Twins + special needs child? Edited. - Mothering Forums
Parenting Multiples > Twins + special needs child? Edited.
jackson's mama's Avatar jackson's mama 03:07 AM 09-15-2006
Original post (roughly)...

I'm scared, mamas, and I need some encouragement.

I have a son with physical disabilities - he's in a wheelchair, tube fed, medically fragile, and basically requires total care. He's an absolute joy, but is also a lot of work.

DH and I decided that now would be a good time to bring another child into our family. We found out this week that we're not only getting one addition, but two... it's TWINS! After the initial shock, I've been so nervous and apprehensive about how I'm going to manage taking care of newborn twins and also giving DS the care he needs. I'm really scared .

(Now here's where I got pouty...)

I'm sad. I posted this thread hoping for a little reassurance, and I got none. Over 30 people have viewed it and no one could post with a little ecouragement, even if you don't have experience in what I'm talking about? Guess I'll be getting my support elsewhere .

cjcolorado's Avatar cjcolorado 02:11 PM 09-16-2006
D'Anne, please don't take it that way...
I read it, started a reply, then was called away by a shrieking newborn--that's the way it is all too often. I wanted to say first of all that your son is beautiful, and does have an amazing smile. Were I in your shoes, I would definitely use up as many of those nursing hours as you can get and get as much assistance from family or friends as possible--especially the first month or two--even if it comes to hiring a nanny or part-time helper.
I will write more later--both boys are again awake for another meal.
Take care. I was saying...the most helpful things I found in the first few weeks were people to help cook and help out with my daughter as she ever-so-gradually adjusted to life with two babies pulling away mommy and daddy all the time. Just before I delivered, I got in touch with a local multiples group (can be a great resource of info and tips!), all of whom have been phenomenal and probably kept us in dinners for a solid two weeks! Now, help with my daughter is always nice, but having an extra set of hands to hold, carry and love on a baby now and again is divine--while it's possible to sling or wrap both at once, it's not always practical, nor do they always like it. I don't know what to suggest about how to get all three around at the same time--again, perhaps someone in your local multiples group has BTDT and has suggestions for you. You may want to consider finding extra help, too, for your last trimester so that you can be sure to get enough rest, food and water to bake those babies as long as possible.
Finally, I don't know how many on this board would agree, but it has been a life-saver, after the boys were about 6 weeks old or so, to get them on a routine of eat-play-sleep at an interval of about 3 hours, more or less, depending on when they give hunger cues, that has helped us push their long stretch of sleep into the nighttime so that now they routinely sleep from at least 10:00 at night until 6:30. Sleep keeps me sane. I exclusively pump for them, so I think it's a bit easier with a bottle to get them to eat more at feedings than if they were nursing--but that isn't to say that nursing makes a routine impossible, either.
Those are all the things that come to mind! Best wishes for an uneventful and happy pregnancy!
bri276's Avatar bri276 02:22 PM 09-16-2006
I have a special needs child too mama. I don't know what your original post was but I hope everything works out wonderfully for you and your family. please join us in the special needs forum any time.
LoisLane's Avatar LoisLane 02:56 PM 09-16-2006
Congrats on the news of your twins, and I am sorry I did not see the original post. Life with multiples brings many changes -- and doing things in a timely manner (returning phone calls, sending birthday cards, helping friends in need) is one of many things that often slips. Not that that's an excuse, just a reality.

Often, I read here while nursing and want to reply but when I have hands free, my 4 year old calls to help him with a project, or the babes are making a huge mess (as they are at the moment), or dinner is burning (as it did last night when I made the mistake of leaving something cooking to go to the bathroom, then stopped to nurse a babe who had bonked her head while playing, and suffered through blackened pork chops as a result.)

Anyway -- I wish I had seen your original post, and I am so excited that you are expecting twins, and I would love to offer advise and encouragement -- it just might not be in the same timeframe I would have before twins.

