socially delayed, but not autistic (according to several assessments) and I struggle with what to DO for him. I never feel like it is enough. He is a twin and his brother is doing well academically and is also super-competitive, which complicates things too.

H. Beth-

I have a special needs kiddo as well. My now ex husband was not able to deal with the challenges I guess. He turned to alcohol, we divorced, and he is in end stage liver failure as I type this.

My daughter, has taught ME more in her 17 years on this earth than all of her 6 siblings combined. I credit HER with shaping the wonderful adults my kiddos have become.

She has taught patience, kindness, acceptance and appreciation of all things in life. These are lessons that my kiddos would not have learned without Shannon.

Period.

She has made me a better mother, child advocate, and person than I would have been had I not been blessed with her in my life.

She has become a sort of 'ambassador' for special needs on her HS campus. She is developmentally about 4 or five...and what a beautiful age that is - to be honest!! For her, there will always be santa, the easter bunny, and the joy in all of the little things 'we' as adults do not always take the time to appreciate.

She is my touchstone. She makes me slow down and appreciate, through her forever childlike eyes, the wonder of the world around me.

She amazes me daily with the many things she IS able to do.

She is my gift.

Please PM me if you would like.

All the best to you and your 'gift'!

You are brave to admit this. Once you are done raising your children, no matter how "normal" they are, you really realize that they become the people they were meant to be, not the people you imagined them to be. They have a right to be themselves. They were not put on this planet to please us, or to be what WE would want them to be.

I think most parents will ultimately find that in one way or another, their kids turn out differently than they had planned. These differences are more marked in some children, but I really think that many or most moms ultimately have to come to terms with letting go of certain dreams they once had for their kids.

Therapy will probably be good for you, but just try to tell yourself that your daughter is exactly the person she was supposed to be. Remember, this is her life to live, not yours.

Take care.

I think Rosebud said nearly everything I would have wanted to say.
Hugs to you for being brave, realizing you need some support to grieve this, and to move forward fully embracing being a mother to the child you do have.

For what it's worth, we all carry burdens and grieve the losses of people in our lives who challenged our expectations. Sometimes it is our parent or our spouse instead of our child. You are trying to be healthy, and that's so important.

Life rarely turns out the way we planned it. Having expectations leads to having disappointments. I believe it is a Buddhist philosophy to expect nothing and you won't ever be disappointed.

My son was special needs but he passed away. I could drive myself crazy with the what ifs but instead I just don't go there. I know this is much easier said than done but you can learn to train your mind to get rid of unproductive thoughts.

Best of luck! Your post really touched me and for what it is worth...I think you are very brave to admit your feelings.

You are being so brave and honest here, telling everyone your darkest fear/inability to handle this.
Hugs.
At least you are getting help for yourself. That is wise.

Feeling duped or not.... well, I have a Cousin, who has a child, who has Down's. It was hard for her at first. She was even disappointed. This was their first child. They are not old. Then they had a 2nd child. "Normal" kid. Anyway, with their Down's child, they just embrace him for who he is. They are very active in the arts and performing world. And they also include him in that. He has even been in plays and performed in Theater! They "brag" about him just like any parent would do with a "regular" child. And they just do the things they do with, with their "normal" kid too and include him. So their Down's child, though special needs, has a pretty normal life etc. And they really adore him. He brings different types of "gifts" to the family. Even if he has Down's. And they get him any needed therapy that he needs, to help HIS development etc. The kid is happy. So they feel okay about their parenting, him. He is loved. And their other child loves her sibling too. It is their "normal." This life. With their Down's child.
Trying not to get hung up on what ifs. Or comparing their life/children, to others.

Such an honest post. I'm so glad to hear from a person who is human!

I was told my child would never attend a regular school, read, or speak appropriately! I said you are so wrong and would not accept it. I made sure she got the best appropriate program and services. She worked hard. Ok. Fast forward 26 from the date I was told she would never attend a regular school. She is a surgical tech I. The operating room, a licensed EMT and volunteer firefighter. Is she still quirky socially, yes but she has a nice boyfriend, she drives and is an incredible human being. Kind and gives of herself.

Why are you accepting the she Will never be normal. You should be fighting for the best services you can get for her. I let myself be sad for two weeks but then picked myself up by the bootstraps and became an incredible advocate for my child and others. Get to work Momma. She sounds like my daughter.

