When you have a child with developmental delays, it automatically means a different life than what you dreamed of for you and for your child. But there are some things that no one really talks about. We talk a lot about their lack of talking, walking, hitting milestones, ability to care for themselves, but the day-to-day stuff often gets left out of the picture. When you have a neuro-typical child, they often go through “stages” and you know that in a few weeks or months, the stage will pass and things will return to normal. When your child has developmental delays you have never-ending stages. Well, maybe they do eventually end, but they seem like they never will. These are the things no one told me about parenting a child with developmental delays.

– Life Over C's What No One Told Me: Parenting a Child with Developmental Delays. As a parent of a special needs child we talk about so many things. But these are the things no one prepared me for.

I’ll be totally honest here because that’s what I believe in being. I’m not going to sugar-coat. I have three neuro-typical children who have very unique abilities and personalities. Nothing prepared me for the things I would go through with my fourth daughter.

And my daughter, who has an IQ of 58-60 has what is considered a moderate developmental delay. There are kids and parents out there that are dealing with much worse issues than we are. Those parents deserve a huge hug!

Today I’m laying it all on the table for you. I usually try to keep things very positive when I write about special needs, but quite frankly, there is a lot of stuff that doesn’t feel very positive and I think people need to know that too.

Things no one told me: Parenting a child with developmental delays

No one told me that I would stopping my 4-year-old daughter from playing in the potty several times a day for weeks on end.

No one told me that I would changing diapers and cleaning up leaky diaper messes from my bed day after day well past her 10th birthday and that the messes would become more frequent because I wouldn’t be able to find diapers that fit well.

No one told me that I would be struggling to keep clothes on my daughter while we were out in public and she would randomly start taking them off.

No one told me what it would feel like to try to decipher what my daughter was asking me for every time she spoke and to act as her permanent interpreter for new people.

No one told me that I would be removing my screaming preschooler from the church sanctuary because the person she usually sits with while I’m on the praise team couldn’t be there.

No one told me how tired my arms would get from carrying a 36-pound child through the store while trying to push the cart because she won’t sit in the cart and can’t be trusted to walk beside me while we shop.

No one told me how helpless I would feel when my daughter was crying and whining, but couldn’t tell me why.

No one told me about the extended sleepless nights that would be forced upon me for years on end and how I would try to hide it from people because no one wants to hear how tired you are after that much time.

No one told me what it would feel like to have pieces of skin scratched off.

No one told me that we would seem to achieve success in any given stage, only to have her regress while she worked on mastering a different skill.

No one told me how often I would go from feeling like we had it “all together” to bursting out in tears from frustration and stress.

No one told me how hard it would be to take care of my other children, not just physically, but emotionally.

No one told me that I wouldn’t enjoy being around babies again because I was so emotionally drained from our own baby-stage never ending.

No one told me that seeing pictures and videos of other babies whose skills have surpassed my preschooler’s would make me so angry.

No one told me how hard it would be to listen to other people “explain away” her problems saying that because she’s mastered a new skill, she must be cured.

No one told me how frustrating it would be to have instructions fall on her non-absorbing ears over and over and over despite her ability to hear and comprehend.

But most of all,

No one told me that amid the frustrations, the exhaustion, the anger, I would have such an intense love for her.

These are the things no one told me about parenting a child with a developmental delay.

Do you have something to add to this list? I’d love to share the joys, the hurts, the frustrations and the victories with you!

– Life Over C's What No One Told Me: Parenting a Child with Developmental Delays. As a parent of a special needs child we talk about so many things. But these are the things no one prepared me for.

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Kim Staten Owner and Curriculum Designer
Kim Staten is a mother of four children ages 20, 19, 16, and 12. Kim has taught at the preschool, kindergarten and early elementary levels for 16 years. With extensive experience working with special needs children, including her own children with special needs (Rett Syndrome, autism, anxiety, and ADHD), she creates hands-on curricula and activities that are great for working with children of all abilities in the classroom and at home. Hands-on, accessible activities are her passion. 

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  1. Thank you so much for reminding me I am not the only one feeling this. My son is 19 months and on the pathway for an autism diagnosis and I’m really struggling seeing other much younger children surpass him with milestones etc. I feel like punching people who constantly tell me he will get there in his own time although I know it is partly true. I don’t know why I am so angry. You’re so right about the unbelievable love you have for them though it’s so overwhelming sometimes I just want to wrap him up in cotton wool forever

  2. As I sit here putting my 2 1/2 year old to bed, because he won’t go to bed without me, I’m in tears because someone actually gets what I go through on a daily basis. I love my son to death but my goodness is it hard. He’s my first and only child. I have him through the blessing of adoption. Some days are better than others but I feel so helpless not being able to “fix it” when he’s so upset and cannot verbalize what he needs. Countless therapists give great advice but it still seems like something is missing. People don’t understand how tired I am all the time and that he isn’t just “a brat” he really struggles in social situations. Even a simple trip to visit family can be overwhelming not to mention going to a grocery store.

  3. I feel your pain. My child has language disorder. He stutters and has borderline intellectual functioning. You’re right there are parents who have it worse. God help us and our children.

  4. No one told me about the fits of rage that come with not being able to communicate effectively or from just being tired and the short day being too much for her handle.

  5. Has your daughter been diagnosed with anything? My daughter is 2 and has only been diagnosed with Global Developmental Delay so far. One genetic test was done, but it was normal. I now await another genetic test. I go through phases where I think she’s doing so well, and then I see kids her age and it just breaks my heart. She is in all therapies, OT, PT, and ST. We celebrate the littlest things she does!

    1. Yes, our daughter was diagnosed with Rett Syndrome several years ago after a genetic test. They told us at the time that genetic tests only come up with an answer 40% of the time. Blessings and prayers for you!

  6. Also, forgot to mention, I never thought I would ever have to tell my child to “get the dog lips out of his mouth“….yes, my GDD son had pulled our yellow lab’s top lip out and was biting on it with his own mouth. Poor dog was just sitting there whimpering. 🤦🏼‍♀️🤦🏼‍♀️🤦🏼‍♀️

  7. So glad you wrote this, I was needing to know other people are going through the same struggles. I have an almost 4 year old GDD son. I also have an older son with no delays. Life before my second son feels like ages ago and a more happy time.
    What you wrote describes my life exactly. I read the same books to my son, repeat the words over and over. He sometimes gets in and the next time has no clue. I literally feel like my heart gets broken on a daily basis. Some days I don’t know how much more it can take. I wonder why me God? I know there is a reason and I do love my little guy with all my heart.

  8. Healing and comforting tears as I read this. Thank you. No one else would understand that I want to lie to strangers when they ask, “how old she is?” I hate that I’m always wondering what are they thinking, how are they judging and trying to stay positive when really I don’t know how the extent of her delays are going to effect the rest of her life and mine.

