My daughter is a sweet and loving child that has always been delayed in meeting all milestones i.e. walked at 18 months, delayed in speech, fine and gross motor skills. As an infant and toddler she had a lot of health issues - PDA heart murmur (closed when she was 3 yrs old, numerous ear infections (three sets of tubs and adenoids reomoved). She is still very petite 36lbs and 41 inches tall (3rd percentile on growth chart). We've recently discovered she is growth hormone resistant. This basically means her pituitary is functioning normally but her body isn't reacting to the hormone produced the way it should to make her grow properly. Growth hormone therapy will not help and the medication that could possibly help is new on the market. Currently, we are at a standstill until she falls off the growth chart as insurance will not cover the medication until then. Has anyone else experienced any of these issues?
Currently, she is healthy and acts like any 6 year old. She has caught up on her speech and has a vast vocabulary. She loves to sing and dance but doesn't care for the academics. She's currently attending kindergarten but still struggles with fine motor skills. She does know all of her letters and the sounds they make but still hasn't connected that the sounds to form words. The other thing we've noticed is she can recognize the letters but can't write them down if requested at random. She does write her first name and can write these letters upon request. We've been seeing an Occupational Therapist for help and she says she can see the intelligence in our daughter but she hasn't figured out how to get her thoughts onto paper. Has anyone else experienced these types of delays? We feel so frustrated and lost as parents but are trying to do everything we can to help her reach the level of other kids. We have hired her teacher to tutor her one day a week and the school is getting involved to have her certified as OHI - otherwise health impaired due to the health issues she suffered as a baby. We don't discuss this in front of her because we don't want her to feel inadequate or different from the other kids.
Any advice would be appreciated.
Thank you for all of your advice!
Our daughter is making a lot of progress! She can now write most of the alphabet without help! The OT continues to help her with memory and fine motor skills(she shows her two things and then has her draw them on the board then she increases the number of objects). This helps her remember what's she has seen and then encourages her to draw (something she hates.)
She also attended Camp Literacy with the Utica School System for five weeks this summer. She entered knowing 2 sight words and reading at a level 0. Five weeks later she knew 30 sights words and was reading at a level 1! It's a wonderful program that we will repeat next summer!
We just went to the Endocrinologist a few weeks ago and found out that all of our daughter's symtoms are related to her IGF1 (Insulin Growth Factor) Resistance. This is a new area that's currently being studied so researchers are discovering and connecting the different symtoms associated with the growth delays. IGF1 affects almost every cell, especially those in muscle, cartilage, bone, liver, kidneys, nerves, skin and lungs.
I included this information for other parents looking for answers. For years we have had all of the symtoms without a diagnosis. We don't care how tall she is when she's grown (estimated to be five feet.) Our only concern is that the rest of her internal organs are getting what they need. We will continue to be monitored by the Endocrinologist on a yearly basis and will wait for more study results to determine our plan of action in the future.
She's happy, in good health otherwise, and more excited about learning than ever before. :)
Dear C., if you would like to sttend my support group for special-needs parents, please email me at ____@____.com and I will give you all the info. K..
Hello,
My suggestion is to add support services this summer to supplement the OT your daughter is already getting. Will insurance pay for speech therapy for a limited time? I don't know where you live but in Shelby Township, there is a place called United Psychological Centers on Van Dyke and alot of my mom friends have been having good success taking their kids there with learning problems and they accept insurance. They have things like Interactive Metronome and other things that can enhance learning. I think they also work with many other things that interfere with learning. The flip side of this is that you can spend alot of time and money and not have the right fit, so I encourage you to be judicious about your selection of what to do. Again, though, you can't be hasty either as it takes time to really evaluate what you are seeing in terms of progress.
I also encourage you to get her outside now that the weather is nice. Naturally work on those gross motor skills at the park - climbing, jumping, going across the monkey bars, rocking on the rocking horse, playing in the wood chips. Bike riding! Playing with squirt guns is great for fine motor skill development as is writing with sidewalk chalk outside. LOTS of movement that includes over, under, around and through! Swimming! Playing in the beach in the sand. So much can be done through "natural" play. It is amazing the gains that can be made when you are more intentional about seeking out those things.
I also encourage you to be sure that you have the right match with the therapy services and teacher/tutor you have - do you feel good about the time your daughter spends with them? Are you seeing improvements?