She will only succeed if you instill confidence in her. This will not happen as long as you continue to feel like you have been duped. Quirky is not necessarily a bad thing. Give the kid a chance.

I just read your post. I know exactly what you are going through.The other night, I watched one of the Joel Osteen shows. He had a strong message that went something like this: In your car you have a front windshield and a rear-view mirror. He said that no matter what you are going through, you need to place your trust in the Lord and go forward because if you keep looking in the rear-view mirror......

I am very spiritual and that has helped me. So, I do tune into spiritual shows and books.

Keep positive...A friend of mine has a child who was delayed, had sensory, had anxiety, was very socially awkward and so on...She went to one of the best colleges in the country this year. As she got older, her writing was discovered. Even though she always struggled...Her writing got her a scholarship to a college that was over 50 grand a year !

I know how you feel. It's hard getting passed what we thought would be a future to what we are dealt. I had a hard time for years dealing with my sons special needs - mainly the behavioral aspect. I have reached out to other moms that have children with my sons diagnosis. I read as much as I can to help understand. I have grown as a person - I believe I am a stronger and more supportive person than ever before. My attitude has changed but - that doesn't mean that many days I don't say "why me".

I grieved the fact that my son isn't typical and from time to time still do "wish" I knew what it's like to have typical son. However, in all honesty I've realized that any and all hangups are mine and mine alone. My son is amazing, as I'm certain your daughter is as well.

STOP STOP STOP feeling bad for yourself. Your daughter is who she is and she will be whomever you take the time to help her to be.

I find the statement "I'm sorry" whenever anyone finds out about my son to be a slap in the face. What are people sorry for? Why waste your time feeling sorry for others or yourself when you could be congratulating your child on their accomplishments? Special needs children come in just as many varieties as typical needs children and with that they bring a different(better!)way to understand the world, yourself included.

Look deep inside yourself and work your butt off on accepting your daughter so you can enable her to be the best she can be! Normalcy is overrated.

Think about this....What is normal? The great kid who can play sports but struggles to read? The beautiful girl who everybody wants to be just like but she hides an eating disorder because she is not perfect or sexually abused, or beaten?
There is no normal we all struggle.
Did you know Bill Gates, Donald Trump and Dan Ackroyd all have Asperger's and Ackroyd also has Tourrett's? Tom Cruise has dyslexia so bad he can't read at all. Henry Winkler is also dyslexic and has a Master's degree from Yale. Whoppie Goldberg is also dyslexic and a herion addict -- clean now for many many years.

Special needs does not equal failure. It means she learns differently but she can learn, she can love and she can progress. She may surprise you. But you have to let her and you have to be her warrior and her cheerleader.

I have 2 kids with dyslexia and a granddaughter who is autistic but in my eyes they are perfect.

You don't ever fully get over it. You have those days when your heart breaks for your child so much you just cry and cry until you fall asleep. Allow yourself to feel sad your life and your child's life is 100x harder than it is for others.

I hate being told, "God never gives you more than you can handle" or "God meant for you to have this child." Hate those. It's not true. You got dealt the unfortunate draw in life and that's that.

Our son has a huge list of conditions and it just has gotten worse over time. Started with ADHD and now includes an eating disorder, ODD, OCD, anxiety, encopresis and depression. The hardest thing for me as a parent is that I can't fix him. You want to make things right for your child and you can't always do that through your parenting. With our son, it's medication and therapy that helps him. Even then, every day with our son is a battle of some sort. Maybe he's throwing things at my head because I asked him to do homework. Or maybe he's refusing to eat and I have to fear he's going to be put on a feeding tube if he loses the weight we worked so hard to help him gain. You just want your child to lead a normal, happy life and some days it's just plain impossible. I have a neurotypical child, too, and she's piece of cake in comparison.

I dealt with depression a couple years ago as a result of our special needs son and medication helped a lot. Take that step and get help for yourself. Also find online boards related to your daughter's conditions. Join associations. Only people who've walked in your shoes understand and it can help a lot to connect with them.

You will start to see the bright spots. Little gains are HUGE ones for us. Appreciate every tiny gain you're given.