  9. My youngest daughter have GDD her IQ are extremely low she is 7 years old now. At first it so hard to accept that my daughter have delays in everything. I cried and feel so depress because I know when I gave birth shenis normal and health and suddenly she was assess to have GDD. At 7 years old I’m having problem when she get angry she’s shouting and even hurting me. I just let hetI to express her angry emotion because sh e becoming frusyrated because she cannot understand what ever explanation, even I told her many times. So what I’m doung when she is calm and I talk to her not to hurt me but she is still hurting me snd shouting at me. Her service from DCSI/NDIA was stop becsuse she turn 7 years old. We are so frustra ted when she cannot avail all the service that she needs when we know that she still needs it until she become adult. I’m worrying what will going to be her future if she can reach to study university.

  10. My 8 year old is developmental delayed with speech issues..No one prepared me for her panic attacks and anxiety when it comes to going to ANY Doctors office.. we cant even do a check up without her going into full panic mode screaming at the top of her lungs if the doctor even talks to her.. I cant even take her to the dentist because of the fear and torment I put her through just taking her there.. she needs her ears checked for hearing and when we went last year….it wasnt successful.. we couldnt even get her to sit still or stop screaming for the ENT to look properly in her ears.. how am I supposed to get things I need done for her school to have the info they need for her vision and hearing to keep her recieving services at her special needs elementary school? I try and explain to them the torment we go through when we take her to those places.. I seem to get a lot of judgement when I tell them I just have not gotten it done.. night after night she comes to mine and her fathers room and wants to sleep in our bed, I direct her and direct her back to her room and after the 20th time I dont even feel her climb in my bed due to exhaustion..glad Im not alone!

  11. I NEEDED THIS TOO! My little girl is 8 and has developmental delay. Nights are impossible..she shares a room with her 2 year old sister who has no issues sleeping through the night but my 8 year old is always coming back to mine and her fathers room after we lay her down for bed at night! Its like clock work! I adress her and tell her she needs to sleep in her bed but she wants to sleep in ours.. she comes tnroughout the whole night and by the 20th time I dont even hear het crawl in my bed. I find myself asking those same questions as well and compare her and I feep so bad..but I would not change her for the world either!! Its hard..

  12. Nobody told me how isolated I’d feel from the outside world because I can’t identify with other moms whose kids are able to do x, y, and z because my child still isn’t able to walk or talk. Nobody told me that I would cry multiple times a day thinking I’m a bad mom because I can’t “figure it out” with my child. Nobody told me that I would feel so overwhelmed and sad thinking that I will never be able to pursue the career I had envisioned doing. Nobody told me that childcare would essentially be nonexistent for us because they can’t cater to his special needed care. Nobody told me that my life would basically consist of multiple therapy treatments weekly. Nobody told me that he would need OT, PT, speech therapy, and feeding therapy. Nobody told me this would be the most challenging stage in my entire life thus far. Nobody told me that I would never want to leave the house. Nobody told me that the option of getting your child socialized by attending church and my son going to Sunday school during the service would not be an option for us because of how our church separates their classrooms and child care (newborns, then crawlers, then walkers, etc) and since my child isn’t a crawler at 14 months and not a newborn there is no place for him to go, Nobody told me how much my heart would heart thinking about my sons future. Nobody told me how much love I would have for my son. Also, nobody told me how humbled I’d feel raising a child with developmental delays. The days are so hard.

  13. IM SO glad others are still commenting..this is all new to me, he’s been in EI since August last year and receiving his therapies twice a week. I participate in Every appointment. He will lose services come June and i know he’ll be lost without them. IVE Already found special pjs to prevent undressing and discarding diaper. I have to say that whole it takes a village, does not apply to me. I do this alone. 100% and i have a 13month baby girl too. I have zero help from anyone. We only see his therapists every week. I’m so exhausted. Trying to carry my big guy and a car seat ….he doesn’t help support himself up, hold on. I can’t put him down without him wandering around… i can honestly say it makes me wanting to go anywhere nonexistent. I get them back in the car and i have to just sit and cry for 5-10-15 minutes. This is so hard. … my bodyis coveredin bruises. Hes gauged wood on his crib..it’s falling apart. He’s just figured door handles out a bit, any advice on what to donto keep him safely inside? i rent 🙁 or a bed situation? Another crib or alternative??

    1. Hi Tera, Hugs to you mama! You are doing a great job! Is there a reason he will be losing his therapies? Even after aging out of Early Intervention there are other programs available to help. That might depend on your insurance and the facilities available in your area. Going out can be difficult and we do depend on electronics to keep her calm while I do things like grocery shopping. I would also check to see if there are some day programs or respite care available in your area. Check with your DHS department as sometimes there are waivers available that provide money to pay for respite care.

  14. I have an adopted daughter who is now 33 years old. I started as a foster parent when she was 3 I knew she would have some challenges in her development but not to these extremes she is short for her age like the size of a 8 year old she has her diagnosed with CP, hypothyroidism and developmental delays she is nonverbal and in pull ups that I get from a medical supply co thru her insurance she has become very aggressive with swiping things off beds counters dressers and scratching she is now absent from her day program because she has started to remove all her clothes what did you do to keep your daughters clothes on in public thank you for your blog it is very encouraging to know that I am not alone in my situation

    1. Can you put something like a swimming suit or leotard under her clothes, so that when she removes her outer layer, she still has something covering her? Or a layer of tight clothing that is difficult to remove, so that someone has time to distract her before she can remove it? If she still does therapies, I would talk to her therapists about it. There are vests that can be closed in the back that would be difficult for her to remove. And they may be able to help you find the trigger that is causing the difficult behaviors.

  15. Thank you for putting this out there! I have a now 12yo son who is (after age 5 it changed from developmentally to intellectually) delayed. Potty training is STILL a work in progress. While some days are great, others are very frustrating. Some days he seems very much the 3-4 yo old mind, and then there are moments of “clarity”that seem he’s on target for his age. He’s been in public school, with mostly special needs classes (mostly with the same kids since he was 3!) but with some integration for an hour or two per day. But, as he will be switching schools and going to middle school next year we are considering keeping him home and schooling him. Just not sure and sitting on the fence with that. He’s the sweetest guy you could ever know….but, there are definitely days we sit and wonder what life could have been like.

  16. I enjoyed how you didn’t sugar coat life with a disabled child. My daughter has cerebral palsy. She’s 12 almost 13 and she has the mental abilities of a 5-6 year old and has a lot of problems with her compulsive behaviors. She wants to do, watch or do the same things over and over. I don’t know how to say this but unfortunately she looks “normal” so most people who doesn’t know about her condition aren’t very forgiving. My nephew has autism and my sister has same problem. Anyways she has a lot of ticks and they can be very noticeable. Unlike the other 4 boys in her class she’s vocal and knows she’s different than her peers. She wants so much to not be “special” and just be normal. It’s hard because she has a very hard time making friends. The other kids not in her special ed class are not usually openly mean but they don’t want to be her friend either. I don’t know how to help. Anyone out there have any suggestions?

