AP and special needs babies

[leelee]

My ten m/o son has been sick for the past 4 months. He spent 5 1/2 weeks in the hospital paralized and is slowly regaining control of his little body. Since he was paralized he is week and not able to crawl, pull himself up, ect. He is expected to fully recover without long term effects of this illness. We go to PT< OT weekly.

I am getting scolded frequently by almost everyone (not medical persons) for not letting he cry it out. I am APing and everyone thinks if I didnt help him he would do it himself. If he gets frustrated and cries will that help him learn?!? They also think I am over loving him because of his illness.

Has anyone felt like this? How should I deflect the advise? Am I helping him too much? What do normal parents do with normally developing babies?

SAHM for Robbie 9/10/02, :bf

[The Lucky One]

How cruel people can be! I'm sorry you have been given such a hard time for treating your sweet ds the way he should be treated. Why in the freaking world would someone suggest you let a paralyzed baby cry it out? That's the dumbest thing I've ever heard.

My darling ds, 18 months, has a speech delay and only can say three words. I've had people tell me I made him that way by catering to his every need and that I need to make him ask for things before giving him what he wants. I cannot shout it loud enough that HE CANNOT ASK FOR THINGS because he doesn't know how to do that yet and when he does he will. Letting a child scream and cry in frustration will not teach them anything other than that no one cares enough to help them out. What a sad lesson to learn at a tender age!

You cannot 'over love' a child. Let me say it again, you cannot over love a child. That is absurd! I'm sure you are just grateful for your child's precious life. I do think it is only natural for the parent of a sick child to be very doting and protective. There is nothing wrong with that--especially at age 10 months!

You are not helping him too much! Are your PT's and OT's giving your guidelines of things you can do to build his strength? I'd just follow their advice.

What to say to those that are giving advice (if you can even call it that)? Well, I know how I'd feel in that situation and I would have a hard time being very nice.

You're doing a great job, mama! Keep up the good work!

lisa

[Piglet68]

I can't believe that health care professionals who work regularly with sick children would still hold to that ridiculous attitude. What child needs endless loving more than a sick child? It sickens me to think that these "professionals" are dishing out this advice to parents of babies who already need more loving, more holding, more support and more attention from the get-go.

Don't you for one second doubt yourself and your inner wisdom, mama!!!!

[leelee]

Thanks for the support. I get so angry sometimes I could scream. I have felt overwhelmed by advise against APing my sick baby. I am pleased to see a SN support group. I have felt pretty alone during this illness. My DH is very supportive and so is my mother. It is nice to hear encouraging words from other moms.

I know in my heart I am giving my ds what he needs (love). I also insisted on CS during the hospitalization, practiced kangaroo care, EBM for his NJ feeding and never left him alone. It seems as some people dont understand what a privalige and honor it is to be a parent.

[joesmom]

they would never say that if it was your parent or spouse & not your child. if you would AP a child without developmental delays, then OF COURSE you should AP your son, he needs your unconditional love & acceptance.

the people who question you or say otherwise should just MTOB! & be thankful that your son has you for a mommy & not some masochist who would make him CIO to "teach" him something. :

keep up the great job!

[Piglet68]

Originally posted by joesmom
they would never say that if it was your parent or spouse & not your child.

You know, that is so true. Next time someone tells you that you shouldn't hold your sick child so much, ask them if they'd tell you not to hold your sick husband so much.

Good grief!!!!

[Momma Aimee]

Hold your baby, love him. That is what he totally needs. And I think YOU need it too. All babies need contact (there is more than enough research ont hat); and your's needs it more. He needs his security redeveloped. My first godkid was in NICU for 6 weeks. We held him constantly when we got him home. He is not totally happy and secure and I doubt he'll ever even understand what the rest of us went though -- as it should be.

but....................consider this too....................I think some fustration is necessary; there is no growth or development with out challange...........I think you should help him embrace the fustration as a step to growth. Help him through it; expereince it with him.

Even "normal" babies and kids get fustrated learning new skills; and I still at 31 get fustrated trying to learn new physical skills.

Babies cry when fustrated.

I think the baby has to be allowed to expereince fustrations; if not given the oppetunity to "pratice" and to "try" the skills will never be learned and advancements made.

I think that is it not CIO, nor is it bad, to allow baby to grow and develope in a normal fasion. Again; help him, support him, and expereince it with him; but do not teach him to be afraid of the "pain" of growth.

Consider -- if the second the baby is flustered and fusses you "save" him....well he'll never learn the skill that is fustrateing him.

Love him, support him, and enoucorage him....be there with him......but I think you gotta let him gorw through fustration.

I think it sounds like you are going great.

Come here for support anytime. Let us know how the baby grows.

Aimee

[heartmama]

leelee, leelee, leeleee, I am so sorry I didn't see your post sooner!!!

But you got great advice, so I don't feel so guilty.

I am bit by bit working on a booklet for ap parents of special needs children. Your post just lit a fire under me to get cracking.

All I can say is that you WILL NOT REGRET--repeat--WILL NOT REGRET the ap approach with your son.

It will heal you BOTH, in ways you won't always see for months and years.

You must take refuge in the peace you have when holding your son. It is such solace when you are surrounded by an unsupportive environment. And there is precious little that is less ap than a hospital.