The only advice I can give you is to remember, God did not put her in your life to meet your expectations, special needs or not. She (and any child for that matter) is a gift. It may not be the gift we were expecting but a gift none the less. Appreciate the the smallest things, a smile at you for instance, it will make you a better person. If you really are having a hard time accepting her as she is, imagine yourself in her shoes. Would you want to be loved any less, feel like you're too much work, you take too much time up from someone else? These children never had the choice but to be who they are. And imagine how frustrating it can be for her.
Try hard to be positive about everything when it comes to her (or life in general) . If it takes an hour instead of 30 minutes,it is time well invested and if she makes progress that is an extra bonus. You could have a child who will never walk or talk, be able to do "normal" things,remember there is always somebody worse off than you or your child. Be thankful for what you do have. I have worked with children who will never walk or talk or even eat normally and I learned alot, especially about patience. They are loving and do have personalities which the general public doesn't see. It opened my eyes in a big way. I also have an autistic grandchild and it can be trying but the rewards are worth it. Continue to go to therapy it should give you a new way of looking at things and cause you to be more accepting of her shortcomings. It won't always be easy, but, whoever said anything would be !? Take the start of everyday as a new beginning !
Best wishes,C. S.

Hi H. Beth. My son is 6 and "mildly" special needs. I'm not sure why, but if I did go through this, It was mild. I think part of me may have expected it a bit, or at least prepared for it because we have autism in the gene pool for our family.

It's ok to feel some loss, but for your daughter's sake, you have to deal with it. It's great that you have come to the point where you're not happy with the feeling of loss taking up so much of your time. Acceptance is a tool for dealing with reality. If you keep holding on to the idea that you were "duped", you will deprive yourself of so much more than the DREAM/FANTASY of the "normal" child/motherhood most of us expect.

I recommend a blog that I read over the last few months - 5 years of posts that made a big difference for me. They will lead you to other blogs that may also help. Visit adiaryofamom.wordpress.com - Jess is wonderful. She has a "typical" daughter and an autistic daughter, and she details her journey from diagnosis to the current day. Her writing is beyond great, and she really digs deep into her feelings and shares them. She is an activist for special needs kids in addition to working full time.

She also has a "community support" page where you can ask questions.

Do get some professional help for this if you don't feel you can let go of the resentment on your own. Kids aren't stupid, so you have to deal so your daughter doesn't continue to pick up on these feelings that you have about her/her disability.

Like JB said, my special kid has made me a better mom, because I have to THINK when I parent. I have to empathisize with my child because things that upset him, or challenge him are not "typical", BUT they DO make sense when I try to look at things from his point of view.

PM me (click on my name) if you want to ask anything privately.

If your child has autism, there is a powerful piece written by a man with autism called "Do not mourn for us"; it deals with this from the other side - the "mourned for" side. It speaks to the needs of the special child that wasn't expected/planned for/dreamed of. It's a tough, direct, blunt read, but it may be helpful. If you don't feel ready for it, that's ok.

http://www.autreat.com/dont_mourn.html

H. Beth, for one thing, I am glad you are on here trying to vent this out of your system.

I will start with when my daughter was born, one ear was rolled up like a rose bud, it unfolded. I don't remember which one it was.

She went all through pre school and started Kindergarten, before we really realized she was a mirror writer and reader. Was it a pain in the @$$ to teach her, yes, of course, but she reads and writes from left to right now. It is a pain in the @$$ to take her to Kumon twice a week on my own time, while I sit there and wait for her. What should take a half hour sometimes takes an hour. Is she special needs? Nope. Not when I look at my neighbors FB page and see her son I never knew on her cover page sitting in a baby seat at 7 years old. He never walked. Which just brings to mind my friend from long ago who's son was never suppose to live beyond his teens and is still sitting in a wheelchair today.

Please dig deep inside and find that inner self that loves that baby and let it just be that. Let go of all the wishes of what she should have been.

2.5 years ago I had a back surgery, due to an accident in my home. Some days I hurt worse than others. On the days I hurt I wish I had the placard which allows me to park in the handicap parking. Then I see my inspiration, Ms. Wheelchair Nevada. I know I better keep walking when I see her pull a wheelchair out of the backseat of her car and open it up, then lock it, then pull the board out, place it from her car seat to the wheel chair, then slide her body out of the car across the board, finally into the chair and picking up her legs with her hands and placing them in their harness, then put the board back in her car and now she can wheel herself into the office. Oh and hope she didn't forget to put the placard in the windshield.

Anyway, I wanted to make this short and sweet and I have carried on. You have a blessing, just love her and enjoy her.

