Living with a mild Cerebral Palsy Child

living with a cerebral palsy child

by Azélia on 08/11/2010

in Cerebral Palsy,Family Life,Featured Sidebar Post

This post originally written in 2010 has become a place for families with children with cerebral palsy and for adults with cerebral palsy  to come and share their story.  I’ve let the comment box stay open and I’m happy to continuing doing so, giving space for people to voice their concerns/frustrations, but I’m no longer able to respond to comments.  I just don’t have the time.  For anyone interested in updates on my daughter’s condition check the Cerebral Palsy category and see other posts on the subject.  Thanks for sharing your stories.  7th January 2013.

It’s been 10 months since we were officially told the youngest daughter has cerebral palsy. It was a diagnosis that neither of us expected but weren’t totally surprised by since we felt deep down there was something wrong. I’ve already mentioned on here it has been a struggle for me to come to terms with, to accept how things are and that she’s not going to be un-diagnosed and  we can all go back to ‘normal’.

My lowest point was about a month after her diagnosis when I went into a depression lasting until the summer. Part of me was glad she had finally been diagnosed and we had something to work with or more appropriately something to work on. There would a plan set in motion as far as the health professionals were concerned and even if her physio therapy was not going to change we the parents would realise this was a lifetime plan not a weekly or monthly plan as we had been living in. Up until then we had been waiting for the week she was going to start walking, after the diagnosis we knew it could take years, if ever.

Being Grateful
This is perhaps the word that most irritates us when the subject of our daughter comes up. If I explain first that we are grateful she has mild cerebral palsy and so far shows no signs of it impacting anything other than her inability to move her legs the way she should, not having balance, unable to walk unaided, getting incredibly tired. We are grateful knowing what the label cerebral palsy can include, a child who is both mentally and physically impaired that our daughter has it so good with this condition.

The problem with being grateful is that we don’t feel it, we don’t feel grateful and in fact quite the opposite we feel bitter about it . It’s indescribable the pain we feel watching other children in the park running around wishing that your own child could be part of it or when I see other little girls at nursery school holding each other’s hands walking around being best friends it makes my heart ache. We are not grateful at all for her or for us or for her sisters.

I would like the permission to punch the next person, family member or stranger who tells us that ‘at least it’s only her walking and she’s normal in everything else’ or the next time the subject of our daughter comes into the conversation and someone tell us how badly a family they know have it, how their child is mentally and physically disabled and how awful their life is.  I don’t want to hear it. I don’t want to be told by someone who has no frigging idea what my day-to-day week-to-week is to tell me how good I have it because someone else appears to have it worse. Just don’t tell me, you don’t have a clue how my everyday becomes a struggle, something to get through, a countdown until the day she can walk.

The everyday of going to the toilet or potty is an event, doing your weekly shop becomes a logistic nightmare. It’s not until you start doing your everyday stuff you see how much impact a three year old’s inability to walk has. Everything you do has to be stopped at a drop of a hat because when she needs help it’s immediate, cooking the family meal becomes fraught.  Then there is the physical aspect of continuously picking her up and getting her in and out of the car, my back was already problematic before this.

Being Labelled

From the start I’ve had no problems with her being labelled with the cerebral palsy sticker but Bikerboy has. I’m not going to speak for him but I know it’s been something he’s taken time accepting, and this is quite normal for a physically able family to feel this way. I think because it’s me dealing with the 3yr old on daily basis, struggling to keep up with normal routine I accept the label and at least am able to compartmentalise in my head why. It has stopped me getting frustrated with her. Before her diagnosis there was a part of us that thought she was just afraid to walk, her continuous falling over made her afraid and she just needed to want to do it. Now we know it’s the wiring of her brain making her unable and there is nothing she can do about it.

