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Raising twins with developmental delays

Shannon*, a local mom of twins, has had an uphill battle from the beginning. She and her husband were already raising two other children in addition to their twin girls (Becca and Ann), who are now three. Shannon’s pregnancy was complicated, emotionally and physically, by Velamentous Cord Insertion (you may have to scroll down to find the information about this specific disorder, but the site is too useful to pass up) and later by twin-to-twin transfusion syndrome. At one point, doctors even told her that Ann would most likely be stillborn. Shannon says, though, "I knew in my heart that she would be fine.”


Fortunately, the doctors were wrong, and both girls were delivered safely. However, as happens so often with multiples, especially those born prematurely, there were challenges still ahead. Both girls have needed services, although Ann has required more than her sister.


There were helmets for plagiocephaly, physical therapy for motor skills, occupational therapy for feeding issues, treatments for sensory processing problems, and speech therapy for verbal apraxia. Then there were relational challenges for Shannon to deal with, as well.


For example, Becca started talking first – almost a full year before Ann. As a result, Becca would often speak on Ann’s behalf, or interpret for her if adults couldn’t understand what Ann was saying. Shannon wanted to encourage this helpfulness without discouraging Ann from learning to speak for herself, so she signed the girls up for separate preschool classes.


Both girls, but Ann especially, have really bloomed in the last year: all the work and worry through all the various treatments have finally started to show some real results. It’s a huge payoff to a mom who has seen her family through so much.


Shannon says the following organizations were hugely beneficial to her family, and she recommends them to anyone who needs similar resources.


Children’s Hospitals: Follow-up visits for NICU patients can help identify potential developmental issues, and help parents find providers for treatment.


Kenny Kids (Sister Kenny Institute): Physical and occupational therapies.


• A good pediatrician: Find somebody you trust, who is willing to work with you and your children.


ECSE: Early Childhood Special Education is part of the ECFE program. Like ECFE, check with your local school district for class offerings. Shannon says their experience with ECSE gave her support and ideas for coping with the challenges of parenting kids with special needs, as well as giving her kids a great education.


*All names have been changed to protect the family’s privacy.

Comments

  • Andrea O. 4 years ago

    I have 19 month old twin girls and they are having developmental delays in language and fine motor skills. The Occupational therapist told me today that one of my girls, Caroline, has low registration of sensory experiences. Were either one of your girls diagnosed with low registration, and if so, what does this mean? Is she Autistic?

  • Julie (Multiples Examiner) 4 years ago

    @Andrea - I'm definitely not an expert. I'd ask your OT or pediatrician. Go prepared with questions -- do they want to do more tests? do they already have a diagnosis? if so, what treatments are they recommending?

    I did a couple of Google searches, and there's a lot of great info out there. There are also some excellent blogs by moms with kids on the "spectrum." Amalah (amalah.com) has a son with sensory processing disorder, and Stimey (stimeyland.com) has a son with autism. Their posts might give you some ideas about better questions to ask.

    I'll also check with "Shannon" to see if she has some additional suggestions for you.

    Hang in there!

  • Julie (Multiples Examiner) 4 years ago

    Here are some additional resources that might be useful (from local moms who've been where you are) -- I also posted something to my Facebook page, so you can check there to see if more people respond. There's a link at the right for Facebook.

    out-of-sync-child.com - a book about Sensory Processing Disorder
    metrotherapyscc.com - a recommended local OT/ST clinic

  • Julie (Multiples Examiner) 4 years ago

    From Shannon:
    Ann had sensory processing issues. We had an excellent OT at Kenny Kids that worked with her. We did the Sensory Diet: brushing her arms and legs with a brush similer to the type surgeons use to scrub, doing joint compressions, things like that. I think Ann had the opposite of this little girl. She had a hard time touching things, she couldn't stand grass, she wouldn't walk from one surface to another-like from tile to carpet. She had a hard time eating because of the texture of certain foods. She would choke and gag on it, even just holding a piece of a banana in her hand would make her gag! She hated most noises. If anyone talked to her with a deep voice, she freaked out. vaccuum cleaner, running water, door bell, everything but music!
    The Out of Sync Child may be helpful to her. I did a little research and there is a website, spdfoundation.net, that might be a good place to find info.
    (cont in next comment)

  • Julie (Multiples Examiner) 4 years ago

    Also, a book called The Sensory Processing Disorder Answer Book. I have not read that one but it may have some answers for her.

    I found that low registration is often found with children with autism and other disorders, but it doesn't mean they are autistic. I would maybe talk to her pediatrition about her concerns. It might put her mind at ease

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