Just Need Some Support and Encouragement

Hi A.
Keep your head up you'll make it thru those times! :)
I have two kids, my daughter is 6 and my son is 3. My son was a micro preemie and has global delays (OT, Feeding, Speech, Physical Therapies, he looks and acts like a 15month old) as well and a very fragile health that seems to attract colds/flu like nothing else.
He is not talking yet either other then the babytalk and a few words thrown in here and there and walking, well he showed he can but seems to choose not to do it. There are some days where I really question how long I can stay sane between running from therapy to therapy, doctors appointment to doctors appointment, the older ones hobbies.... Especially seing other kids my son's age and getting 'the look' whenever I'm answering truthfully about questions of my son's age.

I'm a SAHM with two kids and two Labs, so I had to write you! lol And I'm usually a very very patient and uncomplaining person as well that had her share of those days where you have it up until here and totally understand! :)
S.

Hi A.,

Although I am reading this two weeks after you wrote this, I want you to know what a great job you are doing for your son. I have a severely developmentally delayed son, he just turned 8 yrs last week. We also have therapist constantly in our home. It can be overwhelming at times. My son does not speak and when he is ill, it is always a guessing game. It can be quit frightning, but thank goodness for mothers intuition. I just want to share with you what the mother of my girlfriend told me. I was having a difficult day and my girlfriend told her mother what was going on that dasy. The next day, I received a card in the mail, a mother's day card. It was not mother's day. I thought that was odd, until I opened it. She sent a little note of encouragement. She said I know you must be a wonderful mother! God must have look down on you and sent you this wonderful child because He knew you are so a very loving and patient mother. Later in the day, I received a dozen roses with a lot of babies breath. This really made my day!

I was so thankful for someone taking the time and effort to do something so nice for me. My son is my 5th of 6 children and on days that it become frustrating, I remember what a wonderful compliment another mother gave to me.

A. (((hug)))...I have a nephew with autism and my daughter has a learning disability that is disabling enough that she receives 8 hours of speech therapy and tutoring a week outside of normal school. I've watched my brother and sister-in-law invest so much in helping their little boy...at times he goes forward and then seems to backtrack...then forward again and so on and so on. I can't predict the future for your son, but I can tell you I have faith that everything will be okay. You are obviously a caring and concerned parent and doing everything you can for your little boy...AND he IS progressing! That's wonderful! With this combination, I just have faith that everything will be okay. I have to remember that when it comes to my daughter, I do much better if I've had sleep, decent food, a little excercise and am not feeling lonely and stuck inside my own thinking. Some days are better than others for me...and in spite of whatever my days are like, my daughter keeps moving forward...and no matter how my brother and sister-in-law feel, even the backtracking is part of my nephew moving forward. Hang in there...one of the best days of my brother and sister-in-law's life happened a short while ago...my nephew said (at age 4), "I love Daddy and I love Mommy." That is not a miracle, that is a lot of work, effort and love that feels just like a miracle!

HUGS FIRST OFF!!!!!
It will get better. As he gets older, he will make more strides. He is still young and other kids his age aren't even talking up a storm yet. All you can do is be proactive which you are and get him the help he needs.
He will not starve himself. The flu this year is a different strain then the shot was all about, so he was protected not from what is going around. It is safer to do the shot as a precaution but never a guarantee.
Try popsicles, gatorade (my kids hated pedialite). As he feels better offer him the foods he likes, try Pediasure too that has lot's of calories and vitamins.
Hydration is way more important then foods right now.
You seem like you could use a day at the spa, get a massage or get a break. You deserve it and need it to regroup. Don't feel guilty taking care of yourself!!!!!
I would ignore him when he whines, be firm and treat him as he doesn't have a disorder and then he will forget he has one himself and strive to speak more. Just say I need to hear the words, not signing or whining.....
It is common for boys especially to just want mom, you are the one that has been there for him most. However, don't let that deter you from getting breaks, he will not be traumatized without you for a few hours! You have to.
You sound like a great mom! He knows you love him which is why he trusts you so much.
It will get better, pray daily, turn your worries of things you cannot control over to God and take a deep breath. Then go take care of YOU! HUGS.

My heart goes out to you. As a parent, I do not understand the struggles you are going through but as a speech therapist who work with children such as yours, I do understand your struggles.
Many have mentioned the pictures system. I see that you have been working on signs but he is not picking them up. I would talk to his speech therapist about starting a picture exchange system or PECS to see if you can get some communication going to help lower his frustrations as well as yours. I have found this system to be great for the right children-at least until he is able to verbally communicate or sign better. Hang in there-it does take time (something you have probably heard over and over but it doesn't make it any easier). Be strong with him! Where he has had global delays-you may see him picking up communication better approximately the time it takes him to do other things. Good luck and I will be praying for you!