    1. My first recommendation would be to talk to her teacher and see if there is a peer mentor that could befriend her. It’s so hard for our kiddos when they realize that they are not like everyone else. It also sounds like your daughter is in a self-contained classroom which doesn’t provide her time to interact with her peers. We had to push hard at the beginning to keep our daughter in her ‘least restrictive environment’ because people hear the words “Rett Syndrome”, Google it and then assume that she can’t talk. You daughter should, at the minimum, be able to participate in specials, lunch, gym, and breaks with her peers rather than in the self-contained room all the time. For our daughter, that makes ALL the difference. Once she was put in a regular classroom with her peers, she became so much happier and she has lots of friends.

  17. No one told me the countless nights l spend wondering where it went wrong. Did l cause it? How l have changed my familys life forever and the guilt associated with that. Will l leave her to a cruel world that she can’t fend for herself in? It’s so draining and yet l feel like my adrenaline activates every 5 minutes.

    1. The adrenaline rushes are tough for sure! I hope that you can find some good support for you and for your family!

  18. No one told me that the things I once had a passion for (supporting women through pregnancy/labor/post partum/breastfeeding) would now bring me to tears of saddness over missing those moments with my daughter. No one told me that I could have such strong yet differing feelings about the same exact thing…I see a new baby happily nursing and I am so excited for that mom and child yet I hurt so deeply for what we missed.
    No one told me that the day to day emotions would change so drastically.

  19. I found this blog post this evening when I Googled for what to do when you hate your developmentally delayed child. I appreciate the fact that you were honest about things that you said things that I have felt and I was with you right up until the intense love. Maybe it has to do with having done this for 25 years versus you’re having done it for five or six. All I know is that it hasn’t gotten easier regardless of what people say, and I’ve reached a point where I feel like it’s going to have to either be he leaves or I do. I hope you never reach that point

  20. No one told me..
    That she would hurt me constantly,gouging my eyes,throwing bottles at my head,pulling my hair,scratching my face,biting me,and pinching.
    She seems to enjoy it so much..I’m actually lead to believe she doesn’t love me at all…that she only needs me.I am heartbroken.
    But yet I put a smile on..give her my all..and push through.

  21. Some days I feel like such a failure….my son is almost three, he uses the potty great but only if you take him. He’s never once told me he has to potty so it’s a constant struggle. We have his developmental assessment coming up soon,his pediatrician believes he’s autistic. I feel so lonely and so guilty. I’m ashamed to say I’m ashamed, I haven’t told my friends nor majority of my family. I guess I fee like it’s my fault. Most days I cry alone in the cry, I try to hide my fears from his father, I don’t want him to feel what I feel I guess. He knows so many great things, he can name every shape and color. He loves to be chased and go on slides but socially he’s on the level of a 1 year old. I’m glad I found this blog, it’s refreshing to hear I’m not the only one. Thank you

  22. hi there. After dating a mother, with the child of another man, for two years I have become very frustrated with her childs development and progression. I have no young children in my family so being around her boy from the ages of 18 months to 40 months is my first experience being around babys , toddlers. The boy turned 3 at the end of January, it is now the end of April. He does not dress himself at all, he does not clean himself or brush his own hair or teeth. He does not have any communication skills. He will stand in the kitchen and wait for her to get him a cookie.or start making his supper. He wont point or even attempt to ask other than a tantrum if he doesnt automatically get what he wants. He cant point to a shape, colour, animal, number or letter if asked.The only words he uses is “ya” , “wow” , “go”. The words are never used in proper context. The boy is very picky on eating. I have never seen him eat a fruit or vegitable. She just got him off the milk bottle before Christmas. Almost every night when I see him during dinner she feeds him smile fries and battered chicken or battered fish. He mostly just eats the fries. After months of questioning her parenting choices and bringing up the fact that he shows many signs of autism , she gave in and toom him to a family doctor. The child apparently has global developmental delay. Being just a boy friend i feel i dont get the full story. I appreciate you writing about your experiences. Are there any possible reasons for why this boy is delayed ? possible lack of nutrition? Lack of engagement in arts and crafts? Too many hours infront of the tv? I become so frustrated when I see other children doing this that he cannot. It frustrates me that we cannot enjoy our weekends because we cannot take him anywhere, he follows zero direction. Can global developmental delay be overcome?

    thanks so much.

  23. I have a 22 month old boy, with global developmental delay, his feeding is affected and speech. . . He does not say a single word, to communicate is hard. He is active and can walk or run and falls, but I get the medical team telling me why I still can’t set a routine for him. He eats purée food gets hungry every 2-3 hours and this effects his night sleep and naps in day. Some days although he is active for longer period of time during day he still won’t sleep through out the night. He always has broken sleep which make me as a mother exhausted as he has a sibling 8 year old daughter. I try my best with son but feel let down by the medical team that are meant to support him I feel they are just having a little dig rather then looking on the medical side. Is there any advice you can give on setting up routine because everyday is different and difficult with my boy.

    1. I have a 4 year old daughter diagnosed with Global Delay. She also won’t sleep through the night and most oftentimes have 1-2 meltdowns nightly. I don’t know what to do. It’s making me so tired as I still got to office during the day. After a meltdown, she’s back to normal, she just asks for milk like nothing happened. I really don’t know how to respond to these meltdowns. I truly hope it’s just a phase…..

  24. My daughter is developmentally delayed in every way. I was able to potty train her at 2 1/2 and this surprises every one even doctors and I didn’t understand why till I ready your post. I knew I had to parent differently my since my family doesn’t understand that my daughter has a speech impairment. And she on does one to two words she’s almost 4. She now is so hyper at bed time and I don’t know what to do. It’s so tiring. And I really am still learning about how to help her. There are days I have no patience which is so hard. And my family doesn’t understand. ?.

  25. We adopted our daughter 8 months ago just after she turned 15 years old from an orphange.Her adoption profile was complete and there were no major issues that we had to deal with or so we thought! The first month went well,then she started wetting her pants during the daytime,and we thought it was just from her getting adjusted and being a little nervous,so we let it go.Then a short time later,she started wetting her bed also every night! We got her the size 8 pampers diapers for teens,to wear during the day and at night.She liked wearing them and we were fooled,as we thought she felt more comfortable and secure in them.She started wetting thru the pampers,so we got several pairs of adult size rubberpants and had her start wearing them over the pampers during the day and to bed.This was working for a few months,then she told us she wanted cloth diapers to wear as they were more comfortable.again we were taken in,we got her the cloth diapers and diaper pins and she started wearing them with the rubberpants over them,24/7.Then the one night i got up and went into check her diapers and saw she was sucking on a pacifier! I didnt know where she got it from,but i took it out of her mouth.As time went on she started acting more babyish and even started using the pacifier during the daytime.We thought at first that her wearing the cloth diapers and rubberpants all the time was causing her babyish ways.She became more and more like a baby and we got to wondering if we were told all of the truth in her profile.We had our attorney get all of her records from the orphange and were shocked to find out that she wore diapers in the orphange and was put in with the infants and toddlers because of her babyish ways!It finially dawned on us that she was delibretly wetting so she could wear diapers! We were disappointed and almost sued the orphange for not telling us the whole truth.She is now still wering the diapers and rubberpants 24/7,using her pacifier,and now drinking from a baby bottle,and acts like a baby! what a surprise we got!!!