I have a label for the times too when I’m out with her and she happens to knock off the books on a shelf of a bookshop because she looses her balance, I can explain to the other mother who picks her up and says, “ok darling? let me hold you up, ok now? Do you want to stand up?” I can say to her no she can’t , she’s disable and can’t walk.   When I carry her from the car across to the chemist to drop off of a prescription and the chemist attendant surprised to see a big child carried and put down on a chair says, is she not well? I can say she’s fine she has cerebral palsy. I have something concrete to say to people.

Above all, a label of her condition means we have a course of action with hospital care, doctors, therapist and anyone involved in her treatment. When applying for extra help on the NHS she is put into a box of ‘having the right’ for the care and even though we still have to fight for the treatment and medical attention she should have it’s not as hard fight if she didn’t have the label. Her school tell me things are so bad with the aid that even children with more severe disabilities than my daughter get turned down for extra help at school.

Family
The 3 yr old condition is hard on the siblings, it’s the amount of attention she requires and the frustrations she shows through her temper can be exhausting and the impact of those means her older sisters have to give up their time to lend a hand. They are incredibly good with her and supportive and of course in return they receive her affection. The funniest thing is the 3yr old now knows how to play one sister off against the other, she will say to older sister she loves the younger sister and vice versa!

Since the 3yr old shows signs of keeping up with her peers mentally and in fact in some areas such as vocabulary she excels, the extended family have taken the view that everything is fine, everything is normal. When they see her and the interaction with her is normal and they see a very sharp witted and bright little girl they sort of skim over the problems she is facing right now and will be facing in the next few years. They speak of her in terms of what she will be like as an adult, ‘she’ll be ok because she’s bright’.  None acknowledge the problems for her now.  I’m guessing they’re resolving that this stage is just a blip. Maybe it’s because they are not around it’s easier to be consoled with that way of thinking. They lack interest in her physio progress and the rare times they have her for a prolonged period of time feeding her becomes far more important than her daily physio routine, no matter what emphasis we make.

The Physical Gap
I see her frustration come to the surface now because she has become aware she can not do what other children her age do. The flip side to being very bright and showing signs of good intelligence is her anger builds up and her temper erupts. She is fully aware she can’t run after other children at nursery school or be as quick to grab things like others. When they have to line up in 2 by 2 to attend the bigger school she will comment that she can’t hold another child’s hand to walk together. When the discussion came up of the Christmas play she volunteered to play the main character but there is no way she can play it because of the movement they have to do. She will have another main role and the teachers are incredibly sensitive to her emotional needs and compensate.

What’s difficult to see unless you’re involved with her on a weekly basis is the gap that has opened up now between her and other children with respect to her physical disability. She has her walker, a frame given by the hospital to have some independence of movement and uses that walker too well in fact to the point we are shortly having to address her miss-use of it. The problem is she uses her arms more than her legs and deliberately drags her feet which is totally the opposite of what she should be doing for leg muscle development.

Emotional Development
My biggest problem as the carer is her emotional needs being dealt with properly and dealt with now while she is so young putting her in the best possible place emotionally to face whatever in next coming years. She needs her confidence to grow and to be nurtured. Right now as parents we do not know if we’re doing more harm than good when addressing her problems. We try hard to whenever she points out things she can’t do to turn it around and point to things she can do, emphasising the  positive, but really we’re shooting in the dark here we have no experience of a physical disable child.

I have experience of a child suffering great disability from multiple food allergies that restricts her life in various ways but with that child I could protect her in the early years of her life cooking every meal myself. The allergy child is now at secondary school and this is the point where her life will get harder as she wants to spread her wings for independence, she’s having to deal with her allergies herself some of the time. The times the allergy child would break down and cry I comforted her as best as I could and I think I did ok.  And on the point of the allergy child, she still needs lots attention too with her epilepsy problems and the increase in her allergies and intolerances,  I’m split between the two.

With the 3yr old’s disability I feel I’m lacking knowledge in how to best handle things. The difference between allergy child and 3 yr old from my point of view is the following; while allergy child was young she could easily disguise herself as normal in the playground and when out, most importantly she did not stand out. The 3 year old has a big frame that separates her from the rest, she can’t blend in, she is reminded every day of her differences and right now I don’t know how best to handle that.