I often think that babies who spend such long periods of time after birth in ICU need to return to a womb like environment and re establish themselves with the world. I know that ds just wanted to escape it all into the sling. He wanted to hunker down and shut it all out. It was a long time before he did little more than sit in his perch in the sling and observe the outside world. He had good reason once he was out of ICU to proceed with great caution. He did not want to take life by the horns like a regular baby, and throw himself joyfully into overcoming challenges. He lived in the sling for almost a year, and it bonded him very well all the while letting him feel he was safe and able to just retreat until he was ready to try this whole life business again.

When he did finally emerge it was with a ferocity that you would NOT BELIEVE. He didn't talk, he talked non stop. He didn't explore, he dissected anything that interested him. If he hated it he threw it down, if he loved it he wouldn't let it go. He had this tremendous personality that just exploded onto the scene.

Now he is 7 and going on 30 *LOL*. He is very attached, and very advanced verbally and I think, pretty darn smart!

You are a great mom, and you are doing the best possible thing you can, which is to keep your baby securely attached during this period.
The biggest emotional risk of prolonged ICU with babies is the lack of normal bonding. Bonding problems can persist long after the physical reason for the hospitalization has been resolved. They are complicated, and so difficult to resolve, and yet so preventable with the right support for the family.

Do everything you can to feel connected and bonded with your baby, and you are on the surest path to healing you both emotionally. You will never look back and say 'I wish I had held him less'. You will be so deeply, truly proud of yourself for following your heart.

Please pm me ANYTIME.

[joesmom]

heartmama:

love, jenny

[Momma Aimee]

leelee

how about an update.

How is your baby boy doing?

AND

how are YOU doing???

Aimee

[mlia]

Well #1 he's a baby and has gone through medical trauma! People need to give you and the kiddo a break. Keep following your heart! Most people that are complaining probably don't understand AP anyway. To me it's even more important to practice AP with a special needs child.

[leelee]

Thanks heartmama!! You said exactly what I needed to hear. Its true, the hospital is so far from AP. A book on APing SN babies is far overdue. I sure could of used a little backing during our hospitalization.

Robbie is doing very well. He is thinking about crawling now and is starting to use a pincher grasp. He is eating by mouth full time now and is bfing well. The doctors told me he would never bf again - thank goodness for my supportive LLL, MARGARET! His prognosis is to have therapy for another year.(OT/PT) Nobody can predict his recovery. Most babies, with his illness are bf until the get sick and then switch to formula during the hospital stay. The research doctor could not tell me about any other moms who bf thru the illness. Robbie has had ONLY breast milk and I feel that this gives him a leg up on his recovery. But I could go on and on about that.

At our last PT visit, the therapist commented that you would never guess how sick his was because he is so secure in his relationship with me . It was soooo good to hear that.

Thanks for the support!

[LaLaLuna]

First of all, Lisa, I am in total awe at your tenacity and fierce devotion. BRAVO! Man, talk about trial by ordeal. Most of us darn near collapse at just the NORMAL newborn stuff!

Second; you said it wasn't the medical personnel who was giving you grief which leads me to believe it's probably well-meaning but ignorant family members. I'd take what the PT told you last time about your baby making such good progress (sorry for the paraphrase) and use that as the stick to beat the family (or whoever) off with. "Sorry- my DOCTOR told me to do it this way!" I bet if you just onleash the mighty word of the dr. your critics will dry up. :LOL (this is something I once read in the Dr. Sears book. He said to blame it on the dr.- he was very careful not to say WHICH dr!)

[annakiss]

I just finished reading Immaculate Deception II and there's this big section where she talks about birth trauma and newborn trauma. Research has shown that preemies allowed contact with their mothers and/or who are breastfed are discharged from the hospital and have fewer infections than those who don't. A baby who is paralyzed has most certainly experienced trauma and needs extra care and attention. I don't see how anyone can expect you to not treat your child with love and attention to the point of overflowing...especially when that child is special needs. It wil help your son heal from his experience.

Reading the book though, I began to wonder why anyone would ever think that we (meaning ALL mothers) should be anything but attached parents. It's what is biologically called for. In my own experience, once I had my baby, it was instinct to hold him when he cried and at every other moment of the day, for that matter. I found, and still find, the idea of putting him in a bed in a room by himself ridiculous and not a little bit inhumane. AP is what comes naturally if you let it (excusing the rare incidence of emotional disturbances in the mother).

I know that my son has been exposed to potentially traumatic experiences as a newborn. He was forced to be separated for me then under bright lights handled by strangers who gassed him in preparation for his surgeries, and he had to undergo prodding by nurses while in PEDs. He also once had to be stuck four seperate times in four separate parts of his body to get an IV in when he was dehydrated during one of his hospital stays. I only hope that it is our smooth, AP style that helps him to heal from this. I can only assume that he has as he has no fear of the hospital or of nurses or doctors and is in general a quite happy baby (though of course, at the moment he's getting quite irritated with me being at the computer instead of giving him his morning peach).

At any rate, I think that your parenting style is absolutely essential for your special needs son and for all babies, everywhere. I think back to our hospital stays and remember seeing babies in rooms by themselves for days with no one around at all and feel that a great injustice is done to infants and children (and mothers) in our society. The saddest part may be though that as these children grow, they carry on a tradition of detachment to their children.

[MommyS]

Good for you!

I've been reading through your thread and I am so proud of you for sticking your ground! A book that helped me when my little one was in the NICU was Kangaroo Care. The book talks about how important it is to hold your baby skin to skin so they can feel your body heat and hear your heart. I think this is especially important for special needs and sick babies. Anyone who tells you to let them cry it out, especially when a baby has been sick, is insensitive and cruel!