  26. Hi My name is Lisa , my son has GDD he has just turned 12 and started high school , the children where teasing him telling him to speak normal , this just killed me inside , my son is a big boy, who cannot open packages or do up buttons or climb, which a lot of people just don’t understand now his starting to have ticks , I’ve been waiting on the waiting list to see a specialist it’s a joke as I can’t afford private health insurance so I really do relate to this story

  27. Wow, I can totally relate to every word/situation!
    Appreciation is there, for making this Foster Mum feel a lot less alone!

  28. after my 3 year old getting kicked out of 3 daycares the Dr. finally referred him to get evaluated, he was diagnosed with Developmental Delays and behavioral problems and now goes to a local elementary school that has special needs classes for 3 year olds and up. Anyone reading this, look into it as they have 3 special needs teachers in each class and he has progressed a lot in the past couple months, he still isn’t using the potty on his own but we are working on that and his speech is getting better. He still has his moments separating from me and has hit the teachers on occasion. I have been so frustrated with parenting until I began to learn about why he was acting this way. I hope for you all that there are resources like this for you to help your little one. This school he goes to has saved my sanity and has abled me to continue working a full time job without getting calls to come get him every other day because they didn’t know how to handle him.
    Many blessing to you all….

  29. No one told me how angry I would still be at my obgyn after 5 years because she missed his diagnosis in utero and it’s flipped my word to the dark side, and how terrible I feel for feeling this way. No one told me that someone who used to love kids so much now hates being surrounded by normal healthy kids. No one told me how broken id become.

    But also no one told me how much I would cherish each and every milestone far more than other parents, and no one told me the intense love I would have for this complicated, difficult, and beautiful child.

  30. This was a perfect post …:( for a mom nobody told it would almost be impossible to keep a diaper or clothes on my 3 yr old child who has intellectual disabilities + a million other dios. Thank you for sharing…
    P.s I was told by my regional worker some insurances will cover diapers for children not trained by around 5 years old…for all you moms out there that need to hear that can be an option call your insurances and find out! Good luck

  31. No one ever told me that when my daughter with developmental delays would become a teenager she would still experience the normal teenage ideals, but not really understand the repercussions that came along with it. My daughter is 19yo and this has been the most difficult time in our lives. My husband and I try to understand how she feels, but become frustrated as we find ourselves repeating the rights and wrongs to her every month. We have the same argument about rules, boys and whats appropriate inappropriate. How do I get a 19yo with a mindset of a 10yo to understand that there are rules she has to follow and the things she says to us are hurtful. She does not understand the extent of being taken advantage of from her so called school friends. I find myself hurting these days more than ever and try to find the answer as to when she became so mean and hurtful. How as parents do we deal with issues that normal 19yo would understand to a child that will never understand.

  32. I am a mother of two boys 11 months apart. This article gave me much relief, it has nailed all I am seeing and experiencing. I feel I am finding my youngest is delayed by what seems almost exactly 1 yr. Though it is hard to define that, but everything his communication his abilities socially and physically and mentally show. The hardest part was having the expectations of him being “ahead” because he would learn so much, so fast from the 3 yr old. I have not had him evaluated, and my husband seems to not be worried at all, saying I worry too much. However after being a home momma, your honesty truely gave me comfort knowing I’m not crazy and over worried, just aware. I will pray for you and give thanks for your raw description, but mostly the love we still have in our concern and walk with these little treasures. Thank you

  33. I have a 2 year old daughter who is developmentally delayed, low muscle tone, and is visual impaired. I have can never find anyone who has been in my shoes before with their child. She is constantly going to therapies and having so many tests done.The question I really have is does it get better? Will my daughter get over this? Will she grow up normally? Can she have a family of her own? Will she always have challenges? These are the questions I ask myself every day. I have shed so many tears daily but when I look at her she is just the happiest little girl. Someone please give my some good news or advice.

    1. Crashonda, not sure if you still check this but this sounds like my daughter when she was 2. It’s tough, so I can relate. My daughter is 5 now and definitely doing better. If you want, give me your email and I would be happy to speak further.

  34. No one ever told me how much I would dislike seeing other typical kids… and it’s usually the ones that are 1 years old and learning to walk…my son is 6 1/2 years old. No one told me how alone/devastated I would feel when my friend told me how lucky I am to not have to chase after my son. No one told me how to plan a retirement for three people. No one told me that I would hope my son passes away before me — we don’t have family support for someone to care for him after we are gone. No one told me how lost I would feel when the professionals don’t know how to help him. No one told me how helpless I would feel when he cries and he can’t tell me why. Nobody told me how happy and devastated we would be, at the same time, to receive a diagnosis after years of wondering. Nobody told me how fast I would age, have back and shoulder injuries. Nobody told me how much fight there would be for school services and getting people to believe my son CAN learn.

    No one told me how hilarious it would be when my son recognized & giggled at his own fart in the tub! Nobody told me how much joy we would have when he learned to push his wheelchair, creating so much independence for him. Nobody told me how much relief there would be when you finally find a dr that will not only look at him now but anticipate needs of the future…someone that can have the difficult conversation but still find a way to be hopeful. The Dr that will talk TO your child even when they don’t talk back. Nobody told me how much happiness we would have despite the dreaded list of challenges your child and family will go through.

    1. No one told me how much I continue to cry year after year, while aging more rapidly than the general population and still have ALL the love in the world for the daughter I have who is 14 years but is being assessed at the age of a toddler. No one told me that there could be years of regression after years of so many gains so much that all the work we all did felt like it was for nothing. No one told me that doctors and so many professionals who claim they know these children so well would know less than I do as a parent who lives it everyday. No one told me that I would feel so much pain and isolation yet feel so much love its painful to think of my life without her.

  35. Just a perfect article! No one told me
    About the never-ending grief. No one told me there is never a happy ending. No one told me I would mourn the years I missed with my neurotypical kids at the same time grieved the present and the future. No one told me that family does not care. No one told me how hurt you would be at God. No one told me that there is nothing, not any pain in life compared to the wasting away of the lives of the caregivers. No one told me there would be no time for recovery of anything; health, finances, spiritual, relationships. No one told me. I would not have listened.

  36. Hi I understand everything you have said, it’s not easy my daughter is 14 and is the mental age of 3 to 4, still in nappies, has noise sensitivity too. I feel like screaming sometimes. It frustrating stressful, isolating, I hate my life because I don’t have one she had it now.