Accessing Treatment
From the moment my allergy daughter was 8mths old and I saw the way her consultant disregarded her medical needs I knew then it was down to me as the parent to be the advocate for my child and stamp my feet if needed be until my child was dealt with properly. It was no different with 3yr old when her problems became obvious. We spent a lot of time and money searching for possible treatments outside the NHS just to see what was out there.

We also had to fight for a good physio therapist at her hospital which we now have. We had terrible experiences of therapists, one being inexperienced in mild cases like my daughter and choosing to fight me rather then work with me on best course of action for her. We then had a therapist who was very experienced but had absolutely zero skills communicating with a young child and used to make her cry…not what you want from a physio therapist at this age. Finally we hit jackpot with the current therapist who also happens to be the manager of the centre and he is perfect for her and seeks a good relationship with us, he’s willing to listen and goes outside the NHS theory of ‘one box fits all’ treatment, the perfect combination.

We are very lucky to have the most wonderful orthotics person who’s gone out of his way to help my daughter and I shall post about him at a later date, people like him need to be praised. My fight at the moment together with the school is to access the help from the local authorities so my daughter’s needs are met while at school and access to a child psychologist experienced in disability to give us some guidelines how to best help her emotionally. I want her to grow up a fully rounded person and I would feel a failure if she built herself a barrier, excluding herself from being involved and being a fully participant in life.

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{ 80 comments }

Azélia April 3, 2012 at 10:49 am

hi Anna – Have a look through the category Cerebral Palsy on my website and you’ll see posts I’ve made on my daughter.

I don’t use forums, but my husband has in the past visited Scope’s forum, see if that is the sort of thing you’re after.

It’s only natural to feel alone at this stage and the only comfort I can give you is that this stage you’re going through is a process which although you can’t short-cut it or skip it will however pass and you’ll find your way through to the other side. You have to give yourselves time to grieve, feel anger, despair, frustration, unfairness of it all.

Talking as someone on the other side once you start seeing the progress your daughter makes it will bring you hope that her future will be ok and she’ll do ok in life with some adjustments, and since our job as parents is to make our kids independent once they leave the nest, you’ll find comfort in knowing she’ll manage without you because of all the support and encouragement you’ve given her.

My best piece of advice is to never settle for physiotherapy if you feel it’s lacking, fight for good physiotherapy. The therapist I had the most trouble with was a young inexperience girl who came out of training giving my daughter the standard “treatment” for ALL kids with CP and not seeing my daughter’s particular needs. She argued with me insisting my daughter had to wear the AFO which was wrong for her as these leg braces made my daughter stop wanting to walk and hurt her feet. The AFO are not there to make her walk just to make her stand in a certain position and I only found this out after months, as I had been previously sold on the idea they were to make her walk which is not true. AFO are good for kids who can’t stand on their own and/or bend their toes under their feet, none of which was my daughter’s problems.

I now have the manager of physiotherapy looking after my daughter who has experience of all sorts of mobility with CP and together with the exercises of stretching he taught my husband to do every night and shoe inserts made for her, she has made progress.

It’s hard to go against NHS stubbornness but if you feel your commons sense goes against what’s being said then fight it, sometimes there will be dead ends you’ll go down but don’t give up because you’ll look back and know you’ve tried your best for her.

Best of luck to you.

Maggie May 8, 2012 at 5:23 pm

Hi Azelia,
Your daughter is beautiful! And I love that she is bright and sharp minded… that talent with bloom in it’s own ways throughout her life, and be an advantage for her in school and in work later on. Good for her!

I have mild CP…
I think you’re doing a great job in taking care of your daughter You seem to understand the difficulty that she is going through. There is no better friend than a mom <3. Does she do a lot of stretching? that and massage… helps so much.

