Moms of children with special needs can feel as guilty about having impossibly high expectations of their child's behavior in difficult situations as they may feel embarrassed by the child's 'meltdown'.

If you find yourself falling into a downward spiral due to the stresses of motherhood, a child's diagnosis, and problem behaviors that seem impossible to change, you are not alone. Any one of these three difficulties have caused the best of moms to slip over the edge.

Something as serious as being overwhelmed by a young child's misbehavior is becoming unable to cope with the crying or demands of babies. Mothers of newborns and older babies can suffer seriously from bouts of the "baby blues" as well as the extremes of postpartum depression and psychosis.

This can happen to any woman and rarely gets better without professional help, often combined with medication. Any woman can easily overestimate the amount of suffering that qualifies her for help. No matter how old your child or children may be, you deserve support, encouragement, and counseling during difficult times. You are a good mother when you recognize that taking care of yourself is an important part of taking good care of your children.

So often, we expect ourselves to be perfect mothers every day, when what works better for everyone is being an adequate mom *almost* every day, and getting help when we need it. Children with special needs have the same behavior problems as mainstream children, and often respond to the same discipline strategies. There are also excellent resources and individuals dedicated to families of children with specific disabilities and problem behaviors. Leave no stone unturned when seeking help for your child.

The best gift we can give our children some days is to not be there for fifteen minutes or an hour while someone else steps in to give us a break or to get us through a crisis. This is as true when a crisis happens every day as when they happen twice a year. You will know when you need help; please don't ignore the inner voice or early signs. You deserve respite and support, and should have it before a crisis happens.

If you often feel overwhelmed, or if you feel you are in crisis at any time, no matter what your circumstances, call for help, just as you would if another family member needed you to call 911. There may be a local or regional telephone help hotline, a parental stress service, or resources through a local hospital or mental health service.

You may need to call your family doctor or your child's pediatrician to be directed to the help you need. Sometimes it is impossible for a mom to see past a time of depression or despair or to recognize how serious her situation could be. Don't give up asking for help until you find the support you need. Give yourself time to rebuild your strength and inner resources and don't give up on yourself. You are a very important person in the world.

Author: Pamela Wilson
http://www.bellaonline.com/articles/art32504.asp

If I had a formula for bypassing trouble, I would not pass it round.  Trouble creates a capacity to handle it.  I don't embrace trouble; that's as bad as treating it as an enemy.  But I do say meet it as a friend, for you'll see a lot of it and had better be on speaking terms with it.  ~Oliver Wendell Holmes

Topic: Peer Interactions

Hi,

I am writing to gain information on CLS children interacting with peers. Lucy attends a main stream local school. She has had a lovely 'best' friend and he has recently left. Lucy is struggling with this. I know she is sad and things take time. However, I did go to the school with my concerns and I don't think they really understand Lucy's communication needs when interacting with other children her age. I did suggest that the assistant and teacher should be helping Lucy with this. Can you point me in the right direct regarding any articles etc... that I can give to her teacher/school and for myself of course.

Kind regards
Lorraine Myatt, Western Australia

Hi, my name is George Dickson. We Dicksons live in Edinburgh, Scotland.  Our daughter Alisha, 13, has a confirmed diagnosis of CLS and is also in mainstream school. She also lost her only close  friends at school after they both moved to different schools, so I know  how you feel. It was heartbreaking to watch her be sad without the social skills to be able to do anything about it.

We found that the school did not really have the time or the experience to deal properly with her needs. We eventually managed to get her referred to an agency external to the school, but still part of the Education infrastructure, called the Visiting Teacher Service. (I make that sound easy, but it took a lot of work and luck to get to that point.)  I don't know if you have anything similar. This service sent a highly trained specialist on a weekly basis to work with Alisha during her last year at Primary school. First of all, she talked to the whole class to tell them of Alisha's special needs. Then she worked with a small group of volunteers from the class to work with Alisha in a 'Circle of Friends'. The aim with CoF is not to build an artificial set of friends, but to give the child strategies and confidence with which to engage with others. We found this a great help to Alisha, and also to her classmates. She didn't build any new lasting relationships directly as a result, but it set her up for her move to secondary school.