Getting her classified was POH could be a good thing, however therapy services in school are often minimal at best, though they can make a difference, that won't happen till fall. That classification could also help with making learning accomodations for her.
You are doing a great job! You are a good mom.
First of all - Kudos! Sounds like you are doing everything you possibly can. We all need to be our children's biggest advocates.
My son had the problem of "processing". He still at age 14 has times when things in the brain have a hard time hitting his hands to be written down or just the mouth to just plain be said. He was also in speech for delayed speech. He had tonsils and adnoids removed about age 4. After some testing around age 7, we discovered he is ADD and bipolar. I'm not saying your DD has this (as all children learn at different speeds) but I can tell you if there is a name for why she has the delays, it helps to know what it is.
GREAT on not talking about it in front of her. I would ask the teacher either when your DD is not standing right there or thru notes if she sees anything that would throw up flags. She may just tell you that your DD is doing fine for her age and give it time.
Good Luck - Keep us posted!
K.
My daughter had similar speech problems.. She is in 1st grade now and improving alot. All it took was speech therepy at her school. She still has problems with some sounds. Now she is starting to read. To help your daughter recognize letters play a game with the newspaper. You pick a letter and have her circle it throughout the article. You can even do this with small words and in childrens magazines.
When children get frustrated they can become stubborn and not want to try...
Any advice?
Wait.
You can't force her to develop faster than she is, and poking her face in what she can't do on a daily basis is... well, it's not a nice thing to do.
It is my opinion that our culture rewards people for being very good at what they do well, and our school system rewards people for trying really hard and still being mediocre at what they do poorly.
Capitalize on her strengths, help her see that those are the areas she needs and deserves to spend her energy, and minimize the importance of 'getting good at' things she's weak in. That's what hiring other people is for: we do not live as independent people, but in interdependent communities, where we can hire, say the mechanic and the doctor, so we can focus on being really good at lawn care (and sell it to others) or math.
It is easy to crush a child's spirit, and focusing on what she can't do is one excellent method.
She doesn't need to ever be 'at the same level as other kids' -- she is herself and the very best she can ever hope to achieve in her entire life is to be the very best, only, her that will ever live on this planet. Becoming better at being herself is the only thing that matters. Being like everyone else is only valued within the school system, and that ends before adulthood for most people, whereas the rest of us all have to figure out (often well into adulthood) who we are, and what it is that we do genuinely well.
Hi C.---- Boy do I know your pain. I have a 5-year-old son (kindergarten next fall)who has been delayed with every single milestone known to man! Everything comes slowly...sitting up, crawling, walking, talking, all fine motor skills (he just learned to button!) and gross motor skills. He has been in occ. therapy and phys. therapy for 2 years. Still delayed with speech, so we start speech therapy in a couple of months. Our situations are a little different in that his significant delays are more gross-motor skills related (tough for a boy). The thing that is the most painful is that he is now upset that he is so far behind the other children who can run, climb, have more balance, etc... It's upsetting and has affected him at preschool too. He also is very small (34 lbs). Hang in there with the occupational therapy!! If you don't see much improvement, think about researching other occ. therapists in your area. We had to switch his because the first one wasn't very experienced. All of a sudden his writing has exploded.....writes letters all the time!! I can't believe how far he has come in the last 4 months or so. I am trying to focus on all his strengths (he has so many----hillarious, sweet/cuddly, intelligent, loves to sing & dance, great at pretend/creative play and playing on his own) and not get too stressed about his challenges. I am trusting that therapy will really help. My friend Jenny has an autistic son who has so many challenges, and she has the BEST sense of humor. I know she is so nervous about his day-to-day issues but she always seems to have a sparkle in her eye and something funny or cheery to say when she talks about him. He has made a huge amount of progress, and I'm sure it's in large part due to her faith and positive demeanor. Hang in there! Medicine and therapy are AMAZING these days, and I bet your daughter will thrive.
S.
My middle son is small, about your daughter's size, in fact. He also had a lot of heath issues as a baby. Kids develop so differently at this age.
I don't know if she's delayed but it sounds like she has a different learning style. If she has trouble writing letters, ask her to build it using cheerios or something else. You can work on her motor skill using dry erase board. The markers take less effort than pencils or crayons and mistakes are easily erased.
Good luck!