I’ve done meditations, which helps me to relax… being active helps, and strengthens parts of the body which is good.

in life nothing can stop your little girl from becoming something truly great. she will excel in things no doubt. sometimes having this condition makes a person stubborn or in a better way to put it, persistent and determined. and patient. she might be tantruming now, but that’s every toddler/preschooler. on top of that, she is expressing her frustrations with her condition and learning to cope and manage her emotions. but as she gets older, she will learn better coping skills. early in life we face the realization of things and reality hits you bit by bit. and through life we face obstacles that challenge us. but with growth and maturity come better ways to cope, and the challenges make us wiser and stronger. and with the help of family, therapists, and doctors, we learn skills in daily living that free us to focus on other intellectual pursuits. give her all the resources and intellectual, cognitive, sensory, auditory, visual stimulation that all todders need at her age, and she will meet so many developmental milestones. the things we learn and are exposed to in the first 8 yrs of life create the basis for our personality for life. as long as she has the support and understanding from her parents, she will have the security to become who she wants to be. it’s her relationship with the ones closest to her that matter the most. that is what gives us the greatest satisfaction in life.

i wish you and your family the best!

Azélia May 8, 2012 at 10:52 pm

hi Maggie – thanks for stopping by and taking the time to comment. She’s doing well and she does get exercises to help her.

I appreciate your sharing and it sounds like you’ve managed yourself well through your difficulties as you’re perceptive and able to see things in a good light.

thank you.

Beatrice July 30, 2012 at 3:53 am

Hi
Reading your post, I can’t help but be struck by the similarities. Your feelings are so normal. Our daughter is severely disabled, and totally dependent on others for all aspects of her life. Yet she can talk. Small mercy. No matter how ‘little’ or ‘a lot’ a child is affected, the feelings of loss are similar. It’s a struggle and your feelings are valid. Never apologise for them. All I can say from my extensive research is there seems to be a set pathway with splinting and exercises and surgery, and what you get at about four is what you get as an adult, no matter what you do, the spasticity comes back and seems to undo everything. We keep the monster at bay with hydrotherapy and splinting and recently, surgery. Stretching by hand doesn’t do anything. There is no evidence for any therapy working long term. Good luck. Great post by the way.

Care August 2, 2012 at 10:28 am

Hello there,

I came across your website trying to get some help to bake a decent bread, then ended up reading this page. I have personal experience of growing up with some one close to me who was born with just one hand and one limb. and i know how much challenging it is espicially for the parents to wake up every morning to see your child grow and start wonder what is there for her in the future. The world can be really crule for childrens like them and painful for us who care for them, i dont have comforting words but to let you know she is now 23 and enjoying teaching englis at a nusery school (she told me that once she voluntered to teach math and she totally forgot that she only have 5 fingers and she couldnt teach her students the math rhyme of counting fingers….its amazing to see her grow strong and even stronger to make joke about her self) people still stare at her and at us when we walk to town … now she just say she feels sorry for them who are the so called normal but dont have the capacity to be kind human beings! I am sure your little one will grow up to be a strong happy & a kind human being as she has a mother like you! Take care…..i will keep getting helpful tips from your blog! Thankx

Rona September 6, 2012 at 11:28 am

Hey I think you a ace mum. It’s just sad that adults see a problem as most kids don’t.. Enjoy her some people are always complaining about child but you know you are so happy she can smile and communicate. It could have happened to any of them mums but it happened to you and I thought many of time thank god it was me as I know I’ll see positives and see past the bad bits (most days) x

Azélia September 6, 2012 at 9:01 pm

Thanks for stopping by Rona and sharing your thoughts. She’s doing well. Thank you.

ashley September 25, 2012 at 5:28 am

Hi im ashley im 23 yrs and i also was born with cp. I just wanted to say that having cp made me,who i am. I live my life just as,a,nornal person andi have my whole life. I went through 14 yrs of physical and speech therephy. i now can walk talk drive my own car and i am working on my BA in special education. I guess my reason for writting you is to say doctors can only tell you what they learn from boojs and,such but a childs future renains in their streagh to become whoever they want to be. I admire your stor. Good luck to your famolt

ashley September 25, 2012 at 5:38 am

Sorry i was typing on my phone…allow your daugther to push herself cp is a part of me but its not who i am…..anything is possiable.

