IF ONLY

By Linda Rosenbaum

LindaI’m a wife and mother to our daughter Sarah, and our son Michael, now 26, diagnosed at the age of six with Fetal Alcohol Syndrome.I’m also a writer, and for the past several years have been writing Mothering Michael: A Memoir of Adoption, Revelation and Reckoning. While the book chronicles our unique challenges raising Michael, I believe its themes of love, loss, hope and acceptance are universal to all families.

 

One of my neighbours in the small community where I live recently had twins. One of them was born with Down Syndrome.

After the first few weeks providing casseroles and the requisite good wishes, many members of our community, including myself, let the stay-at-home new mother know that we were available to help, any way we could. Just let us know, we said. Not surprisingly, we never heard from her.

Another neighbour, a specialist in cranial sacral therapy was working with the child with DS in the family home, and became aware of the many difficulties the new mum was having coping with the new twins, their three year old, and all the demanding special tasks, appointments and care needed by her special needs son.

This neighbor called around, inviting a group of us mothers to a meeting. Once there, we all agreed to commit one hour, one day a week, to work with the child with DS. The mom would train us to do a series of physical exercises with him, essential to develop much-need muscle strength. As we would be doing this in the family home, we might also help with the other children, do light household chores, give mom respite –  whatever we or she thinks needed.

The good will and desire of the neighborhood moms at this meeting was palpable. We were thrilled to help and be told what specific tasks would be the most useful. WE thanked the appreciative new mum for this opportunity.

As one of the volunteer mothers said in an email:  “I have to admit that I eagerly signed up because I so would like to help out, but after my brief cuddle with Josh, I have now fallen in love.  I can’t wait to see him again.  And Luke (the twin), what a joyous force he is, toddling around and exploring everything on all 4’s. So wonderful.  And then there’s you…gracious and courageous, and willing to receive. It is a gift for us all.”

This is where my “If Only” comes in.

We adopted our son, our first child, when he was seven days old. Fortunately, I bonded the second I laid eyes on him because he was a difficult baby. I was overwhelmed from Day 1. Both my husband and I were clueless how to bring him comfort during his many crying jags and extended periods of obvious discomfort.  Our pediatrician was as clueless as we were.

I seldom, if ever, reached out for help.

In my gut, I had a feeling there was something actually “wrong” with Michael, but no one, including the doctor had any sense of what that might be. Since there was nothing “wrong,”  my husband and I began to wonder if we were bad parents.  Perhaps he wasn’t sleeping at nights because we weren’t training him properly. Perhaps he cried so much because we met his cries for a bottle or whatever we thought he needed too quickly.  Maybe he needed a stricter hand. Child rearing books and several glaring neighbors seemed to think so. Who knew, maybe they were right.

I was embarrassed by my inability to cope and bring comfort to our much-adored, but difficult child.

Michael was diagnosed with Fetal Alcohol Syndrome when he was six. Though the birth mother had told the adoption counselor that she never drank while pregnant, she had clearly lied. “We see it all the time,” said the Director of the Child Development Clinic at the Hospital for Sick Children, where he was diagnosed.

I couldn’t help think about all this at my recent meeting with the neighborhood mothers.

If only I had reached out to neighbours for help in my own hour of need.  What a smart thing to do. Both my child and I would have been better off for it if I had.

If I had known that there was a reason for Michael’s distress other than “poor parenting”, maybe I would have.

But really, why did I have to know Michael “had” something (with a name) before I was able to reach out.  We mothers can be so hard on ourselves sometimes.

So please, new mothers of adopted children, don’t be afraid to ask for help from friends, family, and neighbors if needed.  They may see it, as one of my neighbours did as “A gift for all.”

 

CALL TO ACTION:
Can you Identify with Linda? Do you have a hard time asking for help?
or is nobody listening when you do? Leave a comment below and let us know.
*Remember you comment helps other caregivers

SIGN UP for my NEWSLETTER and get my FREE E-BOOK!

Making Sense of the Madness: An FASD Survival Guide.

You will learn how to:

  • Increase your FASD understanding and decrease your frustration
  • Sharpen your advocacy skills and strengthen your support network
  • Be a happier, more balanced and confident FASD Caregiver



27 comments

  1. Wow, it is so hard to ask for help and to even know what to ask for; kudos to this amazing group of neighbors and to the one who organized it in the first place.

    • It is really hard to ask for help Dawn, especially when people
      don’t understand the disability.

      I also thought this group is amazing.
      Thanks for your comment.

    • Wow…having walked in your shoes, I totally agree. No-one understands the challenges of a FAS child, not even yourself when you have not been educated. As a parent, I had to do my own research to try and figure it out… and even family and friends turn their back on you as they don’t fully understand what FAS has done to your child’s brain. They seem to think it is bad parenting/not disciplining your child right. They may look “normal” to others, but their brain damage is forever. My daughter is now 21(adopted at 27 days old), but i still struggle with her own siblings who are in their 30s and think i was too easy on her.

