My daughter has developmental delays

Grace - posted on 03/18/2013

Hello, I'm going to give you a look into the future. My daughter is now 22 years old, she had had many challenges I am not going to tell you it was easy but perserverence and never accepting "No" up are key. She graduated from Highschool with integrated classroom setting and assistance and has a job. The expectations from the Doctors was so bleak it made me cry. I did not settle for that. I believe that if you only believe and accept the diagnoses and expectations they give you then your child will suffer. They are not God and they do not know what your child is capable of. First of all the best thing I could have thought of was that we started to tell our daugther as soon as she was able to understand was that she was so special. We talked to her about all the amazing things she could to do. That she has a gift to see the world and life from a different perspective. When she was having a bad day we did something we knew would bring her out of it. She is kind and intelligent and beautiful and strong, so very strong to have to put up with the bullies and rejection she has endured. Faith has been a very instrumental in her success. She wanted to go to Church, she brought me back to Church and she never misses a Sunday, often going several times a week. She said that when she felt her lowest she always knew God was there for her and that the trials he was putting in front of her were to teach her something, she became interested in everything I did. I used the "secret" law of attraction and she caught on right away. She made story boards with things she wanted to do and achieve and looked at it every morning when she woke up. She put the logo from the company she got hired at on her board and we built her up before the interview and told her she could do it and she did! I will never forget the first time she tied her shoes by herself or got on school bus and was off to school by herself. Little things parents take for granted are huge to our children. Her Birthdays and friends, her prom that she went to alone and enjoyed tremendously, she wasn't going to miss out on it because she didn't have a date. Things we would think are impossible are possible for her. Your child is a blessing, my daughter teaches me to be a better person every day! She is my best friend and we do everything together. I used to think I wished I had a daughter who wasn't MID but then I saw my friends daughters grow up doing drugs, drinking, partying and promiscuity and I was so grateful that I didn't. I know God put her in my life for a reason and I am so very proud of her. Please take the diagnoses in perspective, your child can and will do better if you just try to fill their lives with love and fun and acceptance and watch them bloom and grow into loving and productive Adults. When the road is tough, don't stop find another path, you are your child's best advocate to a positive future! If I can help just one parent to have hope then I am so grateful and my daughter has led me here to this site to share this with you.

Cindy - posted on 02/04/2013

We are really just now finding out that teaching hospitals are the ONLY ones to go to when your at a loss in finding out whats wrong with you or your children. Mom's know when something isn't right and you need to go with your gut and keep taking your child to doctors until someone figures it out and even then get a second opinion. Good Luck.

Cindy - posted on 02/04/2013

My daughter Kira is 14 years old now but was also diagnosed with Developmental Delays when she was two. She was adopted and this was very scary for us. She wasn't delayed crawling or sitting. She walked at 14 months old and talked late, we thought because of her pacifier. We enrolled her in a special ed preschool at 3(they will take your daughter even if she is not potty trained). You have to be your daughters best advocate. When you get any diagnosis make sure you follow it up with a second opinion. Always go with what your gut is telling you. In first grade the teacher wanted us to move Kira from mainstream to a special ed classroom. So I went and sat in that classroom twice and there was no way Kira was going there. Fight for anything she needs in her IEP with the school and make sure you have a Advocate with you. The school with usually cave with someone who knows "the rules". My daughter is the best thing that ever happened to us.

Robin - posted on 10/01/2012

Hi Lee, my daughter is almost 24 months, i have all the same issues as the lady above posted. Rosalie is going through testing since age 1 and we still have no real answers. please feel free to contact me if youd like to talk :)

Lee - posted on 09/23/2012

Stephanie,

Everything you've mentioned here sounds just like my daughter (now 21 months). I know this is an old post so I was wondering how your daughter is now. Did you get ant answers from the Metabolic Neurologist? I am extremely concerned. I have been to specialists and various peditricians. Still no one can tell me what (if anything) is wrong. Any info you would be willing to share would be appreciated!

Thanks.

Lee

Somaye - posted on 09/21/2012

my son Radmehr is 23 month now he was borne 6 weeks sooner and he was 1200 gr but he doesn't walk yet from 6 month ago I see some tropist but they don't help me any more, but his weight and high is ok now he dosent speak he can walk by help but he cant stand by himself ,i didn't do MRI because i think it might hurt him he crawl when he had 10 month he can sit well please help me if you know what should we do ...

Sherien - posted on 02/08/2009

Same here Stephanie... She is making very slow progress but you know what? I bet it tastes and feels better than when other children do their things on schedule!