Azélia September 25, 2012 at 8:44 pm

thanks for sharing your story Ashley, it’s good to know that’s how you feel about it.

Daisy-may October 11, 2012 at 10:20 pm

Hi there,
I found your comments whilst looking for bread recipes. Our grandson has severe CP so know ow you are feeling. There is a marvellous charity-run group called Brainwaves that assesses children and gives a set of exercises to be done every day and the results they obtain are brilliant. They must be good there is a 6-month waiting list and people come from all the world over to have their children get on the course. They give parents and children alike hope for the future, they are exceedingly caring and helpful..

Emma G October 15, 2012 at 7:58 pm

hi my son is just coming up to three and we have been diagnosed today but i have been fighting since 6 months saying that some thing is wrong and nothing was done now they have finally admitted some thing is wrong I feel the same he can walk but falls alot and is very unsteady and his boots hurt him and i was told he was lucky it was only mild I love my son more than i can say but lucky ? they said my son is bright and sharp also but it does hurt that he cant do what all the other kids do and im trying to accept this and struggling i dont know what the future holds for him. Your daughter is beautiful and i do hope it does get easier for both of us .

Azélia October 16, 2012 at 8:09 pm

hi Emma – thanks for stopping by and sharing your story.

S.J. October 22, 2012 at 4:48 am

Hello Azelia. There is a possibility my daughter has mild cerebral palsy. This is what the surgeon that did her heel cord lengthening told my husband when she was 8. She is now 13 and I have noticed many things throughout her life that seemed odd, but have made so much more sense the more I read about mild cp. To the public she seems completely normal, only close family members know of the struggles she’s had. My dilemma is that I feel like there is very little information about mild cp out there. I have been told that this disorder does not progress, so that whatever problems she’s had in the past will not reoccur and that the only thing I am going to gain from seeing doctors about this is my own piece of mind. I feel silly talking to a doctor about her future when her present seems so normal, except for the subtle things we notice like coordination, stiffness, and hearing she has increased muscle tone when getting a sports physical. She plays sports (although not as well as others) but she certainly tries. This, weekend her first volleyball tournament, her coach benched her for almost the entire tournament because she said “she wanted to win” makes me want to scream at that stupid woman that she’s doing the best she can…I feel like I cannot share my suspicions that she has mild cp because she has never been diagnosed, and I don’t want to make her feel like she can’t do whatever it is she wanted to do.
I am unsure if I should pursue this medically. I fear that doctors will be irritated that I am wasting their time since she is otherwise very healthy. I also fear that if she is diagnosed she will have this label attached to her that will increase her future insurance premiums…all for my own piece of mind. My biggest concern and question is: she has had speech problems and a couple of muscle contractures in the past, all of which have been corrected. So is she in the clear now? Is that all that’s going to happen and she doesn’t have to worry about it anymore?

Kat November 1, 2012 at 10:34 am

Thank you Azelia,
I needed (and in a way didn’t!) to read this after my beautiful, happy and bright 18 month old daughter has been recently diagnosed with having mind CP.
A shock to the system.
How do you cope with the unknown?
I was so excited a few weeks back when she took her first steps, something we (and she) had been desperately waiting for. Now I feel a bit silly; it might be weeks, months or years until she can walk.
I hate not knowing!

shanett November 20, 2012 at 1:34 am

hi my nephew has cp where living in Jamaica where they don’t have the resources to help kids with cp our only help is physical therapy and let me tell you its expensive his mom left him when see found out i as cp so its me and my mom he’s home school cause there’s not a school for him in our community its really hard on my mom and she does everything for him because his legs for really tight and turn at the ankle’s it breaks my heart to she him crawl on the floor he can’t play with the other kids somethings he cry saying he doesn’t have a life we are all spend out we’ve try everything nothing work’s for him am happy for your little girl i pray it happens for my nephew too

