Preparing for baby with special needs

[Anonymous]

Was told there is a likelihood my baby (due in 3 months) could have special needs related to mobility (arms/legs) amd/or a genetic condition ( related to arms/legs). It's still too early for an exact diagnosis.

Those who knew or discovered they had a special needs child in infancy, what are things you did to prepare? Specialists to contact? Rethink daycare for a nanny? Etc.

I'm at a loss; I just didn't expect this. I will love this baby regardless and want to give it the best chance possible from day 1.

[Anonymous]

OP, I just want to say I am thinking of you and wishing you all the best. I think right now I would ask for the high risk doctors who are evaluating you, or the neonatologists, to sit down with you and talk about what you may expect. I would want as much information as possible. I would also make sure you do as much as you can to set up a great support system after the baby comes. I know that for me, I would start talking to a therapist now to prepare. I would also be prepared to visit one after the birth. I would tell as many friends as I felt comfortable telling to avoid issues after, and to make sure I had as many people supporting me as possible. But this is way personal, and people have totally different ways of responding. You may want to retreat for a bit. Do you have family support? And what about work? I would think a family member or a nanny would be better with a special needs infant but I am not sure. We had a nanny for our premature child because he was medically delicate. I am thinking of you, again, OP.

[Anonymous]

Contact Early Intervention now and get on their list for physical therapy, occupational therapy, and any other therapy they offer. I was in your boat and initially they offered me Cognitive Therapy but I poo-poo'ed that because DD was "cognitively normal" but she loved cognitive therapy which was basically playing a bunch of fun games and reading at a year. So do everything they offer, regardless of whether you feel your child "needs" it.

Don't get hung up on labels. If the Down Syndrome Support Group or the Angelman Syndrome Support group has a great leader or great moms, join that group right away. Especially if your tot has a rare syndrome.

Look for the best nanny, not necessarily a special needs nanny.

All the best and welcome to the SN forum no matter your journey.

[Anonymous]

I would get on the waitlist for Dr. Rosenbaum of CNMC (genetics) now because at least when we first scheduled it was quite a few months in advance. He's very knowledgeable and dedicated to his patients and he has a pleasant bedside manner. I once emailed him with a question and was stunned at how quickly he got back to me on a weekend! It was a situation that needed a quick response, but I only hoped to hear by the end of the following week. When he makes referrals, he only gives the names of people he knows are good rather than referring to friends or just anyone regardless of how good they are.

[Anonymous]

And, yes, I might think about getting a nanny, a great nanny, versus group care. Obviously we don't know your child's special needs, but it can be hard for teachers or a single fmaily childcare provider to care for one child who needs very different things when they have a group of children. Your nanny will be able to tailor activities, etc. and you can still use a preschool program a few mornings/week if that works when your child is 3 years old, with the nanny offering before/after preschool care.

That being said, we had a child who wore a harness on her hips for about 5 months at our childcare center and our teachers managed that very well. But that was the child's 2nd child, they trusted our teachers, and I knew which classroom to place the child in based on my teachers' skill set and ability to work with challenges and make it work. But you wont' know that center.... harder to choose.

Unless you have an older child who is at a childcare program you love, adore, trust, and then it would be a different decision because you can just chat with the director and the teachers and see what can be worked out.

[Anonymous]

Hugs, OP. I don't necessarily think that a nanny would be any better than a daycare. It really depends on the training and attentiveness of the caregiver SN or no.

You have a heads up which is a mixed blessing. You can prepare, but try not to let this overshadow everything. Easier said than done.

(Also just as aside, I recently saw a baby at the playground who had under developed limbs. But that didn't deter her one bit. She was scooting around having fun. And that's the thing, kids are very resilient and just know how to be kids.)

[Anonymous]

Yes - Early Intervention/Infants and Toddlers. Call now and they can come out right after your baby is born. They will come to your home and do a full eval. Many of them do infant massage in addition to therapy services, so I would ask about that.

[Anonymous]

I think with you mindset you'll do find. My main advice is don't get into a frenzy (not that you are now -- just don't start). Take it one day at a time. I agree with the comment that kids with physical disabilities are extremely resilient. I see nannies all the time with kids having a physical disability of one sort or another and it is -- like -- nothing.