I think you are doing a great job. It sounds like you have just about everything covered in an effort to help your child. Getting her teacher to tutor her was a excellent Idea! I'm sure that alone will do wonders for her!
I have had the similar problems with my 3 year old. He recognizes his letters and numbers but I cannot get him to attempt to try and write them. He also has speech delay but is improving since staring preschool. He is also seeing a speech therapist and Occupational therapist 1 day per week at his school.
my 8 year old daughter has adhd, learning disabilities and has fine motor skill problems. so i know some of what you are going through. its very hard to deal with this i know but just try to be patient with her.
my daughter is still a little behind but i still celebrate all of her successes no matter how small.
C.,
Have you had her eyes checked by a pediatric eye doctor?
Although my son did not experience any growth delays, he struggled terribly w/ fine motor,reading and writing in Kindergarden and the beginning of first grade. We thought about OT, and had him tutored. He also was in reading recovery (which he was failing...) during first grade. I am a teacher, and kept on thinking LD. He has a fall birthday and and was amoung the youngest in his class. His teachers where of the opinion that he started school too early, and it was a maturity issue. Anyone who had the opportunity to carry on a converstion with him would think he was at the top of his class. He was/is very mature and well spoken. He did not really have "speech problems" although he did not speak much at all until age 2, at which time he all of sudden started speaking in complete sentances. Well, to make a long story short...I read about vision therapy, and how it helps with motor coordination and reading. So I took him for an evaluation, only to find out that he had horrible eyesight! The suprising thing is that he passed SEVERAL screenings at our pediatrician AND at school. He was extremely farsighted (can't see close up) and legally blind in one eye due to a lazy eye (no eye turn)! He got glasses, patched, and now his eyesight is good (with glasses). We were shocked, and he did not know to tell us, because he did not know any different! He caught up VERY quickly in school after he got his glasses. Given your daughters small size, her eyes may be small as well, which can result in farsightedness.
Good luck!
C.,
I empathize. It's as frustrating for a parent to witness this in their child.
BUT you are aware of the delays, and now it's time to let her develop with the therapist at her own speed. You can't push it, and you can't speed her up. Let her develop at her own pace. Why? The accomplishments will seem huge to everyone. It will be a bigger thrill and celebration! Consider the other kids. They forge ahead and learn a lot of other less favorable behaviors. A little delay in comparison is not all that bad when you think about it.
You're doing all you can. Just make every step forward an encouragement. And there are other resources to get her involved with peers (her own age). Churches have kids organizations like Awana (which is very good for interaction and memorizational skills). Think about it. You'll all be fine and remember we're all moms here at Mamasource and there for you when you're feeling it.
Good luck.
I can't give you any advice on the learning delays. However, some of the tips my oldest daughters Pre-School gave me were to use small pencils or break the crayons in half - it is easier for them to control and builds the small motor skills. Also, using play doh to form letters or put some finger paints in a zip lock bag and have her make letters by forming them on the outside of the bag and watching the paint move away from the finger. Another tip to build the fine motor skills was to take a wooden clothes pin (the kind you can pinch open or shut) and have them pick up things like cotton balls or beads with them - no using your hands to help. That builds the muscles in the fingers/hands and helps with those fine motor skills. I would recommend asking the therapist for some home activity suggestions as well.
I can also say that not talking about it in front of her is a very wise decision - Good Job there Mom. We recently learned the hard way when we were in our van with my MIL (and both girls) talking about how our oldest has to recognize 10 letters and up to 5 in numerals for Kindergarten and how she is struggling with that. Next thing I know, my oldest is crying and saying she's just to dumb. Boy did the conversation end fast!!! It's wasn't something we thought about until her reaction, and every now and then we still catch ourselves (although she is doing much better). It's very important, and I think aids our children in more than one way - so again, Good Job there!!
I feel for you--what alot for all of you to handle!! Just treat her normally like you are. It sounds like your doing a great job.
As for size, my kids were that small in K too, and are still small. My 13 yo DD is 80#, and my 10 yo DS is 68#. I tell them that they will like it some day:)
Because she is small this gives you more opprotunity to hold her longer:)
GL:)
C.,
Wow, this must be a pretty rough situation. I am not in any way promoting myself... (after all, it would be a drive for you!) ;)
Have you considered any alternative therapies? I do know that massage and reflexology will help the body to release and help with hormones, including the growth hormone. You may want to check it out.