Maria November 26, 2012 at 6:14 pm

Hello Azelia,

Let me start by saying your daughter is very beautiful. I would like to say to know I know exactly what you are going through. My son was diagnosed with mild celebral pulsy. He could not walk on his own, and we had to carry him every where we went. There was a time where he crawled himself all over the house and outside in the yard. I was so tired and very at myself because I could not understand why my child was born like this when through out my pregnancy all the doctors said everything was normal even the special test where they stick a big needle in your stomach turned out normal. My son was born weighing eight and a half pounds. Even when they checked when he was born, doctors stated everything was normal. My son is now seven years old, and is now walking on his own, he no longer uses a wheel chair, or a walker, the only assistance he needs are his AFO’s. I give thanks to God for having met his orthopedic doctor in chicago Dr. Dais at RIC. This doctor is like a miracle worker. when he first took a look at my son, he stated “this little boy will walk” he took x-rays, and did a motion analysis, then called us for an appointment, he explained my child will have surgery which will lenghten his muscle ligaments, then will have three months of intensive PT. My son did not want the walking canes or the walker, he was determined to walk. After all the PT and we were released home, my son was walking on his own. I am very happy for Dr. Luciano Dias. The only thing we are now working on is having him potty trained. My son is now attending school and to help him concentrated his is taking a medication which helps him calm and focus more on his work in school. I truly understand how you are feeling because my husband and I went through the same exact thing. I also understand how you feel when people say how wonderful your child is, when your child is having a difficult time they sit there and think the child is only a tantrum and needs a good spanking. Especially family members who do not know what goes on in a daily basis and what you are going through with your child. I had a brother-in-law who was talking with other family members about my son when we had a family picnic during the summer. He was watching my son and my son had one of his moments where he just kept yelling at everyone who went near him and he did not want to eat his food. My brother-in-law stated “he was my son, I would have already spanked him because that’s what he needs.” Reading your story, is like I was reading my life with my son. I feel your pain and your sadness because I am going through the same thing, only difference is that my son has his anger and aggressiveness. I implore you to look up Dr. Luciano Dias at Rehab Institute of Chicago. (RIC) He will help you I promise you, he will get your beautiful little girl walking. The wait list is long, be trust me it is worth it! We waited three months when I made the appointment, the wait was worth it because my son is now walking on his own. DO NOT let any doctors lead you to believe there is nothing they can do for your child’s walking, because they are wrong!

Gemma Denny December 21, 2012 at 4:19 pm

Azelia,
I just made your whisked sponge a first for me! I read about your daughter and I empathise with your grief. It is such a short time from getting the diagnosis. I have taught two children with mild cerebral palsy in a mainstream school. Neither had a care assistant but got help for any educational difficulties. As your daughter gets older she will learn how to cope with her physical needs. Both children I taught were very popular and one was elected as his class rep on the Student council. It is no help to be told ‘Things could be worse’. Have you read the short pamphlet ‘Landing in Holland’ written by a mother in your situation. . I think it sums up the sense of loss you are feeling. Your daughter will have a different life to the one you had planned but it need not be any less wonderful for her. New technology should enable her to manage her disability and her prettiness and strong character will allow her to fit in with other children.
Gemma

Misty December 27, 2012 at 5:02 am

I would really appreciate any feedback on our situation. Our son is 20 months old and in the process of being diagnosed. From what I have read, I think that he has mild CP. A pediatric neurologist has mentioned that he may fall under the umbrella of CP, while other specialists do not detect any CP at all. They are now doing genetic testing. He is not walking yet, but cruises around with a push cart and has taken the odd step on his own. He has missed a few milestones, but seems to be eventually getting there…just at around a 7 month delay. He is very unbalanced and seems to tire quickly. He is often happy to sit and play rather than push his cart around for any length of time. We notice a tendency for his fingers to curl under occassionally…sometimes when he is holding his bottle, or while he is crawling on the floor (they bend under at the first knuckle)…and they seem to do this more often when he is tired. He is very social and laughs a lot and babbles, but is not yet talking. Can anyone comment if this sounds like it could be mild CP?