Last year, at age 12, Alisha started Secondary School. We approached this with great trepidation, but we have found that in contrast with the Primary School, the Secondary had much greater experience in dealing with children with special needs. Alisha attends a special 'base' in the school at break and lunch times where she can get away from the bustle of school life along with others who have similar needs. Through the base, Alisha has met many new genuine friends with whom she regularly socializes.

More recently, Alisha has started attending horse riding classes run by the Riding for the Disabled Association. This has been just fantastic for her confidence and overall happiness. She is helped by many older teenage volunteers some of whom attend the same school, so she now has more people who say Hi! to her and generally look out for her. She has done so well, that she has just been 'promoted' to be a volunteer herself and now also helps look after the horses, and we hope she will build new relationships with the other volunteers.

We've come along way from the time Alisha burst into tears at dinner one night saying, "I have no friends". 

I hope you make a similar journey.

George Dickson

Hi Lorraine and George and others who've replied to Lorraine,

It's good to hear from others with daughters with CLS and it does seem we are all facing similar issues with our girls.  We seem to be so few and far between, which makes it hard as parents to get the right support.

My daughter Eleanor has just had her seventh birthday. We live in Manchester, England. Eleanor attends mainstream school but has one to one help for 13 hours a week. We've only had this extra support for a year, following Eleanor's diagnosis and have had to be quite pushy with the school about Eleanor's difficulties, including her social issues, because initially they often treated her attention, coordination and social issues as "bad behaviour", much to our frustration.

The problem I find with Eleanor's condition is that unless you are familiar with the typical characteristics of CLS, Eleanor might appear at first glance not to have any genetic condition because she doesn't look obviously "different". Many people simply have simply found her a puzzle.

Her last school year has been the best so far, although we've now discovered that they are splitting Eleanor and her best friend into different classes for the coming school year, so your messages struck a chord with me. The two girls adore each other but totally block out the rest of the world when they are playing together. The thinking behind the split seems to be to encourage the girls not to be too dependent on each other and to encourage them to mix with other children more.

The good thing is, the school have been preparing them for a few months by putting in place a buddying system whereby the children are encouraged to play in different groups at certain play times. Eleanor doesn't seem too concerned about the coming split, as she herself says there are other friends she knows in the class she will be in, so hopefully the buddying has worked.

Eleanor's teaching assistant also gives Eleanor play time rewards, when she's achieved goals that have been set for her - she is allowed to choose a friend to carry out a particular activity with, such as playing a board game, or threading a bracelet. This way, her class mates are not so surprised or confused if she is repetitive, or doesn't respond immediately, or becomes a bit obsessive about something, or she starts to talk or sing to herself at times which are not considered appropriate.

I certainly think schools have a responsibility to help our children with their social skills and friendships and there is a lot they can do to encourage better understanding and acceptance.

Susie Roberts

Hi Susie, my name is Maureen Guy and my daughter Carly is 23 and has CLS. I completely agree with you that, because our girls don't look 'different,' their behavior can be puzzling to others when out and about.

Carly successfully navigated the regular schooling regimen, but with lots of supports. She did not receive a high school diploma, but rather a certificate. She now attends a post-high school program that focuses on daily living skills. Our town offers a lot of recreational activities for young people with special needs, so her life is very busy and happy.

Maureen Guy

Our journey was a lot longer. We realized that Alisha was different at the age of three, but it took until age ten to get a definitive diagnosis. Even after her diagnosis, the primary school did little to help, despite much parental pushing and mother's tears. It was only when (horrified) secondary school staff got involved in her last year at primary school did she start getting the help she needed. 

Your description of Eleanor as being repetitive, slow to respond, and obsessive is so like Alisha.

