July 10, 2008,
K.F. asks from Oregon City, OR on July 08, 2008
2 Year Old That Has Global Developmental Delay
I was hopeful to find another parent out there who is experiencing global developmental delays with their child. It sounds wierd to hope another person is in the same boat but it's a lonely boat. My daughter is 2 years old, she doesn't speak, crawl or walk. She has her own special silly way of getting around and knows several baby signs, she's also recently had bi-lateral foot surgeries and has a G-tube. My goodness she's got so much going on. I have nobody who can relate to my tears with the exception of my husband, even then I think he's getting a bit tired of me. Shoot, I'm tired of me.
I really have a difficult time because I know what she should be doing, and I see all the children her age in our neighborhood doing what she should be doing. My heart is a little broken and I'm feeling more than a bit sorry for her and myself.... She's the happiest child I've ever seen, and so very adorable.
We've recently seen a geneticist, he didn't make me feel a bit better, I suppose that's not his job. I'm just feeling, I suppose, very worried, jealous, frustrated and alone.
Here I have my wonderful baby girl but we spend so much time in PT, OT, speech therapy, feeding therapy, doctors appointments, specialty appointments, home visits from early intervention etc... Our life isn't normal. I just want someone I can bounce our normal off of. I want normal. Maybe I just need a kick in the butt.
Well thats my "woe is me". Encouragement is always welcome. Really sad stories that would make me worry even more aren't welcome. Prayers are needed.
D.L. answers from Portland on July 09, 2008
Hi K., You sound like an amazing wonderful mom. I don't have any children with global delays, but my son was born with a severe hearing impairment and he has some other minor delays as well so I can relate a little bit to all the speech therapy appts and physical therapy appts. It's a lot! You always want your children to be perfect and it's really difficult when they have problems that you weren't expecting. It's really opened up my heart to appreciate other challenged children and I've realized that these children are usually happy! We see that they are missing out on things and we feel guilty, but there's no need! My son and your daughter have a special uniqueness - they have a different design and a different purpose than we do. I know my son doesn't have nearly the difficulties that your daughter has, but it has helped me to start looking at him for who he really is and not for who I wish he was. Idon't ever want him to feel bad about who he is,so I've decided that I'm not going to feel bad about it either (that doesn't mean that you don't have hopes for them todo better and definately keep working on it!)Sometimes I think we are the ones who are missing out on life because sometimes these special children see life in a simpler and more profound way without the business or the stress that being "normal" can bring. don't let your daughters delays stop you from treating her like a "normal" child as best as you can - take her outside to play even if she can't run with the other kids, just like I'm still going to take my son to the symphony one day even if he can't hear it very well. It sounds like your doing a great job, and I will pray for your family! I hope this helps encourage you in these difficult times. D.
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J.B. answers from Portland on July 09, 2008
I can relate to having a child that does not do everything on "normal" timelines. My son was always on his own schedule. His speech was early, his walking was late. His fine motor skills were late, and he didn't nap (ever) or like to color. And potty training was a whole other mess. At one point I remember being so frustrated and miserable I hated being a mom. That night I got on my knees and asked the Lord to restore to me the joy of motherhood...not to fix the problems, but give me joy. The next morning I woke up with joy AND He sent some information my way that led to the beginning of the solution to our biggest problem via another mom. That's so like Him.
My situation isn't as all encompassing as yours, but to me it was that bad. I felt like the only person who was dealing with such issues and yet I knew others dealing with harder ones. But my load was heavy to me as yours is to you. But one thing is the same...God knows what you are going through and, in fact, He chose you to be your daughter's mom. "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." Jer 29:11 Your daughter is part of that hope and future. In the most difficult of situations, we can find comfort and peace in Him. In fact it is in the darkest times I've felt closest to Him and He has used those experiences in me so that I in turn, could encourage others. As I desire to do today.
Each step, each challenge you go through with your daughter is a step toward your future. You can allow it to beat you down and paralyze you or you can let it challenge you and strengthen you and draw you into His presence. I don't always do it right, but when I persevere and press in, I am amazed and humbled.
I recently met a woman at my church that has a child with similar issues as you are facing. She also has four other kids she homeschools. But when I talk to her, there is nothing but joy. She challenges me to "rejoice always".
I wish there was more I could do or say for you, but for fear of exhausting your patience or saying something that will come out all wrong, I humbly conclude with a promise to pray for strength for you and welcome contact from you at any time.
2 moms found this helpful
N.Z. answers from Portland on July 09, 2008
Maybe you could put up a notice at the offices you go to, and invite parents like yourself to get together once a month or so. I met many parents with children that were special up at Shriners when I took my son there.
Even though my son doesn't have many lasting/visible effects of his CP, we have lasting memories of the kids that he played with or just visited with up at Shriner's. To an 18 month old, a kid in a wheelchair with a g-tube and braces on their limbs is just another kid. Even now, he just thinks of kids that are special (because they are!) as people who do things differently.
Hang in there, I hope you find the support and parents that you can visit with.
2 moms found this helpful
J.R. answers from Portland on July 09, 2008
I was reallly touched by your story. Between the worrying and the appointments you must be exhausted. I think it is a great idea to reach out to other parents in the same boat. My daughter was involved at P.N.C.C., and I think they should be able to help hook you up with other parents. On a note of encouragement, we went through OT, and PT and feeding therapy with my daughter (she was g-tube fed for 2 years) and is now doing very well at age 5. (Well actually she is currently in time out :) !) I also found a lot of support online at the various list serves dealing with children's health. THere is a ton of info out there that the Docs don't know about. My best advise to you though would be to take good care of yourself. You have a big job, and you need support, rest and breaks. And how wonderful your daughter is so happy. It sounds like you are doing an amazing job!!!! But you are right it is a lonely boat, and you need others who are on this journey. Good luck to you.
1 mom found this helpful
D.W. answers from Portland on July 09, 2008
I would suggest asking your doctor or EI for support groups in the area. You are not alone and your feelings are quite normal. Please know that your daughter does not know any different and only knows herself as "normal". My daughter has CP and though it is mild now, it wasnt always easy. She was not able to sit up or eat solids along with other issues. We spent alot of time with therapists as you mentioned and I had to carry her around all the time, as she couldn't entertain herself. She didnt know any different and is thriving in her happiness now. Your daughter is just fine and perfect as she is, you are the one that needs to take care of yourself. I really hope you can find some resources to offer you some support. You may also look into some respite care for yourself, if needed. I commend you for reaching out for support, as it is not always easy as a mom, to admit you are human. Keep up the great work
M.M. answers from Portland on July 10, 2008
I, too, just wanted to say that you sound like an awesome mom and your daughter sounds adorable and precious. You definitely don't need a kick in the butt!
I'll be praying for you, your daughter and your family. M.
K.H. answers from Portland on July 09, 2008
hi I just wanted to say you sound amazing and that you are doing amazing! I will be praying for you!