  37. Thank you so much for this. My 3 year old daughter was just diagnosed as “developmentally delayed” and will be evaluated again for Autism in 3 years. I am having such a hard time dealing with this; blaming myself, worrying about her, etc. I love her so intensely and just want her to be happy. I have a 10 month old son and it’s so hard watching him surpass the level of skills she had at that age. I’m so glad he is “on track” but it just pains me for my daughter. In the future when her little brother surpasses her, how will she feel? She’s due to start preK early in September and we are taking her to Vacation Bible School now. I wanted to see how she would interact with other kids her own age. Within the first five minutes, she was clinging to the other children (not knowing boundaries), trying to run out of the room, yelling….And the other kids her age, who were all intently listening to the story, began to look at my daughter like she was crazy. Kids have no filter. I don’t blame them but it hurt me SO much. I took her to the younger group of 1 & 2 years olds and got my husband to sit in because I was holding back a breakdown. Went for a drive around the block and cried so hard for my baby. She didn’t notice the other kids but what happens when she starts to notice? What happens when she begins to understand that she’s a little ‘different’? My heart was breaking for her. We have our good days and our not so good days but I wouldn’t trade her for anything in this world.

  38. im the father of a 6 year old who is non verbal and legally blind.she doesnt walk.shes a beautiful little girl and we love her more than life itself.i can relate to all of these comments,diaper issues,clothes,feeding.its really hard sometimes.its 3am and shes been crying off and on all night,its very hard not knowing how to help her.thanks for allowing me to jshare.

  39. No one told me that parenthood would be this way. Having tried for years and through IVF had success, our little girl was starved of oxygen at birth and now she is 3 yrs 3 months old with a mental age of 23-26 months.

    No one told me that I’d get jealous of my neighbour and friends children both younger and older excelling far quicker than mine.

    No one told me how I desperately want to keep my wife positive for her future but with the dark cloud of brain damage coming more into our reality every year like a curse.

    No one told me how insensitive other parents can be and try and compare your girl to theirs.

    No one said how hurtful it would be when children 15 months younger speak and understand better than her.

    No one said how intensely frustrating it is to try and teach and help them learn only to find the next day she has forgotten everything.

    No one said how much I’d celebrate her pointing out a monkey in a book and how proud that makes me.

    No one said how I would wipe away a tear of joy when she tries so hard to sing twinkle twinkle getting all the words wrong apart from the last one’s.

    No one said at 445am and she comes in your bedroom to say dada wake wake how proud you are of her putting that sentence together.

    No one says how precious it is to keep positive when it’s so hard in this competitive social media world we live in

  40. Wow! I cannot thank you enough for this. I am a foster parent to our sweet girl that we have known since five days old. She is now 32 months going on 15 months. I have to say I’ve been feeling rather overwhelmed at times as of late. Recognizing it is I with the issue of coping or lack there of, in desperation I turned to the net only to find that you described exactly what I have been feeling. Sometimes we just need to know we are not alone and someone else gets exactly what we are feeling and thinking. Then in the midst of all of these feelings and emotions is the question of what does the future hold for this wee girlie?

  41. I just want to say, Thank you! Thank you for writing this, it was the validation I prayed for and needed when I would feel the lowest. It’s so easy for people to judge who have not walked the road that parents with special needs children have walked. I appreciate that you didn’t “Sugar Coat”. I feel information like this needs to be raw. Sometimes we need to rant it’s very therapeutic, and it’s ok to admit we are overwhelmed and broken. This is how you heal. I have a daughter with autism, she’s almost 6. A lot of the things you go through, I’ve been through with her or we’re still going through some of these challenges. My heart ❤ and prayers ? are with you and all the parents on here.

  42. No one told me how hard it would be to wash underwear many times a day, because I couldn’t afford anymore diapers for my 4ft tall 54lb 4 year old Autistic son. And no one told me how much JOY I would feel when at almost 5 years old, he FINALLY pooped in the toilet!!! (literally jumped and cried!)

  43. I have only one child and he has Autism.
    No one told me that I would be subjected to frequent physical attacts, having to explain my broken nose, black eyes, or huge scratches on my body.
    No one told me that the police would show up at my door because my neighbors heard yelling and screaming, and having to prove that I am not hurting my child, he is just having one of his meltdowns. Then my child would walk right up to the officer and tell him to ” Get out of my house, RIGHT NOW!”, this was at 6 yrs old.
    No one told me that suddenly, all of the aggression would simply disappear and by age 7, my child would turn into the sweetest, kindest, most caring person I’d ever met.
    No one told me that my child’s friend’s mother would be jealous of me because at 17yrs old, we have the most amazing relationship, I still get a kiss on the cheek every time either of us leaves the house and he tells me he loves me in front of his friends.
    No one told me that through the all of the struggles that my child would be so successful.
    But you know what I have always told everyone?
    I wouldn’t change one bit of it and I’d do it all over again.

  44. I am a special needs daycare. I deal with so many of these issues every day, and my heart goes out to all the moms and dads. You are my heros! One thing I haven’t seen mentioned is how hard it is to find quality daycare. ADA means that your s/n child can’t be refused, but so often, being accepted into care doesn’t equate with quality care. You guys have it tough and I so admire you.

  45. My daughter is 4 with “mild” autism and dyspraxia. She’s not even close to where her peers are. I’m so frustrated with her. I wish I felt that intense love, but I feel so much anger!

  46. No one ever told me that once she did reach a milestone it would mean THAT MUCH more. Parents of “average” children just don’t understand that kind of love. Something we have and appreciate so much more!

  47. No one told me that having her would destroy my health, or that I would become her primary doctor and therapist and medical researcher because with a rare syndrome, the only people who actually take a creative interest live in other countries.

    No one told me that finding a supplement regimen that helped her and ended up helping dozens of other children with her syndrome develop language and improve their overall health would be one of the most rewarding and proud accomplishments of my life.

      1. When I wrote this article a few years ago, we did not yet have a diagnosis. We have since learned that our daughter has Rett’s Syndrome.

  48. Diapers.com sells Pampers Size 7. It’s their largest size. We squeezed our daughter into them until she was over 50lbs because they didn’t leak. And they came off easier than pull ups for messes.

  49. Yes! Just yes! I really needed to read this today. I have a 6 year old son with HFA and severe ADHD. My 2 year old has a lot of sensory issues and most likely ADHD as well. My biggest barrier is that I just can’t seem to find enough time to handle both of their issues, which leaves me frazzled and impatient on a daily basis. They are both so needy that I feel like I am in a constant state of 1 step forward, 2 steps back and never accomplishing anything. I feel like I am failing on a daily basis as I struggle to maintain the basis daily tasks.

  50. All of this is so right on! No one tells you how hard it is to not to want to just keep your kid in your little bubble so you don’t have to deal with others. Or how some family can’t understand what developmental delay is because their children meet all goals! how lonely and how your heart hurts at each Christmas or Birthday when you can’t come up with anything to buy because he can’t play with things like the others. Or how their kids screaming can cause your to have a complete melt down. And that even thou all kids are special and a gift from God that our healthy children need to be taught that some kids are different and they need to set examples by treating these kids as one of them. It’s seems the worst to deal with are adults!!!

    1. I totally agree, my son is 14 now , he is the sweetest. My heart aches reading these posts because I think how over the years, not knowing what is wrong and being judged that I need to discipline him, him not being invited to birthday parties , not included in activities, even a year ago, young people getting up leaving him at a table…always on the outside. When being little I would look at other children and my eyes would tear up looking at him and he was in his own little world not making contact. Now he talks to everyone and wants to hug everyone, we have to talk boundaries. He’s a joy.