Alisha is well liked, but finds it difficult to make close friendships. She is quiet outside of the house or with people she doesn't know, but can be unstoppable inside the house. She can get trapped on a subject, or even on the same sentence  - we tell her that she's stuck on a roundabout and needs to get off at the next exit. When asked a question, it can take 5 seconds or more for her to formulate an answer. 

She's fearless and game for anything.  As long as she sticks to her routine things go well, if anything happens to upset the routine, then things can go wrong. New situations have to be well planned and prepared for.  

Alisha cannot go outside without a companion (she won't even go into the garden on her own), and cannot cross the road by herself. She's very naive and socially immature for her age. Physically, she is maturing normally.

She works like a trooper at school, and in general is doing much better in her tests than we expected.  I can see her completing school with qualifications, and I've not yet ruled out her going further. She always surprises.

George Dickson

Hi George
 
I was blown away after ready your email how like my daughter Caitlin, Alisa is.  Caitlin is 11 and we are from Perth, Western Australia.  Caitlin shows all the same traits as Alisha.  Like Alisha Caitlin is well liked at school but has no close friendships.  Caitlin is currently going to a small private school where she is in a class of 30 kids with one teacher.  She does get taken out of the class every day for extra assistance in math and reading but that’s all.  We are going to move Caitlin to an Ed Support Centre attached to a local state school where she will be in a class of 10 girls with 5 staff!  Hopefully she will thrive in this environment and form some friendships – fingers crossed. 
 
Julie Derby

Other Updates:

Hi All, my daughter Olivia is 3 and for the most part is just slightly behind her peers. We are currently in potty training mode and she is doing much better with it than a few months ago. I have been trying to teach her to use the potty for 1 year. I am curious to know how your girls  did in the toddler years?

We are working on our colors as she still does not know them. She seems to not be interested in learning them at this point. Her speech is excellent, however her talking is non-stop with me and yet when we are out of the house she can be very quiet. She comments on everything going on around her, noting what I am doing or our cat and what she is doing. She is interested in making friends and to have others to play with when there is just one other child around but in a class setting she prefers to play alone and watch the others. She seems to handle change just fine as my husband's job causes us to move a bit. Physically we had not had any issues thus far.  I just wanted to hear if you found anything (certain books or websites )  to be beneficial in teaching them ABCs, 123s etc.  

Amy Nolan

Hi Mary!  This is a medical update regarding our darling daughter Kathy. An MRI showed severe spinal stenosis at C5-6 and C6-7. Her surgery procedure involved anterior decompression dissection and fusion with plating which Kathy tolerated quite well. This all came about when a disc ruptured as a result of that Kathy lost the use of her right side. This took place 4 mos ago and we are happy to report that Kathy is 97% recouperated with much thanks to a wonderful surgeon and ongoing care from the staff at her group home and the prayers of so many.

Our best regards,
Bob, Barb and Kathy Kline

Hi,
My son Alec is now 17 and just this past 2 weeks we have noticed aggressive behavior. He punched the glass window in his bedroom and cut his hand ,biting assistants on his school bus , taking his shoes off and throwing them. Alec is super kind and would make peace in the middle east, so everyone is in shock. Alec is is meds for Severe ADHD since age two and just 5 months ago started Adderal  15mg. I want to know if there is any other parents out there that have had any experience with this at one time?

Sandra Hoskins

For us aggression is virtually always a red flag for anxiety or something not going well in some part of Jeremy's life. Lately, with Jeremy just starting high school, he seems more on edge and more easily upset, especially when an expectation of his is dashed (we thought he had missed the school bus yesterday and I said I would have to drive him to school, so he pushed me).   He also gets stuck asking the same question over and over ("What are we doing [next]? What are we doing?...").

Is there any way you can find out more about what is happening at school? Any bullying or teacher he doesn't get along with, or expectations that aren't met?  Any major changes? Any unidentified physical problem, like a toothache?
Of course, the meds might be affecting him too.  