There is exploding development in technology to aid the physically disabled. We cannot envision the amazing aids that will be available to your older child.

[Anonymous]

I think with you mindset you'll do find. My main advice is don't get into a frenzy (not that you are now -- just don't start). Take it one day at a time. I agree with the comment that kids with physical disabilities are extremely resilient. I see nannies all the time with kids having a physical disability of one sort or another and it is -- like -- nothing.

There is exploding development in technology to aid the physically disabled. We cannot envision the amazing aids that will be available to your older child.

I'll second this. My niece was born with a limb deformity, heart condition, and some other issues. She's in a prestigious high school now of a full scholarship, is a star soccer player, and one of the nicest kids you'll ever meet. The first year, especially, was hard for my sister. There was lots of therapy, some surgeries, and some growth issues. By a year though, she was thriving, and it's all water under the bridge now. Good luck.

[Anonymous]

My brother has autism and is very low functioning; my mom worked in post partum recovery until she retired. She'd often get asked to talk to new moms who had received a surprise diagnosis at birth.

One piece of her advice really stuck with me and I'll pass it along to you:

Enjoy your baby. There are (potentially) going to be a lot of things about your baby that are different than other babies - but there are also a LOT of things that are the same. Don't spend so much of your time concentrating on the "different" parts that you miss the "baby" parts. Snuggle your baby, dress him/her in cute/frilly clothes as appropriate, basically do as many of the "regular baby" things as you can.

Easier said than done, I know, but good advice nonetheless.

[Anonymous]

Start understanding Medicaid waivers in your state as well. Here's a good place to start: http://www.kidswaivers.org/, but there should be a social worker at your hospital who can help you out.

We had good luck finding a nanny on care.com. We were able to teach her how to care for our child (who is severely disabled) and it was fine. An Easter Seals Education Center might be able to help as well: http://www.easterseals.com/DCMDVA/our-programs/childrens-services/

Good luck! The initial shock is tough and it will take you a while to adjust, but you will find your groove and be awesome, believe it.

[Anonymous]

Anonymous wrote:My brother has autism and is very low functioning; my mom worked in post partum recovery until she retired. She'd often get asked to talk to new moms who had received a surprise diagnosis at birth.

One piece of her advice really stuck with me and I'll pass it along to you:

Enjoy your baby. There are (potentially) going to be a lot of things about your baby that are different than other babies - but there are also a LOT of things that are the same. Don't spend so much of your time concentrating on the "different" parts that you miss the "baby" parts. Snuggle your baby, dress him/her in cute/frilly clothes as appropriate, basically do as many of the "regular baby" things as you can.

Easier said than done, I know, but good advice nonetheless.

+100! Great advice.

Also love Dr. Rosenbaum in Genetics. He is very sharp and also very common sense. A nice combination.

[Anonymous]

Seconding Dr. Rosenbaum. He is wonderful. And Easter Seals Daycare in the District. They will know what to do and have therapists on staff. Also seconding the waiver. If you live in the District, great news- there is no waitlist and the coverage is incredible! If you give birth out in VA or MD and your baby has an extended NICU stay they can't cover treatment until the baby arrives in the District.

Also seconding enjoy your baby. It was the best advice I got and I took it to heart. I grieved of course but I'm so glad I enjoyed it too.

Talking to most OBs and geneticists (except Rosenbaum) probably won't give you the most balanced info. They tend to paint the worst case scenario and scare the crap out of new parents. Find a support board on babycenter.com that matches what your child might have. They will be there for you and can give you a more realistic picture.

Also, it hurts now but don't assume this will wreck your life. It didn't wreck mine and I look at people like they have two heads when they think my life is so difficult. Yes it is more work but worth it to me.

[Anonymous]

Oh, and Dr Maria Marquez at Georgetown CYAS is a pediatrician passionate about special needs kids. She will take care of your baby.

[Anonymous]

We have also had a great experience with Dr Lanpher in Genetics at Children's. In my experience, there are few specialists over there that you can go wrong with.

PP's mom had really good advice. None of us know what curves parenthood will throw us, but we love the babies we get, because of and regardless of who they are. They are special and unique and no matter what, they will always be our babies. Sometimes you need to remember that when you're rushing to another therapy or calling another specialist or worrying because you've never done this before and you don't know what is "normal." Or at least I need to rember it.