  51. Thank you for posting this. I can identify with your pain, frustration and all-consuming love. I am not religious but am so grateful each day that my wonder of a child chose me to be her mother.

  52. No one told me these things. I learned on my own. I am still learning. My child is now 25 and no one told me I would be jealous of friends whose 25 year old is giving them their first grandchild while mine prefers to be left alone to watch cartoons. No one told me that I would cry myself to sleep when I see the hurt in her eyes when a waittress doesn’t understand her order and I have to order for her. But no one told me I could love so deep and so much. I love both my children. But the love I have for my 25 year old Kala is the purest I have ever known.

  53. Wow almost all of these hit the nail on the head for us! My son was a 24 weeker with the worst brain bleed. I am crazy about him and he’s my only child, I can only imagine how difficult it would be to have other children on top of his needs! He’s 3 now and very high functioning (in my mind) and we’re grateful for his health and those things he is doing, but that doesn’t make the delays he does have ANY easier, thank you for voicing these! I feel better knowing somehow I’m not alone!

  54. This article sums up my life with a child with a disability. It’s great sometimes challenging but I wouldn’t trade it for the world even though I am so tired all the time and her vocabulary is a guessing game to understand her. It’s just something no one will understand until they have a child of their own

    1. Very true! We just recently enrolled our little girl in a Special Education Pre-K and it made me realize how many people can’t understand her. It’s not as noticeable to me because I’m learning her language…

  55. My daughter is nine and severely delayed, my son was born with no Tibia in both legs. Just recently we were trying to count how diapers I had already changed. It made me feel hopeless looking towards how many I have yet to change.

    1. I totally understand! I’ve been looking into cloth diapers again to see if we could make another go at them… Praying for you!

  56. I just stumbled across this by accident and am so glad I did. Thank you for expressing the very things I feel seemingly daily with my almost 5 year old developmental delayed autistic child. I often wonder if I am alone in these feelings.

  57. My son will be 2 in December. He was born 2 months premature because I’m extremely short and he was 19” long and ran out of room. When I went into labor they discovered he had a brain issue, but didn’t go into it much further until he was born and had a full scan MRI. He was diagnosed with Agenesis of the Corpus Callossum, Aqueduct Stenosis, Hydrocephalus, and an Adenoid Cyst.

    At 3 months old he couldn’t hold his head up because the pressure in his brain got too much and was holding him down, he had no perifferal vision and stopped smiling, cooing and doing things that he used to. He was regressing, extremely fast. After his surgery to puncture the cyst he started to come back to me, my happy, smiling, talkative little boy. So far he hasn’t had a need to get a stent or a shunt, but if things don’t open up soon, he will.

    He is not talking, except cooing and saying about 7 words. He doesn’t walk and because he was premature, he still has low muscle tone in his legs. He hasn’t been diagnosed with it at this time, but he is at a 50% chance of developing autism. He is in several different therapies, which at this moment don’t feel like they’re working. He hits himself and others out of frustration, he’s super, super attached to me and can’t leave my side without having a major melt down, in public at home it’s easier.

    What no one told me, was that it would feel so normal in our own world at home, but would feel like guilt and blame around other people.

    No one told me I would feel like I was seeking attention or sympathy, even though I wasn’t, when I gave them an insight into our problems.

    No one told me that I would feel the most pressure from my spouse to feel like I have it all together all the time.

    No one told me that I would feel super helpless at times and would blame myself for how my child turned out, even though I couldn’t have prevented it.

    No one told me that I would feel so overwhelmed, in a good way, when my child would learn something new and be able to keep it for more than a month.

    I know it’s not much, but he’s my all, my everything.

  58. no one told me that my son will spit ,scratch , and throw stuff at me because he cannot speak.No one told me that at age four (almost 5) he will still choke on a cookie and other solid foods and I would have to feed him and get judged by others while doing it. No one told me that keeping my career and attending all dr. Appointments, paperwork and my sanity is aging me 6x faster. One last thing (for this post anyway) , I wasn’t told everyone around judge my parenting (as if the reason for his delay is caused by me helping him)

    1. I’m so sorry that you are going through that! I hope that you have found some equally supportive people who will encourage you through the rough spots!

  59. No one told me, though I suspected, that when he aged out of pediatric therapy and later out of school, it would feel like being thrown under the bus.
    Nor did they tell me his temper tantrums would be worse as an adult than as a young child.
    Nor did they tell me how to reduce his frustration in communication caused by being unable to talk or master sign language or augmentative communicative devise.
    Nor did they tell me how much I’d love my son.

    1. I’m so sorry that you have had to deal with those things. I know your love for him covers it all, but it can still be so tough. Praying for you!

  60. I don’t think I have ever left comment at a blog before, though I read a lot of them, especially pertaining to kids education & family. This post touched my heart & I just had to thank you for it- it Blessed me. We aren’t newly diagnosed- my 11 year old was diagnosed adhd at 2 & then autistic at age 5. We spent years in early therapy, constantly at this Dr. & that. Looking back, it was all so devastating & numbing. Very hard on the whole family of Mom, Dad (and stepdad to the 2 older boys) and 4 other, wonderful kids that sacrificed for many of the reasons mentioned, lack of time/time spent having to deal & cope with brother’s issues, energy, lack of money- we almost went broke between Drs., therapies & medications. But, also looking back, I see a very close family that has endured more than many and we are stronger, have more faith, more love & more compassion than we could have EVER dreamed. It DOES get better. There will always be those things that we must deal with that our children’s peers’ parents wont have to- but I am so happy to say that after finding a really wonderful homeopathic Dr. who took the time to check his blood & food intolerances & allergies- he is entirely gluten & dairy-free, he is no longer on any medications, many of the earlier symptoms subsided, and he is learning at homeschool on par with his peers. Oh Yes, we still have special things we deal with and always will, but his progress and the hope that gives us that will continue are worth all we have been through to get here. No one ever told me most of the things I have learned so beautifully from him. Truly, he has taught me what is Important because the situation required so much of us, and we did not know how to deal with it all… I had to rely on the Lord. That made such a lasting impact on our entire family. I related to so much of what you talked about. And the readers of your blog, too- Parents of special needs kids are special, too! And the truth is, God chose You because He knew you could handle it! That’s pretty Awesome.

  61. I have read a lot of blog posts like this since my son was diagnosed with ASD, but this one made me want to reach through the computer and hug you. So many things on your list hit home, like how the baby stage goes on forever in a child with delays. I’ve thought about that so much…and you said it perfectly. I especially appreciate your sharing how you feel when you are around others who don’t understand and who are in a hurry to explain everything away. As a parent, I desperately want to feel a connection with other parents, but I am learning the limits of their understanding and sympathy. If I could add one thing to the list it would be that I didn’t expect to develop a deep compassion for parents who are struggling. After feeling so alone those first few years, I vowed to be the person I wish I could have met. I’ll never let another young mother feel alone when her child won’t sleep, or won’t relax in her arms, or refuses to be comforted or isn’t developing on schedule. I’ll never compete with her and show her how well I can care for her baby, just because it makes me feel good. I’ll never assume she’s struggling because she’s just not good at parenting yet. I’ll never again — ever — assume that the child who is screaming and writhing in public is just spoiled. That kind of compassion shined through in your article and it’s so appreciated. Your children are so lucky to have a kind, insightful and generous mother like you.