Azélia December 28, 2012 at 9:33 am

Misty – thank you for sharing your story here which I welcome. Unfortunately it’s not a medical site and I can’t allow anyone advising on your son’s medical condition it’s not something I think it’s right to do here.

Azélia December 28, 2012 at 9:50 am

Thanks Gemma – my daughter is doing really well there have been update posts since this one. We’re very proud and pleased with her progress.

Misty December 28, 2012 at 10:00 pm

Hello Azelia,

I’m sorry if my original post seemed self-serving. I’ve never posted on a blog before and I wasn’t sure if you would receive my message which held me back from commenting directly to you. I felt very moved by your story and relate to your feelings in so many ways…it truly helped me to read about what you were going through and to find someone else who feels so many of the things that I do. I just want to thank you for taking the time to put it all “out there.” My intention in sharing my story was to hopefully find another parent who could say…yeah, that’s what our child was like as a toddler and he/she has been diagnosed with mild CP. I don’t know if you feel comfortable commenting on the symptoms your daughter displayed as a toddler, but I feel that for her condition to go undiagnosed for so long, she must have had little to no symptoms. With our son only some specialists can detect slight hypertonia while others do not. Perhaps your daughter was similar? He also tends to sit cross-legged (scissor)which I read on-line can be an indicator of CP. I find the not knowing what we are dealing with to be a very difficult place. Every time we go to a specialist, we get a different take on his condition. I was just hoping for someone to come along side and perhaps give me some direction. I completely understand if you do not feel comfortable doing so and I’m sorry if I offended you in any way. I wish you and your daughter all the best and I truly hope that we all find the peace we need when dealing with the uncertainty of our child’s future. Thanks again for providing a site where our feelings can be heard.

Azélia December 31, 2012 at 8:26 am

Misty – the problem I have it’s not that your message as you put it, “I’m sorry if my original post seemed self-serving”, it doesn’t matter to me that you want to share your experience as others have on here and that is all you want to do, and I meant it when I said you’re welcome to share it. The problem I had with your first post was that it appeared to be asking a medical diagnosis on here by asking, “Can anyone comment if this sounds like it could be mild CP?”. I have a problem with allowing a space for anyone to give you diagnosis to something no one can over the internet, and I hope you can understand that, it would be most irresponsible of me.

I can tell you our experience was that it was impossible for the medical profession to even think about diagnosis of CP until our daughter had past 2 years of age because it is a difficult, complicated and varied condition and there other things that it could be. Your medics may get the diagnosis wrong since there is no one defining thing which makes a child have CP. So the process of diagnoses is about eliminating other conditions first that can be tested for. When other tests show up normal it seems the CP umbrella is then used, that has been our experience from what our experts have said, and we did check out other possible avenues initially.

I can also tell you having had two other children that it is normal for children to develop at different stages even when brought up in the same environment so missing milestones is a difficult one.

I hope this helps.

Misty December 31, 2012 at 7:40 pm

Thanks Azelia for your response. I need to accept that the time of waiting until we hear back from the genetic tests is going to be difficult and that no one can really ease that for us. We are definitely doing all that we can to find out what is causing the problems for our son. Even if we do end up with a mild CP diagnoses, no one can really tell us what that will look like for our son. I guess every year will bring us to a better understanding of what he is capable of and the challenges that lie ahead. I must say that it forces me to rely on God in a way that I never have before. However, it is still a heartbreaking experience and one day I hope to live in the peace that I once did. I certainly have more compassion for other families where a disability is present and I didn’t even realize my own ignorance until I was faced with it in my own life. I do believe that is one good that has come of this.