I do know that I wish I would have checked out a few alternative courses before doing the "tubes in the ears" for my son with the chronic ear infections as I know of two therapies that are proven to work and it is so much more less invasive on the child's body.
Good luck to you!
My six year old is delayed just like you described and awesome!! PM if you want to chat :)
that is what they said about my girl...learning problems. Now in 2nd grade we pushed for testing at a new school. Well she has ADHD. Now i am not saying yours does but maybe it is something that has name and help. She also has speech problems, writing problems. She has speech teacher and teacher said playing with play doh & blocks helps with the handwriting! If the school wont do it find a psycholigist or ask her dr. good luck..let me know what happens if ya want
Hi C.,
My youngest who is now 2, just finally this week made it to 20 pounds. She is wearingan 18 months shirt but the pants we have to pin to keep them up. Its rough. I am stopped regularly by random people to remind me of how tiny she is and how she looks as if she should not be walking.(pet peeve and it angers me). She was in the third percentile most of her life but it went down the last visit. While I was pregnant she was a twin my other one didn't make it I lost the baby in my second trimester. I had a tear so they told me there was a chance of lack of oxygen. (first issue) After my daughter was born she started off having small issues like not being able to poop. Then there was question about her hearing. Then all of the sudden she had a horrible cold. It wouldnt go away. The doctor put her on a series of medications and started running some tests. Then she started losing weight. She lost a lot of weight. She was scary looking and that is not easy for a mom to say. She looked in pain all of the time. Well it was Rsv that just got out of hand. Then after that one lung infection after another.The pooping got worse now she has a ton of scar tissue that causes her discomfort. She was delayed with some stuff as far as fine motor skills but my current pediatrician --we dropped the other one after that nightmare, told us with kids who are sick alot have some delays. For one as parents you tend to hold a sick child more than you would if they werent sick. They sleep more. Things of that nature.
Well now to the growth hormone therapy. My daughter is on a waiting list for an endocronoligist. For a long time they said her lack of growth was because of the rsv and how sick she got. Then it was some of her other issues. She has been poked and tested over and over. Now that she is over two they think its time to test her for the hormone issue. Some people in life are just small and that is fine. But I am going to go through with the injections if that is what is wrong. I have down a lot of research and we feel its in her best interest to do if once again she has a deficiency. I just wanted you to know you are not alone. I know its frustrating. Just a tid bit of advice. Take your little one to be around other children as much as possible. Kids learn more from other kids than they learn from adults. Good Luck, I feel your frustration.
your daughter does not sound that tiny to me..
I was 35 pounds and 42 inches at 5 1/2 - I turned out fine.. just under 5 foot 4 inches..
My 2 year old daughter is barely 22 pounds- she fell of the growth chart at 18 months.. She is fine just going to be a petitie little girl..
people ocme in differnt sizes.
Hi C., I would advise you and your husband to think about homeschooling your daughter. Being homeschooled, you could work at her pace and not feel like you have to catch her up with her peers. One of the things that I've learned in our 7 years of homeschooling is that each child learns at his own pace. I have two that have taken longer with learning to read, and one that starting reading early. Being homeschooled means that you can take the time that is needed on weaker subject areas and breeze through more easily mastered areas. I have a seven year old who is still struggling with letters and reading (she has also had big speech delays), but is really good at arithmetic and science.
Michigan has some outstanding homeschooling laws, so it would not be hard to start. Another great thing about hsing is to be there with your child when they "get" something and to be able to share in that joy at that moment. Let me know if you'd like more info. :)
Dear C.---I will say my prayers for your daughter. Have you examined her nutrition at all? It is so important, especially for someone who is experiencing health issues. She may need to eat more fruits and veggies 'than the average bear'. (I'm dating myself with that one!) Be sure she gets plenty of whole grains and beans and legumes as well. Stay away from processed foods. If it is hard for you to get the recommended servings each day, I have a number of strategies and resources available to help with that. I am a wellness educator and have a BS in home economics. Feel free to contact me if you have any questions. Good luck. D. ###-###-####
C.,
Hi, my name is E.. My daughter went through the exact same thing all the way down to the open heart surgery, she was in speech until she was 13. Hang in there, one day everything will click with your daughter, I promise. It was a long road but it does happen. Take a deep breath and be patient.