It is ok to grieve, but you need to find a way to let it go so you can love/enjoy the child you actually have.

A lady named Kelle Hampton wrote up the birth story of her daughter, Nella, who was born unexpectedly with Down's Syndrome, for her blog. It is heart wrenching and very well written. http://www.kellehampton.com/2010/01/nella-cordelia-birth-...

I hope that your therapy helps, because I'm worried that you do/will resent your daughter for being who she is, and that's not fair to her.

I do not have a special needs child, but I have a special needs sister, so I can relate. I am 33, she is 37 and I STILL struggle with feelings of guilt over the fact that I am the normal sibling. I still struggle with feeling 'duped' for not having a normal sister. I love her tremendously and I would give anything in the world for her to have the normal life that I have. I hate to say this, but I have always resented my parents for not having another child. (it is only the two of us.) I would have liked to have another sibling so I can have another person I can talk to about it and another person to share the burden after my parents are gone. I'm not trying to be downer, but I will tell you, for me, I've never gotten over it, and I've learned to accept the fact that I won't get over it (which actually helps...). I hate when people tell me it was God's will because I can't imagine God wanting someone to suffer like she and my family have. No one understands unless they are actually living it. My only advice is to love her unconditionally and to remember there is always a child worse off than yours.

I'll caveat this with the fact that my child's "disability" is very mild. My oldest son (15) has ADHD and learning disabilities. School is hell for him, but other than that, he has been able to make good friends and find activities (guitar, hockey) that are a good fit for him. I realize that compared with children who have developmental delays and physical impairments that this is small potatoes, but I wanted to let you know that even diagnoses as mild as his gave me pause and made me mourn a bit for what I saw as lost potential. I was an excellent student who loved, loved, loved school and found school to be the most positive, validating experience in the world. To know that he would never know that feeling was hard to take. To know that his efforts would be disproportionate to his rewards made me sad for him. My middle son (9) is also "off" somehow and we don't quite know what's up yet. He's very smart but very disruptive and obnoxious, possibly ADHD. Whatever the case turns out to be, he's another one who will need special attention and handling along the way.

Two things have helped me. First, having a child who is not typical has made me a much better person. My oldest son has stretched me and challenged me from day one. I am a better mom, better friend, better educator, better advocate, better person because he has challenged me to be so. That's his gift to me. To make me compassionate, and aware. To make me use the things that come easily to me (learning new info, writing, speaking, participating in things) to advocate for those who struggle. I do test prep instruction on the side and without living through this with my son, I wouldn't be able to help my LD students and their parents through the test prep process and help them to succeed as well as I can, because I do see it, and live it, and get it. I wouldn't want to go back to the somewhat oblivious (and arrogant) person I was before, who thought that everyone shared the "if you try hard enough, you'll succeed" experience when we know that that's just not true.

The second thing that helps me is perspective. I know someone whose little boy has mitochondrial disease. He just started Kindergarten this year, a milestone no one thought he'd reach. He treasures every day of getting to go to school and hang out with his new friends. Off he goes each day with his oxygen tank in his back pack, his gastro-stimulator "button" in his belly, ready to take on a new day and love it, even though it wears out his body and leaves him exhausted for the rest of the day. His parents and siblings have no idea how long they'll have with him (they know many other mito kids who have died younger than their son, or by age 12 or 13). My kids are all fine in comparison.

I have another friend who has a disabled adult son and whose youngest son, now 5, has quadriplegic cerebral palsy. He can't move anything below his neck. He can't speak at all. He can't eat or breathe on his own. He's legally blind. He lives in a hospital bed in his family room, hooked up to a ventilator, a g-tube and a j-tube. But he recognizes his family, and he smiles, and he hears, and makes noises to music. Again, the cross my kids and I bear is non-existent next to the one borne by this boy and his family.

I think it's great and healthy that you recognize your feelings and are talking to someone about them. I think you need to give yourself permission to grieve and mourn so that you can then focus on the positive and keep looking forward. And try to think about how being your daugther's mom has changed you for the better, and keep perspective.

I think that finding a group - even an online group - of other moms with special needs children can be really helpful. It makes you feel a lot less alone, gives you someone to bounce ideas off of, helps you learn what might be coming down the road and can just be comforting to know there are others out there just like you.

You are not a bad person for feeling the way you do and I am sure you an excellent mother to your daughter. Even more so since you are trying to get help.