Diane Englestad

I went though this with Alex when he got into his teens. Talked with the nurse at his facility and she had this to say: "I went though it too with my boys - it's called puberty."  Ouch.   It had not crossed my mind because in my mind Alex is still my baby.  I realized that he has no outlet for all of this new found... emotion.  He can't label it or reason through it.  Good Luck - and hang in there. 

Carolyn M. Meyer

If you don't think every day is a good day, just try missing one. ~Cavett Robert

Stephen, Age 20

Stephen was diagnosed about 14 years ago but at the time Children's Hospital in Boston did not feel the tests were reliable. I don't think the test results were conclusive but the genetics doctors felt the clinical results were. He was seen again by genetics at Children's about 4 years ago & they once again confirmed their opinion although I'm not sure I believed them or cared about the label. We've never paid much attention to the diagnosis & just focused on getting his seizures controlled & providing what is necessary for his maximum development.

Recently, now that Stephen is out of high school (we have been blessed with outstanding school support & resources) I became interested in joining the group for networking and education purposes.

John and Debra Cornish
Mattapoisett, MA USA

Ellen, Age 21

Nacho, Age 10

Hi my name is Pablo form Spain, father of Nacho who is 10 years. Nacho has just diagnosed with CLS. It has not been inherited, so is the first person in the family with the mutation in the chromosome X.

We, my wife Montse and me, would like to share Nacho`s  problems and progress with all you. He is a nice, lovely, very outgoing kid  with much vitality.

Nacho has had some surgeries  supposedly relationed with CLS:

The most we are concerned is about his mobility because of his kyphosis/scoliosis and his drop episodes. we hope his kyphosis surgery reduce the drops ( I don´t know if some of you has experience in this kind problem)

Nacho has moderate intellectual disability and follow language therapy and physical therapy since he was a baby. Nacho uses glasses, and we think he do not have hearing problems.

Well this is our kid, our lovely kid.

Thanks for your support.

Gabriel is a nine-year-old boy who lives in Somerville, MA. His parents suspect he has CLS, although he has had a clinical diagnosis of a different syndrome for the past few years. He attends a year-round special education ABA program.

He enjoys anything with a battery or wheels. He also loves playing with his seven-year-old sister Dagny or with his PCA Marc. Gabe's father Dan is from Sweden, and Gabe and his family travel there each summer.

Cristin Lind
Somerville, MA USA
 

Emily has hallucinations and major seizure issues which has caused loss of cognitive function.

Robin Williams
Decatur, IL USA

I'd like to comment about some good news. After some difficulties to walk because he was constantly falling down, now walks all the time. It has been spontaneous. He was recovering and losing the fear to fall little by little.

I'd like to thank for all the information of this forum that, in spite of our difficulties with the language, has been a big help, also because there is nobody here that knows about the syndrome. Special thanks to Mary from the Foundation and to Dianne, Diane for your replies, which have given us a great support.

Regards from Spain

Alejandro, Age 21

He is nice, happy, kind and friendly, however sometimes he have episodes of aggression (he bites, hurts and hits to us and his teacher and throws chairs, tables and photo frames, we think that is due to their pain and deformity).

He likes music, animals and go for a walk, have total dependence on daily living and grooming, poor communication and expression (not fluent in sign language), he moves recently crawling on the floor and we try to walk taking him under his arms but he has no coordination in the legs. We observe that the deterioration progresses without knowing how to help or give palliative care even though their parents we are nurses, because Spain does not know the evolution of CLS.

Ruiz Fernández
Granada, SPAIN
 

Olivia and Amy

Gabe, Age 9

Gerrit, Age 17

When it is dark enough, you can see the stars. ~Ralph Waldo Emerson

Thanks for Caring!

The following families and individuals have recently made generous donations to the Coffin-Lowry Syndrome Foundation:

Michelle & Brian Casey, Nevada, USA

Judith Fried and Robert Scowcroft, California, USA

Robert and Barbara Kline, Minnesota, USA

Send your donations to:  

Coffin-Lowry Syndrome Foundation

c/o Mary Hoffman

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Issaquah, WA 98027

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