I am really proud of her and proud of every little milestone she has reached, no matter how late it was. If they are progressing they will eventually catch up!

Stephanie - posted on 02/04/2009

I know what you mean about the comments people make.  One thing that I have noticed about my daughter is that she is making progress, just really slowly.  Pretty much on her own time.  PT/OT has really helped my daughter.  We just had her annual review and a year ago (she was about 15 months) she was not able to sit unsupported but now she is in the beginning phases of walking.  So, I pretty much have to remind myself and others that she is making progress just a bit slower than the average child.  As always though, I just want her to be happy and she is.    :)

Sherien - posted on 02/03/2009

My lovely daughter is also delayed. She is 18 months old now and does not crawl or walk. She does not even sit up as should! Her MRI shows everything is normal.

She was born 8 weeks early and was a very low birth weight (1.3kg). She stayed in the NICU for a month and doctors keep telling us not to worry....she just needs her time.

I sometimes feel she can sit properly but does not want to. She can stand supported but does not even try to balance herself to stand unsupported. She used to take steps when I held her hand but only when she wants to!!!

I hope she will catch up and I really hope people would stop making silly comments about how delayed she is!

Stephanie - posted on 01/28/2009

Of course, when we get the results I'll definitly share!  It will be mid Feburary.

 :)

Karen - posted on 01/27/2009

Thank goodness! They wouldn't put our girl under - not sure why!
I'd love to know what the results are - if you don't mind sharing - it may help with our girl too...
Take care,
K

Stephanie - posted on 01/23/2009

Thanks for the warning!  Annie will be put under for the prodecure though.  She does not understand if we tell her she needs to sit still, so we figured the only way they could do it would be with sedation.

Karen - posted on 01/23/2009

Just a warning on the spinal tap - my girl had one. Go in with her and make sure they get it right the first or second time. Do NOT let them do more than 3 or 4. It's not worth the knowing to have her in so much pain. They say they don't remember it because of the special painkillers they give them, but my girl still remembers a year later and she was only 2 when they did it. The treatment will still be the same and often you can get better answers as they get older with less painful ways of doing it.

Stephanie - posted on 01/11/2009

Yup,  She does have therapy come to see her twice a week, and we go to group therapy once a week.  She has come a long way, but is not walking yet.  She is getting a spinal tap this month to test for some metabolic deficiencies, hopefully it will give us some answers.  Many thanks to all of you who have replied. :)

Theresa - posted on 01/11/2009

my son has development delay but this is due to him being in hospital most of his life ,he is now 14 months he can only just sit by hiself cant roll over but he is trying his hardest to walk

is your daughter seeing any therapists physio usully get involved even if they come and move there legs and body it helps get the body ready so the limbs go in the right directins

they come and roll my son over and give him direction if you like does this make sence ?

good luke hope you get some answers soon

Jody - posted on 01/04/2009

My son's medical development is very similar. My son was also born 3 months early at 2lbs 10oz. Early ultrasounds at the hospital showed brain damage "white matter" or "cysts" which the doctor then referred to him having cerebal palsy.

I was very lucky to know early on that my son would likely develop differently although you can never know exactly what to expect. I definitely recommend that you find the local Early Intervention program which has been of tremendous help, not only with support for my concerns but also therapies(physical,occupational, etc.).



My son is 27 months and cannot stand or walk on his own, but he has come a very long way. He was never able to hold a bottle but now has no problem with his sippy cups. He can now walk with a walker or my help thanks to everything. He has "periventricular lymphomylacia" aka "PVL" from the brain damage in the ventricles, so his brain has a hard time getting the proper message to his muscles on how and when to move.



Don't ever hold back on asking questions or stating concerns you may have. Take advantage of your resources so you can help your child develop the best fit for them. My son's gross motor skills are challenging but he is also a very happy and smart child. I hate the unknown and find strength in understanding as much as I can. Feel free to contact me if I can be of any support for you.

Cassie - posted on 01/04/2009

i have twin boys that are 2 years old they were born 3 months early they told me they were not going to live when they were born they weighed 500 grams it took 5 months to get them home on oxegen i though when he got off the oxegen he would be ok and we could move on from the nighmare that had became our lives and he did and we went to see our physio and she told me that jamie had ceribal palasy i just cried and then my health nurse put me in contact with early intervention jamie and josh didnt roll over till age 1 they can not speak either at age 2 it turns out jaime does not have ceribal pausy and if he does it is verry mild they have a 5 people working with them and they are getting better slowly

Cassie - posted on 01/04/2009

i know how you feel