I'm going to PM you a link to my friend's blog. Her daughter has cerebral palsy and, at 5 years old, isn't walking, just got her first wheelchair, and still can't speak as clearly as her same-age peers. It's great to read her posts, and to see the conflicting feelings as her younger daughter continues to surpass the older one in ability. Also on her blog are links to many other blogs of special needs children. It can be a great way for you to start finding a community of moms like you.

My son is 10. Last year he was diagnosed with Asperger's (now a defunct diagnosis, it's all autism spectrum disorder now) and ADHD.

My husband and I were relieved. We've known since he was about 5 that something was off with him. I say wrong, for lack of a better word. He wasn't like the other kids his age. Socially-emotionally he was behind by about 2 years. *I* thought it was because of ear infections that we, his parents, never knew about because he didn't show the common signs/symptoms of one.

So, my son is not "normal". He's still my son. So he wasn't a super cuddly baby/toddler. Yes, he seemed to get sensory overload easy. But he's super smart and in our school district's version of the gifted program. He's generous of heart and spirit. He'd give you the shirt off his back if you needed it. He LOVES to help. He hates doing his chores. He hates his little sister "pestering him all the time". He doesn't like getting messy.

I could go on and on. Instead of always looking at what you DON'T have with your daughter. Look at what you DO have. Celebrate her, as she is. Celebrate the differences. Take it all one step at a time. Find something small she does that makes you laugh.

It's a process. Not everything my son does is appropriate or acceptable. Just tonight he was hitting/kicking me too hard in Taekwondo class, even though he KNOWS I'm pregnant (7 weeks) and my opponents need to hit me with light-no contact. He also tried fighting dirty with me; attacking me with my back turned.

I also think you're doing the right thing by getting some counseling.

I'm glad you're getting help. We have 3 boys and our middle child is special needs (complex heart defect). His heart defects were discovered during the 20 week anatomy scan. The rest of my pregnancy with him was a complete blur--so many appointments, tears, tough decisions, etc. We were told he may not survive to be delivered or may not survive much after birth. I did not want a baby shower--nor did I want to set up his nursery. We knew best case scenario was open heart surgery shortly after birth and a very long hospital stay. We knew he would need 3 open heart surgeries, at a minimum. I didn't get to hold him when he was born. He was transferred 2 hours after birth to a Children's Hospital. I had to stay 5 nights at my hospital because I had to have a c-section (because of his defects--docs felt it was best). I had to pump instead of nurse because he was intubated and on a feeding tube. I also had a 2 year old at home that we barely saw that month because we were living at the Children's Hospital. I could go on and on...I definitely had those "not fair" moments and thought "why me" "why him".

But, I know I am a better person now. I know he has taught me a lot. He had his 3rd open heart surgery in July and I am so grateful that is not hanging over our heads anymore (although we do know more surgeries or a transplant are possible).

Focus on the positive she has brought to your life. Focus on the positive she can bring to others. Does her "difference" have a name? Can you raise money or awareness for that "difference". (We work closely with the American Heart Association).

Here is a really awesome story I watched recently. Do not be ashamed in how you feel. YOU ARE NOT ALONE!!!

http://www.buzzfeed.com/ryanhatesthis/this-story-of-a-fat...

I'll start with a caveat too: My son's special needs are very mild as far as these things go. He's got muscle tone and coordination issues to the point where he can't print legibly, play sports, or even button his pants. And he's a year or two behind where he "should" be socially. But he's academically advanced; he fits into the "twice exceptional" category.

So, if you still want to read this, I believe so, so strongly that your daughter is fine. She's doing a great job being who she should be. Does she have challenges and hurdles to overcome? Of course, we all do. But she's not "wrong" because she defies society's expectations for what an 8-year-old girl should be. The problem is that our society is very intolerant of difference and doesn't make space for other-than-average kids.

Which leads me to my thought/recommendation specifically for you. It seems like you're directing all your grief and frustration inwards. You're angry at yourself because you're frustrated and you're grieving the expectations that didn't come to pass. Well, everybody has those expectations! It's normal and natural for it to be hard to let them go. It's not human nature to fall immediately into a state of peaceful acceptance. But, I do think you might have an easier time of it if you directed some of that frustration outwards -- at a world that's never as accepting and accommodating as it should be, about a world that never gives special needs kids (or their families) even a fraction of the help and support they need. Does that make sense?