Take care and good luck with your babes.
mama_at_home's Avatar mama_at_home 02:58 PM 09-16-2006
I didn't see your post, either. Please don't leave. As mamas of twins sometimes we barely have enough time to read a post before we have to get offline. Or maybe we want to help but don't know what to say, kwim? Anyway, if no one answered your post I am sure it is not because we don't care.
midwestmom's Avatar midwestmom 03:08 PM 09-16-2006
Originally Posted by jackson's mama
I'm sad. I posted this thread hoping for a little reassurance, and I got none. Over 30 people have viewed it and no one could post with a little ecouragement, even if you don't have experience in what I'm talking about? Guess I'll be getting my support elsewhere .
Hey-no fair, mama. You just posted this late last night and I am just seeing it for the first time. The 30 views were probably mostly from mamas without twins or a special needs child b/c I have found that people are fascinated with multiples and tend to lurk here. Most of us would love to give some support if you gave us a chance!
royaloakmi's Avatar royaloakmi 04:31 PM 09-16-2006
I didn't see your original post either, but I know that sometimes I have to step away from posts (especially really emotional ones) and think about it before I can compose a thoughtful response later.

Hang in there
amnesiac's Avatar amnesiac 05:13 PM 09-16-2006
I only get a chance to pop over here once in a while so I've just seen your thread today. I agree with midwestmom- lots of curious nonMOMs who like to lurk so I bet that's what a lot of those views were. Anyhow, sorry you're having a rough time. I wish I could say more but I didn't see your original message so I'll check back again later in case you update.
twinvillageiowa's Avatar twinvillageiowa 03:09 AM 09-17-2006
I didn't see your original post either (due to screaming twins) but I would say that if you go to Yahoo and set up the calendar to say NEED: Dinner or NEED: Baby help on certain days and times, then put people in your address book and let them know that where is says NEED, they should change it to their name, they will be able to help you and you will know when help is available. I know this sounds sort of confusing, sorry about that. If you PM me I can explain it better. We did this for our twins and it really helped a ton.
Tassy's Avatar Tassy 04:56 AM 09-17-2006
Sorry, I did not see your original post either. I do not have a special needs child but have a lot of experience with them professionally. If you would like to repost, I would love to offer support.

HUGS either way.....
Mama_in_Maine's Avatar Mama_in_Maine 11:28 AM 09-17-2006
This is the first time I've seen this thread too..I hope you havent left this site..I have a special needs 3 year old (she has Autism) and twin 4 month old boys..please feel free to pm me anytime!!
jackson's mama's Avatar jackson's mama 04:44 PM 09-17-2006
Forgive my over-emotional edit mamas - pregnancy hormones are running wild! I was reacting mostly to a similar thread that had received replies while mine had not... coupled with fear and apprehension about where my life is headed, I lashed out. I apologize.

Thanks for those who left helpful suggestions and hugs .
Paige, CPM's Avatar Paige, CPM 10:59 PM 09-17-2006
Dear Jacksons Mama,

I looked at your website about Jackson - through the link in your signature...(what a beautiful boy!) inspired me take action to do something I have always wanted to do...

I clicked your link to the National Marrow Donation Program and sent an email to my local site about how to register my husband and myself.

We are also having a baby in January and so I sent an email to Cryo Intl (there are no participating hospitals in MA!!) about cord blood donation.

If all goes smoothly with the donation I can ask my clients to consider this as well...and have other MA midwives and their clients do it...

Thank you for sharing your story through the website, many blessings to you!

twinvillageiowa's Avatar twinvillageiowa 01:41 AM 09-18-2006
I also donated my twins cord blood when they were born. We were at a leading hospital for genetic research, so it should be put to good use.
Finch's Avatar Finch 12:31 AM 09-19-2006
D'Anne, I think of you often, actually. I live in Durham, so whenever the subject of CCBB comes up I think of Jackson and your family and hope you are all doing well.

That being said, I have no experience with twins and a sn kiddo, so I can't offer advice. I can only say that you can do this, you may be pleasantly surprised at the (good) changes siblings can bring for a sn child. I have heard from countless sn moms that siblings helped their sn child blossom in ways they never imagined.