  2. This is a lovely article, but I wonder If the reception would have been so warm in the case of Fetal Alcohol. I too adopted a boy, later diagnosed with FAS, and he is now 21. His problems are less cuddly than Down’s (I have a two year old nephew with downs). I love the idea of older moms stepping in to help. We are an untapped resource. But few (including us) know what to do with our homeless, convicted felon son who rejects help. We also have three younger biological sons,all doing well, so our eldest’s problems cannot be blamed on parenting. Genes, Gestational Environment, and family environment-these are what set the foundation for an entire life…no longer nature v nurture!

    • Thanks for the comment Janet. I understand what you’re going through.
      My sister is just like your adopted boy, although she is a little older.

      The reason they reject help is because of their deficits in executive functioning
      and we have pushed independence so they feel like they should be able to do everything
      on their own.

      It really sucks to see them stand on the tracks while the train is coming.

      Thanks
      Jeff-

      • I feel like I’m still muddling my way through trying to figure out what to do to help our freshly minted 18 year old that is suddenly on her own by choice and basically couch surfing with unsafe people. Just days ago after she left the group home as she was now legally allowed to do so, we are realizing that perhaps we should have gone through the guardianship process before she turned 18. I don’t think we fully understood what she needed or I would have done it sooner. We just found out we still can, but it will be against her will and we will have to jump through a lot of hoops to get there. She is setting herself up for being victimized in more ways than one.

    • Wow, so many thoughtful comments. I think Janet has made such an important point. She’s right, many of our kids (or at least mine) were not “cuddly.” Like her, I wonder if the response from neighbours would have been quite the same with a “difficult” child with FAS. I’d like to think so, but I’m not sure.

      And as Julie says, because our kids are difficult, we don’t want to set ourselves up for criticism. Her comment reminded me of how sensitive I was when people judged me. I probably didn’t ask for help sometimes because I wanted to protect myself from such criticism (which is important thing to do when it comes from people who don’t know what – or who – they’re talking about).

      And I think Stephanie is onto something here with her thought that polygamy might have its benefits when it comes to raising a child! 🙂 But yes, my group is probably better.

      These comments all point to the importance of the comment Sue and Sheila made about finding an FASD support group, if we can (no judgement!). But of course, there aren’t that many groups out there, services aren’t good, and we’re too often left to fend for ourselves.

      Thank goodness we have one another and FASDForever! My best to all of you.

  3. I am in the diagnosis process of my 12 year old son – and I have also had a very hard time reaching out for help. I really love that you all came together & trained on how to help – I know one of the reasons I hold back is because I need people who know how to help, not more people who will critically tell me what I should do to parent him! Thanks for sharing…

    • Thanks for the comment Julie.

      You are so right, there is nothing worse than help from people who have no idea how
      or what caregivers are dealing with on a day to day.

      I can’t tell you how many times I would have people say. “If I had them for a week
      I would straighten them out”.

      Inside I think “Buddy you wouldn’t last 2 days”

    • If you can, find a FASD parent support group in your community. Ours has been such a life saver! The practical, outside of the box ideas we can share are what gets you through the day. We even do some family activities together. It is such a great resource and so great to feel supported and understood and not judged.

  4. I have a stepdaughter who has, What is known to be fetal alcohol spectrum disorder. In This case the facial look is not apparent and to get her diagnosed to be able to get her the correct recourse are so difficult. even a specialist failed to test because she said my daughter doesn’t look like it and gave her a diagnoses for Executive Skills Disorder and A.D.D. ( isn’t that symptoms! Lol ) we will not let them medicate her. luckily the teachers we had didn’t see A.D.D. either, they were very supportive and my daughter started to flourish she carried an A-B honor roll for two years. When the Mother left, we were able to move to Nevada so her dad could work for a decent wage, and once again they want a diagnose to give recourses. having the skills to aid in recourse, behavior management, and be involved in the school, she is succeeding in school. My concerns are we are swamped with school work every night and there is no time for her play and other activities. She is so willing to do the work there is not a rebelliousness. but the frustration of not having the time to have fun with her is a strong feeling,I share with my husband. were do I go to get her diagnose? So she can get recourse help with her Math, social studies, and science.

