I was told dd may have dcd

[treehugnmama]

First off I work in Early intervention. I have been going through A lot with dd (6 next month) for the last year or so....no one wants to help. I keep getting told she is just a sensitive child. After hearing that OT was a 4 YEAR wait to be seen I tool her to a private ot for a session. I couldn't afford the $600.00 assessment so I just had a $100 session.

I got a call today and DCD is suspected. I work with very young children and I have had NO experience with this. I am just so sad today I have been crying on and off I don't know why. I know that my dd has something going on I just don't know that that is what it is. I am told there are no supports for her here. waitlist are 4-5 years long and even then they are seen 3 times in a school year.

I feel so lost. I don't know what to do for her. I don't want her misdiagnosed.

I have gone from thinking she was bi-polar to being told by a Dr. she felt she was gifted and that is where the sensitivities are coming from to now DCD with possible add. I just don't know what to do.

 

[Minniemama350]

I have been there. Try to remember she is still the same child. Diagnosis are merely labels for the medical community. They neither define our children nor due they sentence them to our wildest worst nightmare. 10 years ago I thought my son would never have a normal life. Today he is very happy and healthy. His diagnosis neither defined him nor condemned him. This child was given to you because you have the heart to love her and look out for her best interest. You will find your way and get her whatever she needs. Be patient with yourself and allow yourself to mourn also. It is important to complete that process so that you will be strong for her.Life will get better.

 

[treehugnmama]

thanks minniemama

 

[encinc]

My seven year old son has both ADD and DCD. The ADD symptoms are reasonably well treated with meds. He's had OT and PT since he was 2 1/2 years old for the DCD. He is doing well in a regular Grade One class now. So well, that I'm having a hard time convincing the school that he needs an IEP.

I find that the hardest part of dealing with a child with DCD is that it is a diagnosis that is not well understood. It encompasses so much more than coordination. People think that all that it means is that my kid isn't very good at phys ed. That's not the case. He has trouble will all sorts of motor planning. His handwriting has developed, but it's still really messy (so messy that he has lost points on spelling dictations because his teacher couldn't read his writing). Social skills are hard because DS has trouble managing quickly changing situations (that involves motor planning). He also has some sensory sensitivities, which I've read are common in kids with DCD too. I try to describe DCD to people as a motor learning disability, but even that doesn't encompass the full extent of his struggles.

All that said, I am amazed at how well my DS is managing his struggles. He is the most persistent kid with ADD I've ever met. If he decides he's going to learn to do something new, he will learn to do it. May take him a whole lot longer than other kids (and he may have to take tons of breaks because the ADD doesn't let him stick to one thing long enough) but he will figure out a way to do it. He's also come up with some creative strategies for social situations. He loves to manage sports activities or to take on the role of umpire or timer. It works great. He can be involved in the things that other boys do, but he doesn't have to actually play the sports.

I've certainly had my ups and downs in dealing with his diagnoses. The DCD diagnosis was made just before his fifth birthday (he was in Pre-K). I spent years wondering whether that really covered the full extent of his struggles, and desperately hoping that it would. The ADD diagnosis was made just a few months ago. Fortunately, he responded well to meds, so he's doing so much better now than he was earlier this year. I often find myself wishing that he didn't have these invisible disabilities. On my down days, I feel sorry for myself or for him. But, on my up days I am just grateful that he is who he is, and I know that he will be something wonderful in spite of his disabilities. I think that the difficulties in motor planning and the fact that he has to think about how to do things mean that he's really good at explaining how to do things to others. He'd probably make a great teacher some day, if that's what he chooses to do.

Good luck as you travel down the road of coming to an understanding of the reasons for your DD's struggles. I hope that understanding leads to more help for her, and that she can access the OT and PT services that are likely to be so helpful for her.

 

[GraceLuvsWDW]

Are we all talking about Developmental Coordination Disorder? Or another DCD? My dd has Dev Coord Disorder and has done well through OT intervention, etc. Sorry, if I am misunderstanding the DCD abbreviation.

I do know what you are feeling when a child receives a dx (any dx). It is very upsetting. But try not to focus too much on the dx, as a pp mentioned. No one person is defined by that. Have a happy birthday. Relax a little. Try to count your blessings.

 

[GraceLuvsWDW]

I also want to point out that if it is Dev Coord Dis you can do much of the interventions needed without waiting the years on the waitlist. Many of the OT strategies/tools can be employed at home. Start researching and seeing what works. Tomorrow, that is. Today, just have a happy birthday!

 

[bookwormde]

DCD is one of the easy ones for most of our kids, and a good OT can make major progress so do not worry (unless you wanted a professional athlete) and happy birthday.

bookwormde

 

[treehugnmama]

thanks you to all of you for sharing. It made a big difference to me.
I feel better about what dd is going through. The day before we also found out ds neededs another surgery (unrelated) so it was just a bad day all around...coping much better now.
: We had a another OT session and OT thinks it is a motor planning issue but not sure if it is dcd because she cathches and throws a ball rolls al ball between two pegs(but does it oddly).

She can't jump with her feet together, has a lot of fine motor issues that just popped up. (fine motor skills actually dergressed) lots of other stuff too including sensory sensitivities, drops things bumps into things, very clumbsy.

We go see a developmental ped. next week...hoping for some answers or suggestions. I hate had 3 ot sessions and am yet to get any suggestions for what to do at home.

I haven't been able to find much on the net. I find the same paragraph re-written by a differnt author but not much info. If anyone has a good book or website please share.

T

 

[encinc]

Your description of your daughter sounds very much like my son. He can do many of the motor skills expected of a child his age, but he does them differently.

The paucity of information about DCD is frustrating. I've found the information provided on the CanChild website to be very helpful. Here's a link to the parent FAQ page, but there are lots of other great things on there, including handouts for teachers about what to expect at various grade levels.

http://dcd.canchild.ca/en/DCDFAQs/faqsparents.asp?_mid_=2918

I don't find that there is a whole lot on there about the associated problems, like sensory sensitivities etc. I get so frustrated when people talk about DCD as involving nothing more than poor handwriting or being a poor athlete because there is so much more to it than that. I agree that on the spectrum of possible diagnoses, there are certainly worse ones out there though.

There's also some good info on the web about dyspraxia, which is quite similar to DCD. Many of our kids with DCD would receive a diagnosis of dyspraxia if they were diagnosed in Britain. I wish that we had the sorts of support groups etc here that they have in Britain for kids with dyspraxia.

 

[GraceLuvsWDW]

http://www.skillbuildersonline.com/SBA/Template.asp?Current=Dyspraxia+&+DCD

http://www.nldline.com/newpage41.htm

http://www.dbpeds.org/articles/detail.cfm?TextID=691

http://www.apraxia-kids.org/site/apps/nlnet/content3.aspx?c=chKMI0PIIsE&b=699375&ct=464345&notoc=1