P.S., Jackson looks so cute for his first day of school!!
jackson's mama's Avatar jackson's mama 02:46 AM 09-19-2006
Thank you all so much . Paige, it means so much to me that Jackson's story has inspired you to sign up as a donor and investigate donating your baby's cord blood. I have a few friends who have donated through Cryo Intl and found it easy - the hospital staff was cooperative and everything went smoothly. It's too bad there aren't more cord blood banks around, hopefully that will change in the near future.

Finch, nice to "talk" to you again . I have heard similar stories about the benefits of siblings for sn kids - I'm hopeful this will be the case for our family.

I'm feeling better about things at the moment. I know Jackson will love his sisters so much, I can just imagine him cuddling them on his lap and them all giggling together. They will have a lot of fun together, that's for sure.

I was crying in the car about it yesterday, and I had a thought that helped me immensely... and that is that no matter what happens, I will give my kids all the love I possibly can. As hard as it will be, there will always be lots of love .

(P.S. I edited my original post - again! - to reflect what it was initially about)
Mamushka's Avatar Mamushka 04:14 AM 09-19-2006
I’m very sorry your original post did not get replied to. That would have upset me too. I have to tell you that after reading your post here I looked at Jackson’s website, and I’ll admit that I’m not great with encouragement, but your story truly touched me. Your son is so beautiful and his smiles are a testament to your love and strength as parents. I’ll tell you what my mother told me when I got pouty on her about being pregnant with twins and having a toddler: You’ll make it work because you have to and you’ll find people and systems that will help make it easier. I know your particular circumstances make your situation different from mine but I believe you will make it work. Please give us multiples gals another try and keep us posted. You really must be an extraordinary and exceptional woman to have been chosen to raise such extraordinary children. I wish you the best.
USAmma's Avatar USAmma 04:19 AM 09-19-2006
I just saw your post. Congrats!!!!! Wow that's really neat! Double blessed.

My situation is totally different but both of my kids have or had their issues. I had my SID 3yo daughter and then along came my reflux/tube-fed daughter. We managed. It was a big adjustment but we surived to tell about it.
amnesiac's Avatar amnesiac 10:49 AM 09-20-2006
Originally Posted by twinvillageiowa View Post
I didn't see your original post either (due to screaming twins) but I would say that if you go to Yahoo and set up the calendar to say NEED: Dinner or NEED: Baby help on certain days and times, then put people in your address book and let them know that where is says NEED, they should change it to their name, they will be able to help you and you will know when help is available. I know this sounds sort of confusing, sorry about that. If you PM me I can explain it better. We did this for our twins and it really helped a ton.
This is an awesome idea! So is joining a local MOMs group. I'd suggest that you start lining up volunteers & joining by the beginning of your last trimester. Don't be afraid to reach out & ask for help when you need it.

Also, you might check into respite services:
cdahlgrd's Avatar cdahlgrd 02:27 PM 09-20-2006
It will be very hard, I won't lie. Some days you will cry, some days you will yell, throw tantrums, want to run away, etc.

But you will also get the most beautiful moments of your twins laughing at your oldest, holding hands, kissing you/sibling/each other, and so much love!! Some days I cry from how lucky I am!!

You can spend your last weeks of pg, preparing for the babies. Get a BIG support network setup. Multiple groups, church friends, neighbors, family, local nursing students, doulas, LLL, and any other group that you know of and ASK for HELP. You may even need to pay for some help, especially the early weeks while you are recovering and getting nursing established and a routine worked out.

Keep in mind, that it is only a few weeks, no matter what it is. . . a few weeks of nightfeedings, a few weeks of colic, a few weeks of messy first foods, a few weeks of babyhood, etc. In a few weeks, they will be a year. . . then a few more they will be 2, etc. YOU CAN DO ANYTHING FOR A FEW WEEKS!!!
sarahloughmiller's Avatar sarahloughmiller 07:54 PM 09-21-2006
I don't have any suggestions or anything, but wanted to give some 's. It is very overwhelming to think about right now, but it will all be ok in the end and you will be so happy you had your twins
Sierra's Avatar Sierra 06:48 AM 09-22-2006
I am glad you are feeling better. Let me start by saying what a *gorgeous* family you are. I loved your family photo on Jackson's site. I tried to imagine the twins in the photo and just felt so much joy at the thought of it.