    • Nola,
      Your stepdaughter can get an IEP based on other Medically Impaired, or something like that. Request the school do a full evaluation to see if she qualifies for special education and/or special services. Once she’s “in” you can make very specific requests, like modified assignments and shortened homework, etc. If the school refuses, tell them you will seek a private evaluation and the school district will have to pay for it. If school system is being problematic about a disability, check out Wrightslaw.com where you can find loads of information. Also there are often state advocates for children with disabilities. In Montana it’s called Parents Let’s Unite for Kids (PLUK) but don’t know about Nevada.
      If you have evidence of drinking during pregnancy by birth mom, it is very, very important to seek a diagnosis within FASD. I took my adopted son to Univ of Washington FAS diagnostic clinic, which is very good. Unfortunately there are very few places you can get an actual diagnosis that falls with FASD, but it could help in the future if your stepdaughter ends up on the wrong side of the law. THere is a lot of movement toward recognition of FASD in the justice system.
      Also join FASlink listserve. It’s a super support resource/group!!!!

  5. Oh my the group sounds amazing! I know when the children were little I used to think polygamy might be the solution to all the needs in our house but your group is better.

  6. After 32 years of believing we had somehow failed our middle daughter, realizing her symptoms are totally FASD. We still need to contact her birth mom, but I knew the extended family and everything fits. Thank you for addressing the idea of asking for help. Our local support group via FB is fabulous and I feel helped just reading or some days venting to someone who understands. Educating our family and friends is a slow go, not from lack of interest, but lack of time and life. We are still on the learning curve ourselves and so appreciate everyone’s help who has gone before us. Blessings All!

  7. This topic of learning to ask for help is so timely for me as I have been struggling desperately with it. I am a soon to be single mom of 5 children. My two eldest are biological from previous marriage, my three youngest 9, 6 and 6 (two months apart) were adopted by my ex and I through foster care. Approximately 8 months ago I brought my 6yr old son to a psychiatrist due to increased aggression. She saw and pointed out to me, the markers in his features after only a few questions. She is a very human and kind Dr. She does not want to see him on heavy drugs and supports my attempts at holistic therapies. I teach children yoga and I work with my son on breathing, relaxation, massage, diet (no food dyes!) etc. My need for help came with a recent breast cancer diagnosis and subsequent surgery which I am recovering from now. The main problem is that my kids are with my ex during this time. The analogy once used on Jeff’s page comes to mind often. My ex is a fireworks factory and my son a lit match. My recovery had complications and the kids have been with him for 2 weeks. During this time my son has been suspended from the bus, recess and lunch for a week. (All unstructured times) which has never happened before. He has an IEP, his diagnosis was handed in months ago yet the principal that suspended him had no idea?!?! I’ve been on the phone with the school asking for at least temporary support for him during these unstructured times. I’m waiting for a callback. Any advice is welcome and thank you all for letting me vent.

  8. What an amazing story of support and empathy! I still struggle with asking for help for my daughter with FAS (6 years old) because so many of my friends still think “There is nothing wrong with her. She is a normal 6 year old and you are just trying to label her for nothing!” Therefore, it is hard for me to ask friends for help when they don’t understand anything that she (or we) are going through! Kudos to the mom’s in the story!

  9. “Is nobody listening when you do?” IF ONLY
    Having neighbors help is a blessing in disguise, knowing FASD has so many variances.
    Being a grandparent, not being able to raise a kid at this age is bad enough, not being able to raise this child with FASD when it’s not recognized in my community was tragic, you are not going to ask.
    If Only- This child needs to be around people they can trust, I was not fortunate to have that help, I lost family members because I chose to raise my granddaughter. She was diagnosed at birth, tacking 6 years to gain custody was a no brainer, the justice system didn’t understand what this child needed, with no system in place to support FASD we couldn’t teach anyone, we were learning on our own. Now that she is 20 IF Only supports were in place the neighbors would be a godsend, people would have understood, she would be more capable, more people would have created the right environment. I felt the last 20 years “no body listened when I asked”. Ultimately we have been working with Fanshawe to help us prepare her to enter their school, “We asked them to create the environment to get her GD her high school would not attempt. I will share with Linda in 10 months how I feel about asking for help. If Only, talk soon.

    • Just read Ethel’s post about her granddaughter. Fingers crossed that asking for help from Fanshawe is successful. My son, now 26, is going to a special program here in Toronto run by CAMH (Centre for Addiction and Mental Health) to get his GED (high school equivalent). So far so good, but only time will tell. Big step for him.

  10. I like this and its sentiments. It is hard not only reaching out for help when you have a child with FASD but it is harder still to actually FIND it even when you are screaming HELP ME from the roof tops! Support services for FASD are very poor, at least here in NZ.

  11. I agree with Claire about screaming from the rooftops for support and not getting any. FASD is so misunderstood that we have to constantly be explaining what it is and how it affects our child which is exhausting on it’s own. I have a horrible time asking for help but I am trying to be better. When my son was excluded from school for 2 months I had to learn to ask for help or else go crazy doing everything on my own (going through a divorce and adoptive dad not very involved or helpful). Thankfully I have a great brother and SIL that helped watch him when I had all the school meetings. And even though I don’t ask for support I will help others whenever I can. I am spending one afternoon a week cuddling triplet baby boys so the mom can get a little bit of a break. She can’t stop from saying thank you to us but I keep telling her thank you. Those few hours cuddling a small baby is like medicine for me because I didn’t get my son until he was 9months and I missed the baby stage. Also my son and these triplets were 2 months preemie so I relate to so much of what they are going through and will face in the future from being born so early. Plus they are sweet babies that haven’t started talking back and giving attitude like my guy does lol!