  62. No one told me people who loved my son would just deny there was a problem “he just needs more exercise”, “more vegetables will make a massive difference”. I know it comes from a place of love and they wish what they were saying was true but I cry when they think the reason my son can’t walk unaided is because I plonk him in front of the TV. He’s at school now and having a whale of time. No one told me he would be happy without me by his side. What a wonderful surprise. Thank you for speaking so bravely. Depths of strengths that we never reach the bottom of. Love to all

  63. no one told me how hard it would be to find activities that a typical developing 9 year old boy likes to do with a 6 year old dev. Delayed sister. Picture bowling with brother embarrassed as mom chases sister down the lane or her screaming as I won’t let her go hug everyone that’s trying to bowl. Just once I want to do a family activity that doesn’t feel divided.

    1. I’m so sorry that you are experiencing that. Perhaps big brother needs to talk to someone about why having a special sister is not a means for embarrassment, but an opportunity to learn to love more people.

  64. no one told me that I would be out of bed before my husband every morning. No one told me that I’d exchange an alarm clock for an alarm on a feeding pump. No one told me that at the night by the time I reset the pump, wash and rinse the extensions, mix a new bottle and get a new bag primed and easy run, my husband would be fast asleep curled up in a blanket that he doesn’t share with me. No one told me how many times a day is have to tell my other 3 children “I’m sorry I can’t I have to … for the baby”. No one told me that on the rare occasion my husband can stay awake long enough to hold me at night that it would be the best feeling ever. No one told me that picking my children up at school and having all their classmates already know their brother before ever seeing him because his older sister talk about him somkichband love him so much, would remind me everyday how special the bond of family is.

      1. I have three children with developmental delays and some day are just plan hard, most people just don’t understand the struggle, I feel alone at times. My fourth child is developing at a regular pace but the love I get from all my kids makes the challenges worth it.

  65. As the mother of a 14-year-old son with Down syndrome, I can identify with your list of “things no one told you…”! My favorite is the last item on your list. Our son brings such immense joy, happiness, and laughter into our lives…and I love him more than I could ever express!

    Thanks for sharing. 🙂

  66. No one told us that we would cry over the small things. My son has CP and yesterday he pulled up to his feet for the first time at 16 months. His father and I cried so hard our eyes were swollen this morning. It’s the things that most parents don’t think about as being huge events that lead the parent’s with special children to thank God for every moment.

  67. No one told me when I adopted my seemingly neuro-typical son at age two, that he would never catch up on what he missed the first two years of his life.
    No one told me how hard it would be to get help for a child who looks “normal.”
    No one told me how resentful I would be when people tell me I’m a great mom and many days I feel like a failure because I don’t know how to help my own child.

    1. That last one is so very true! Every time someone gives me a compliment on my kids, I’m always thinking “if only you knew…”

    2. I understand you completely! My step daughter is 4 1/2 and my step son is 6. Both with delays but more my step daughter. We have full custody but I️ came into her life at 1 1/2. No one told me how exhausting it would be. No one told me how she would resent me and ruin all my things because she can’t express herself. No one told me how much attention she would need and how it would affect my own daughter. No one told me that once you think your finally getting closer to being “normal” she starts regressing. I’m exhausted and at a complete loss ?

      1. She might not be destroying you things out of resentment. Although I know it is very frustrating! My daughter is 18 and still were the bed almost every night unless she sleeps with us. I have no idea what the difference is but sometimes I encourage her to sleep with us because of washing all the layers of sheets, potty pads, blankets. We spend so much money on laundry detergent and stuff to get out the smell! When my oldest kids still lived at home my husband and I would take turns having date night with one child at a time. We would do fun stuff we couldn’t do otherwise. To be honest I really looked forward to these dates myself. It’s hard when you realize they are getting harder but only because they are getting bigger. I have had two shoulder surgeries on my left arm and need it redone and need my right one done. So if yours are still small try to save your body a little if you can. It’s hard. I hurt in so many places from trying to control her during meltdowns.
        But the love they give you is like no other. It is a hard road. Especially if you haven’t gotten use to it as they grow. But down the road, where I am now, they will become your best friend. Even though at times they hurt you. They don’t mean to, it’s just they have so much input, to much. Sensory is so much bigger then I ever imagined. But you can do it! The best reward is their love

    3. No one told me that I’d still be sleeping on my 11 year old sons bedroom floor every night instead of in my own bed because he still wakes 4 / 5 times a night and knows when I’m not there. No one told me I’d be changing nappies for 11 years with no end in sight as yet . No one told me I’d replace 19929372717 million tvs and tablets ..pairs of curtains light fittings radiators u name it . No one told me I’d have to convert my garage in to a play room just for him ( my livingroom is beautiful now I have curtains 🙂 no one told me how lonely it is here on your own after u give up trying for that normal life after u lose yourself to auto pilot and u dont try to go to that day out or to the family do because it’s not worth the stress and melt downs and it’s easier to stay at home . No one told me it was possible to have cried un countable times b4 8am because sleep deprivation and stubbornness . No one told me about the shituations !! . No one told me he would capture the heart of most people that meet him no one told me I couldnt live without him ❤

  68. Hang in there, mama!
    I identify with this so much – my nearly 8yo son with speech and developmental delays has opened our eyes in so many ways to things we took for granted with our neuro-typical 12yo daughter. Tears of frustration over simple things eventually give way to tears of joy when those things are mastered. And yes, sometimes they regress (SO identify with that!), but keep on!
    He may not learn and grow and progress at the rate of others his age, which can be saddening, embarrassing, and yes, sometimes angering… but he is learning… he is progressing… and hope is a wonderful thing. Never lose it!
    Thank you for writing this – it just helps to know there are others out there who struggle, but who hang in there and who love their kids with absolute certainty. My son feels that and I know your daughter does, too – and that’s the greatest thing we can give them!

    1. Absolutely! I think there needs to be opportunities for us not only to celebrate the good things, but to acknowledge the very difficult things.

      1. Thank you for writing this blog. My daughter is 8years old and was diagnosed with developmental today. Every day is a challenge with her. She is a very loving child but struggles at every day life. People do not understand what we go through with a child with special needs. You are doing a great job.

  69. My son who is 31 was diagnosed with developmental delay and I can truly identify with your post. Ty’s younger years were some of the most difficult times in our life. One of the hardest things for me was hearing “Someday, when Ty grows up and marries…..” or “Someday, when Ty goes to college….” or “Someday, when Ty is living on his own…..” These things all came from family and friends and were meant to give me hope and ease my pain. I did understand why they said it, but also wanted scream in frustration that he would never do these things and that there wasn’t some magic pill out there that would suddenly make it all better. No one every told me how much your heart could ache because of well intentioned words.