I haven't been in your shoes, but thought I'd share anyway because I am going through a situation that I think might bear a similar weight.

I have a ds with special needs. They aren't medical needs, but he is developmentally delayed. He has a number of weekly appoinments with specialists and helping him reach his potential for development truly is a full time job. He is also only 17 months old, still such a baby. We just had a sudden addition to our family: a foster baby. She is under a year old. We very much chose to have her. She is wanted and beautiful and adorable and so much already a blessing in our family. But she too has a lot of needs on top of the usual infant needs right now given the circumstances that brought her into our home. To top it all off I work nights and if I don't get a chance to nap during the day I am good for nobody.

It is hard work, having these two children so close in age who both have some special needs right now, and working nights on top of it all. This morning we didn't get to go to ds' swim class because it was just too much for one mama to handle, and I felt badly but otherwise thought the morning went smoothly. Then by the afternoon I felt the pull very strongly. They *both* had all their needs pop up at the same time again and again, and I just didn't have enough hands and enough lap. I wished so badly that I had hired help just to get me through those moments...just to come in and feed us all or something. I was being one crabby mother and felt bad for ds because he was getting the brunt of my crabbiness. He has a great sense of humor and is very resiliant, so I think he recovered right away, but I can't shake the scary thought of what his early life will be like if I am in that mood all the time. I don't want to be that kind of a mother to my very special little boy, or this little dfd. I know I have to pull it together, but I also know I have to be realistic about the challenges and plan that some days will just be like that.

Everyone keeps telling me we will fall into a routine that works for us, and things will get easier. I am trusting that will happen. It has been less than a week, afterall, and we are still getting to know one another. I have to believe that I can handle what happens in my life. That I am cared for in this universe as well.

The good thing is that you are going to have preparation for this...I know there is no *real* preparation, but this is your time to circle the wagons and put the support systems in place that will get you through. And I really appreciate the post about "just a few weeks." That can be a useful mantra when the going is rough.

I love my family very much just as it is right now. My dfd and ds are soundly sleeping as I take a break from work and respond to your post. They are such gifts. When I went in to check on them right after they fell asleep, I just stood there thinking about how at one point today they held hands on my chest as I held one in one arm and the other in the other arm. They are loved and wanted, and being loved and wanted we can all get through so much together. We'll just hang in there. A few weeks at a time.
jackson's mama's Avatar jackson's mama 02:38 AM 09-24-2006
Thank you all so much for the responses and the hugs. It feels good to get support and encouragement, and it's really helping me feel more confident about the whole thing.

I looked up my local mothers of twins group online and there is one close by - I will get in touch with them in a few months to get that support system going. It looks like they will do meals for new families which is really nice. I have a hard time asking for help so it's going to take some time to work up to that - I guess I should start making my lists now so that I have a few months to target people and work up the courage!

cdahlgrd, I think I will keep the "I can do anything for a few weeks" mantra in my head - that's a good one!

Sierra, what a beautiful post, thank you for sharing a bit of your life with me. You are right about getting the opportunity to prepare. A lot of the things that got me through Jackson's illness will be the same things that will get me through this... it's just hard to know that I'll have to muster that strength and stamina again. BUT, like you said, at least I can prepare for it this time - I didn't get that luxury when Jackson was diagnosed.

Thanks again for the replies and the .
cdahlgrd's Avatar cdahlgrd 04:16 PM 09-24-2006

You need to have a very large, strong system in place as soon as possible!! First, you need people comfortable with your oldest to care for him if needed. Second, you need help incase those babies show up early. Third, you need PRACTICE asking for help because after the babies are here is TOO LATE!!!!!!

Go to LLL meetings, go to the twins meetings, talk to other twin moms, go to pllaygroups with your oldest, invite others over for coffee. I know this is hard, but DO NOT WAIT!!

With twins, when you blink, a week will be gone or a month. You won't mean to, but suddenly you will be a year older and your kids will be walking and your all will be missing out on friends and fun. I know you don't believe me, but a month will pass and you won't even notice. It is too hard trying to make connections with people in the middle of that, so don't wait.