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Hi I am new to this forum. We found out a couple of months ago that our one year old has developmental delay and will probably need special needs in the future. I am devastated and still coming to terms with this. Every mother wants the "Perfect" child!!!! We have just started the process of genetic testing and are at the back of a long queue just for tests. Most days I get on with it and welcome all the help we are getting from the health professionals, but others time I get quite down. Is there anyone out there just starting out like us or anyone with advise to keep us going. Thanks. ↓
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| Name: lindalu | Date: Jul 14th, 2006 10:00 PM |
| Have you consulted a pedatric nerologist? My daughter was also delayed, my husband and I were young we did not notice. All our family members where telling us our daughter did not seem write. She was 8 months old and could not roll, sit, push to prone ect. I spoke to her pediatrician he said not to worrie! she was just a little behind that she would catch up. He did however refer us to a neurologist. The neurologist agreed it was not normal and proceeded to do testing. She was diagnosed with Cerebral Palsy. I did find out later that she did not have Cerebral palsy but in fact she had a C5 spinal cord injury. ↑ |
| Name: slillianc | Date: Jul 15th, 2006 6:26 PM |
Hi!
I think I wrote your message. Our daughter is 21 months old and 3 months ago, we talked to her pediatrician about her delays. At that time, she wasn't walking and wouldn't even try and not talking. Now she IS walking but still not talking. We see a speech therapist 2 times a week and are about to start tests. The speech therapist doesn't feel that she's improving the way they'd like and are concerned. So we talk to her pediatrician on monday to see what her recommendations are at this point. So I know how you feel. It's really hard! I'd love to talk to you more about this. You can email me at slillianc@yahoo.com ↑ |
| Name: jbooth76 | Date: Jul 17th, 2006 1:18 PM |
Hi
Thanks for the messages. I like in the UK and are currently seeing a neurologist and neurosurgeon. At three months old her head stopped growing for a short while and they thought that she had Craniosynostosis which would have meant an operation to reopen her skull depending on her development. They then said at 12 months that this wasn't the case and that it was a problem with her brain, that is why we are starting genetic testing to see if they can pin point a diagnosis but aren't too hopeful. She is now 16 months old and can not sit yet but is managing to roll around. It is just the thought of not knowing what she will and won't be able to do. That is why I was appealing on this forum for any like minded people so that we can keep each other going. Thanks again for your replies. ↑ |
| Name: Telem | Date: Jul 17th, 2006 1:44 PM |
"Developmental delay" is a broadly used phrase and the challenges that it may pose can range broadly. The unknown can be stressful, and with very small children, rarely can anyone know the future. A few things to remember are: people who do have these challenges in their families do not understand - ignore them and find other parents who can relate; and you need to focus on your marriage. Your child will achieve the most that s/he can only if you are happy.
Although everyone want the '"perfect child," there are none. Just as your parents loved you for all of the challenges that you gave them, you will love your child in the same way. ↑ |
| Name: za5ofus | Date: Jul 18th, 2006 3:39 PM |
First it is hard getting the diagnosis that something is wrong with your child . It's hard to except but you must move on and do what is best for your child. I'd start with early intervention. They can come right to your home and start therapy with your child. The sooner you work with him the more likely he may be to outgrow it and if he doesn't he is going to be farther along than he would have been and making good progress towards goals.
I have two sons with disabilities . The oldest is delayed by two years and may never catch up but he is sweet, can get a trade when he's older and make good money. You have to think what can he do not what he can't do. My middle son is being diagnosed with ADHD. It's not going to be easy but with your love and support your son will improve. Be an advocate for him and do all your can to get the help he needs to succeed.
((( Hugs to you)). You'll get through this and will be stronger because of it. ↑ |
| Name: Naseem | Date: Jul 31st, 2006 4:02 PM |
Hi there. I am also new to this forum. I am a mother of four children of which three are special needs. My eldest is diagnosed as being autistic and my two younger children have developmental delay with behaviour problems.
I know how it feels when you are given the news that your child has special needs, I too felt devastated but I get by looking on the positive side of things. I don't compare my children to others, what I do is look at how they were a year ago and see the progress they have made.
As for genetic testing, we've been there done that. We were told that we both carry a gene that results us in having children with special needs. My husband wants to explore this further but as for me I just want to get on with giving my children the best start in life.
My name is Naseem, feel free to get intouch with me if you want to ask any more questions.
Take care ↑ |
| Name: jbooth76 | Date: Aug 3rd, 2006 4:58 PM |
Thanks for keeping me going. It is good to read your replies. Everyday I try and keep positive and look on the bright side. "She must have been given to us because we are special people" It is hard to keep positive all the time. Tomorrow we should have been going to see her neurosurgeon and of course I got myself worked up because one appointment you are given good news then the next it is bad news, then to be told tonight that the appointment has had to be cancelled and we don't know when it will be held next. In the meantime, we now look towards the next hospital appointment with the orthoptics. It is one thing after another as I am sure you all know. Sorry to ramble.
It would be nice to know what the future holds so that we can be prepared. Will she walk, talk, go to mainstream school? The start of a very long road with no answers!!!
Thanks for reading. ↑ |
| Name: autumnmuhr | Date: Aug 7th, 2006 8:56 PM |
I know how you feel 100%. I have a three year old that has special needs and they dont know why. When he was 6 months old his dr. noticed something wrong with his eyes. come to find out he has ocularmotorapraxia (cant track worth a damn) . So then we do MRI's ...every thing comes back normal. He is big motor development problems...dident sit up till 10 months, crawled at 14 months, walked at 28 months ect. and they dont know why? He went through a battery of genetic testing which was VERY scary. All of thoughs test came back normal. He finaly got diagnosed with autism in October but they are not 100% about that either.
If I could give you any advice at all is get a GREAT doctor. Your dr needs to be behind you and be willing to get all the test and recomend all the thearapys. I know it is a hard thing to go through but having a special needs child is a blessing in disguise. Talking about it really helps too. If you ever need to talk or anything I will be there for you. Hang in there honey it does get easyer. ↑ |
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