A., you can do it. You are taking care of such an important little child of God and it can be frustrating even in the healthiest kids. You sound like a really dedicated mom and your little boy is lucky to have you. YOU CAN DO IT!
Pray alot, and know that it will get better. Lots and lots of hugs.

A.,
if you are in Colorado please join our statewide parent support group at www.p2p-co.org . We have an active listserv of parents of kids with special needs and you'll find lots of families with kids like yours. It's amazing how much easier it is to talk to families who have been there, done that, and who can share resources, experiences and tell you the best places to get what you need.

take care, S.

Hi,
Are you in a support group,or a MOMS or MOPS group to get "me" time. The specialists your are recieving services from should be able ot set you up with ohters in your same boat so you do not have to suffer alone. Connecting with other moms helps so much. My daughter recieves servces from DDRC (developmental disabities resource center) they are AMAZING! If nothing else cal as=nd ask for referal of support groups! Best wishes!
C.

A. you poor thing, you need a good cry and a great big nap.
SWeetie have you ever tried signing with him? it may seem impossible but it may help to try, maybe try things like (cup, water, food, hungry, ouch, angry etc. the very basics). That baby has special gifts from a Father in Heaven who loves him and I think how exciting it would be, to be the one chosen to help the child reach for and accomplish his purpose, you must be very special to have been granted such a gift as that.
what an adventure and a trial you have laid before you.you will reach your potential in some areas as you help him. How exciting. BLessed is the name of MOTHER.

A., Sometimes the world of mommies as we know it comes crashing down on us and we need a little help ourselves. Know that YOU ARE NOT ALONE! You are doing all you are physically capable of right now for your little one, it's ok to ask for yourself. It sounds like you are an awesome mommy and your little boy will improve with time and love. Don't hesitate to share your feelings with your husband, those men of ours can surprise us with their tenderness at times. Also, Read Holly B. response again, I've found she is full of much wisdom and care. There is a loving Father of us all who loves you soooo much and is hurting with you, but is also knowing that you are the best person to be taking care of this little boy. I've spent many many hours on my own knees asking for comfort and strength to go on, and it will come. Best wishes to you sweetie, you can do it!

Oh Goodness, rough patches always seem like they never end. Keep your head up high and try to "escape" in a bath or just heating a towel and placing it over your shoulders to relax when little one is napping (if that's an option right now). Been there done that with dehydration scares. What also works for that is ice chips (not sure if you've tried yet) and regular ice pops (even a half of one is good). My middle girl is a daddy's girl but when she is sick she only wants me and with our third here now that is difficult so I know what you are going through. There is light at the end of the tunnel and you may already be through the hardest part of everything. If you do get some quiet time when he is asleep try to make some healthy snacks for yourself and store them so you can get a quick bite in if you need it.. Hang in there, we are all routing for you.

Hi A.,
My son is behind on his speech too. We have him meet with a therapist once a week and it is helping, but I know what you mean about the language barrier and frustration. I am sure you have heard this, but boys do take longer to talk than girls, so I try not to compare my son to other kids we know his age, who all happen to be girls! THey are all starting to make two word sentances, and we are nowhere near that! We did signs, too, and they take a while to catch on. Maybe your son just needs more time. Have you tried doing action cards with him? I am not implying that he is autistic, but I have a friend who works with autistic kids, and they use cards with pictures on them. THe kids pick the card that represents what they want to do--eat, do blocks, go outside, whatever. That way he can "tell" you what he wants/ needs without words.
As far as sickness goes, have you tried popsicles for the dehydration? You can either get him the storebought kind or make some from juice, or try making them from pedialyte. Does he like smoothies? If he is willing to drink, you can make him a calorie and protein filled smoothie with whole milk yogurt and juice and fruit ( I mix orange juice, vanilla whole milk yogurt, a banana and froz. stawberries in the blender). If you don't feel like getting out the blender, you can make a "fake" smoothie--I do this all the time for my kids: Mix whole milk vanilla yogurt and juice (orange or apple works best)in a sippy cup--you can mix it with a spoon, just make sure the consistency isn't too thick or it is hard to suck out of the sippy cup. Good luck, things will get better! You sound like a great mom and I know you are doing the best for your son. :)