Cherlyn January 3, 2013 at 4:37 am

To the family that posted this story.
First of all let me say that your youngest daughter (the 1 with the CP.) is a beautiful person (even though I don’t know her) & she need to know that. I have mild cerebral palsy as well and I have to go though every thing that she dose go through and will yet go through! But it’s going to be okay,she will grow up to be successful at that she Decides to do in life, the but a way you can help her in that is to be her “support-team” weather that be emotional,physical or etc. focus on her abilities more than her limitations. That will pay off in the long run. Trust my I know because she and I share the same disability and my parent got the Parental help needed and kept me encouraged. It will build her self-esteem and encourage you all and other around her. :)

Azélia January 3, 2013 at 9:20 am

Yes, I couldn’t agree more with you Misty – one doesn’t understand what it is like having a disability until we’re faced with it personally or through someone we’re close to.

Ashley January 6, 2013 at 9:51 pm

Hi,
My daughter is 19 months old and has always been delayed and I’ve always had a gut feeling that something was “wrong”. I fought with the doctors from day one to have an mri or a physical therapist or any kind of explanation of why she didn’t hold her head up until she was almost 6 mo and finally started crawling at her first birthday, she doesn’t speak but instead babbles. She’s aware and seems to try to speak words and is terrified of standing. She had torticollis from a difficult birth and the doctors contributed her global delays to that. I finally found a pediatrician worth a damn and now have the ball rolling. She’s seen a neurologist and we are waiting for scheduling of an mri and swallow study. I am so mad all the time and your blog really brought some relief to me. My husband doesn’t understand why I’m so angry, my friends and family don’t either. My heart breaks to even see other kids her age and I want to drop kick their parents for screaming at them for running around or talking too loud. I may be ungrateful because my daughter’s condition could be worse, but I feel that the world is ungrateful for their healthy children. I’ve worked with people with disabilities, and I know how people look at them. Right now we are in limbo, but I know she has mild cp. Everyone tells me she will be fine, and I get so sick of hearing it I could scream. If you ever need someone to talk to feel free to contact me, I would love to talk. I’m so depressed and frustrated and angry. Does it get easier?

Azélia January 7, 2013 at 11:27 am

Ashley, if you look under the Cerebral Palsy category there’s other posts of my daughter’s progress.

Ashley January 12, 2013 at 1:14 am

My daughter is almost exactly like yours. I struggle with it daily and I understand exactly the points you make. I feel for you. I want to get people’s opinion on a question. My daughter is now 5 and she falls alot. She has fallen quite a few times and hit her head HARD. 2 times required stitches but luckily no catastrophic injury from this. Her luck will run out one day I fear. How do you feel about letting her go to people’s house? She occasionally goes to her cousins to stay the weekend and I worry she will be injured. I watch her like an eagle eye and even I can’t stop it from happening everytime. Last time her aunt came to pick her up for a weekend I said there’s a few things that I’d like to remind you about her safety and her response to me was “great you got it written in a notebook or some thing” she said it rudely with an eye roll and it still bothers me. Any advice?

Cherlyn January 15, 2013 at 8:35 pm

People with cerebral palsy (my self inclued) are a unique people.
We put up with more than a person with our disability feel that they could put up with. And yet we’re always smiling. :) I have mild spastic cerebral palsy. I’m age 20 now. I have ran into many different type of reacts to my physical disability. Most of the reaction I would get were very positive. Example: in grade school I made all the friends…u know why? Because I got of class earlier than everybody else! Lol.
This had a 2 told benefit. #1. Getting out of class earlier gave me a chance to get to my next class on time. #2. Because I look different other who may walk near me in the hall wall got a chance to ask why I walked the way I did and I got the chance to tell them. :) people with cp no matter or how Severe we are still people some just dont how to embrace that fact that we (people cp) are different.

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