  12. How we have prayed for someone to help, for someone to understand just a little. We thought we finally found someone who was willing to give our family some respite and help with some services. Long story short……we had a visit from CPS last week and are sitting here awaiting the visit from the real caseworker (they sent a temp one out due to the weekend coming, but now Wed. is here, and so far no second visit). We finally really reached out, even though all of the help we did try to get over the past year has produced ‘0’helpers. The one time we finally get help and we are now paying a dear price for it. People on the outside do not understand, and when an issue arises, instantly we are judged as bad parents. Our family has been through soooo much over the past 5 years. Now this bit of help, from whomever made a false report, was most certainly the type of help we could have lived without. Not trying to sound cynical, but we are very tired, and these little bumps along the way certainly do not make the road any easier. God bless each and every single one of you for being who you are to your family and the precious, although difficult, life that has been entrusted to your love and.care.

    • Carl & Andrea (and all) I feel for you so much. I was and am in much the same situation. We adopted our son when he was 2 1/2. I spent the first year cuddling and rocking him as much as I could. We were assured he was not FAS because he had a genetics exam done when he was 1. HaHaHa. At age 12 his adoptive father left and at age 14, I was finally able to get him diagnosed. Once the diagnosis was made we were handed a pamphlet and said this organization may be able to help you if you want. Completely left on our own. Luckily I contacted the organization and was assigned a caseworker who helped me tremendously. I stayed in the program longer than most because we were in such a state (nasty divorce, learning about Fasd, trying to parent on my own). Long story short, ended up being the sole support in my son’s life. No one wanted to help me, including family, as I was just a bad parent and if only I stuck to my no’s he would be a “good” kid. I contacted Children’s Services on my own and begged them to take him back into the foster care system. Instead they set up a case conference and sent someone out to “help” me with my parenting. I did continue on but my son ended up a high school dropout and an alcoholic and has tried to commit suicide. I was desperate for help but no one seemed to want to (especially family). Carl and Andrea, I know how tired you are, but I commended you for sticking it out. As a final note, my son is a good kid with a good kind caring heart. He still lives with me (he is 21) as I don’t have the heart to kick him out to the “mercies” of the street. These kids/adults need us no matter how hard it is or how tired we are or how little help we get. My prayer and hope is that eventually we will get the help we need the same as autistic, down’s syndrome or cerebral palsy or any of the other recognized disabilities. God Bless you all and try to take it one day at a time.

      • This site has been encouraging for me to read and find others who also have or are raising a child with FASD. It is very true that outsiders do not understand. They believe FASD is like other teenage behaviors that can/will simply be “grown out of”. It really is a day to day experience, as each day is SO different from the one before. My best wishes to each of you.

  13. The problem with our kids is often times they look “normal”. A child with Down’s syndrome looks different and a child with CP looks different. People want to help because they see the child has a disability. When people see our kids they don’t think they’re disabled. They often think that they’re wilfull brats that need a swift kick in the butt. Their help can do more harm than good if you cannot convince them the child has a real diagnosis.

    • My Ex and I adopted our daughter at birth. She was a delight as a young child. Although, I worked with her most days to help her get through school. I knew immediately that she had FASD as I had been working as a special needs aide for several years by this time. My struggles started when my husband left and our daughter was about 11. Her world was shattered. Standing on your own and advocating for your child constantly is exhausting. You have to be on your A game at all times. Our other children think I spoiled their sister because I had to use less coventional ways of discipline. Grounding or removal of things just doesn’t work. And what works one time won’t work next time.
      My Ex didn’t want to believe his girl had anything wrong so I was up against a rock wall with no support. A rock wall that gave our daughter beer at 14. I even had a ‘friend’ and her daughter take my daughter overnight for a sleepover. During that night my ‘friend’ bought my daughter some coolers and dropped the girls off at a party. My daughter felt guilty afterward and told me what had happened. The downward spiral was started. She is now recovering from cocaine and alcohol abuse. She is holding a job, but cannot manage money and more often than not, doesn’t pay her bills. Money issues don’t make sense to FASD people until they are usually in their 30s, if at all. She refuses help. It is painful to watch her struggle.

  14. WOW! Sounds so much like our story! We adopted our son at 7 days also. He was diagnosed with FAS at age 9. And…birthmother never disclosed any drinking during pregnancy! I too felt overwhelmed at times! Thank your for this beautiful post!


Leave a Reply

Your email address will not be published. Required fields are marked *