    What I can tell you is that we are blessed beyond measure for all the love Ty has given us over the years and we truly know that our lives, and the lives of all those he has touched, are so much richer and fuller because of him.

  70. I’m sure this wasn’t an easy post to write, but it is just what other parents in similar situations need to read! I’ve never really thought about it, but as a special ed teacher I often hear similar things from students’ parents. My team and I often find ourselves telling them that it is common for _____ to happen. Parents are often relieved to hear that this happens with other families. This post will help many!! I can also tell you as aom of a child with delays and a sped teacher….it gets easier and the phases do end!! I look at my son who is now 14, & realize I should have focused less on what he wasn’t doing and just enjoyed more. They also don’t tell you how stressed and tense you can become. When my son was young be wouldn’t eat- barely anything. I hemmed and hawed and stressed over it all the time. Now at 14 he towers over me, is a healthy weight and eats a TON! Just remember, it gets easier!

  71. Wow, I just found your blog after seeing your potty training post on pinterest. I was reading and and thinking, “yeah, but this wouldn’t work for my child”. Until you mentioned your daughter with delays. My daughter is 4 and had down syndrome. I’m so glad I searched for your blog and found this post. I needed it today! Thank you for sharing. You’ve got a new fan!

    1. I’m so glad that you stopped by! I too get so frustrated with all the “advice” on the internet when I know that it wouldn’t work or doesn’t apply to us. I’m glad that I could be an encouragement to you today!

  72. I bet no-one told you how special you are too:)
    It is a hard journey (that is never ending I’m afraid) but the hugs, snuggles and their unconditional love for you makes it special.
    Best wishes to you and your family

  73. No one told me how much I would hate to leave the house because it usually means we’re going to another doctor or another therapy appointment and even when it doesn’t I’m too tired to want to do anything.
    No one told me that I would come to hate developmental charts with a passion especially when the bouncy fresh out of collage perfect hair and makeup (while I look like I dragged myself out of bed and though a food fight to get there) therapist pointed out all the things my child should be doing and isn’t.
    No one told me how everything would be worth it when he snuggled up next to me and kissed my hand just because he was happy 🙂

  74. Hi,

    My 8 yr old son has Down syndrome. He is not potty trained so we use Goodnites pull ups all the time. They keep him dry through the night most of the time. Unfortunately, they are not cheap but they fit him better than adult diapers.

    1. We’ve looked at those. Perhaps it was the selection in the stores we were at, but they didn’t have anything for her size. I’m keeping them in mind though.

      1. My son is 45lbs, 41/2 yo, has LLD and still needs diapers. I found pampers size 7 on Amazon they fit him (just). They do a much better job than the pull-ups and they are a good price on amazon.

      2. My 5 year old Just turned 5 this past Christmas ..is nowhere to be potty trained. She stands over 4 feet tall and 84 lbs. We order online with walmart Pampers Under Jams. S/M 38lbs – 65lbs, L/XL 58lbs-85lbs

    2. underjams work well (by pampers). i have a non-verbal (autistic) 6 year old that is still in diapers and i have found that these work well. the huggies version is called overnites and they also work well. my son has leaky gut syndrome, so we deal with a lot of poo’d diapers continually while we are working on healing his gut. some of his supplements actually cause more of those issues (like vitamin c crystals, looking into buffered now supposedly absorbs a bit better for kids that get the runs from the regular salts).

      i feel your pain mama. your thoughts, feelings, frustrations etc echo my own. i have five kids and my 6 year old was the fourth in line, number 5 came as a total surprise. he’s 18 months old. the rest of my kids are “normal”. it’s been hard watching my 18 month old surpass my 6 year old in expressive and even receptive in some cases. tho, my 6 year old is very, very bright. just silently.

      nobody told me….

      that i would have to “sleep” in some crazy alert mode while trying to rest at the same time, to make sure that my child did not escape from his bed in the middle of the night and figure out how to get out of our home.

      that i would ever know or understand what the word “stimming or vocal stimming” meant.

      that i would have to have a conversation with my children to tell them that someday when they are all grown up, i might need them to open their homes to their brother and take care of him when his dad and i are gone.

      that i would have to lock my house down like a fortress.

      that i would have a six year old in diapers and no real end in sight yet (it is a slow slow slow training process and any mistakes will put as back at square one).

      that my son’s issues affected my other children so deeply.

      that the patience and time required of me would me immeasurable.

      that i would have to consider every situation carefully before trying to go anywhere out of his “norm”. which usually means no visiting family, no vacations.

      that the one vacation i was able to take would be a week and drive from hell but found out that the ocean made him the calmest i have ever seen him and i would be able to just breathe for a bit.

      that i would flip flop between hope and hopeless seemingly every couple weeks (or less sometimes).

      that i would spend a fortune on EXPENSIVE groceries, and drive myself bonkers reading and interpreting labels for everything under the sun.

      that i would find my strength in all my weakness…

      hang in there…i think that’s all we can really do.

      1. Wow yes to SO many of these! I’ve had to minimize and / or eliminate vacations and family visits to maintain a norm/safe environment at home… I never fully sleep at night, waking at a rustle in my son’s room to prevent a wide awake child at 3am, I spend an absolute fortune on food just for him, I spend another small fortune on diapers with no end in sight either… whew. Thank you for sharing!

      2. Kristyn, I totally understand trying to keep them asleep at night. Even when they do actually make it through the night (only been a couple times for us) we wake up because our minds have built the habit. Big hugs to you!

    3. My son is 9, and is almost potty trained. He still needs diapers at night. He is a big boy, so store diapers are not an option any more. I have to say, if you look up different websites for diapers for special needs children, they have some good options. The site that I use even sent me samples so that I can figure out the ones that work the best. I also think that for the price, they were about the same as the store ones, and were much more absorbent! The potty training thing is a hard and long process! Best wishes to all of you on that one!
      I think that the one thing that no one tells you is how lonely you feel. I have friends, and family that are there for me, but no one really knows how I feel or what I am going through. Sometimes it is easier to stay home than go out and face everything out there.

      1. Sometimes Medical daycares for children have diapers donated which they don’t need. Might want to look into this. I care for a special needs 9yr old in diapers. Often there are packets of diapers not used because she has moved on to next size. Mary

    4. We actually had great luck switching to cloth when my middle child was 7 years old. She trained within a month. Worth every penny. And she couldn’t shred them. Alva diapers from China are cheap and they have made “big kid” diapers that actually go up to about 100 pounds for special needs kids. They don’t have them in stock all the time but they can be co-oped through one of the national groups.

    5. I honestly bursted into tears reading this. My daughter is five years old, and for five years I’ve felt so alone with her delays. It’s just feels so hopeless sometimes. I’ve never been able to relate to any parent, like I did with the person who wrote this article. I can’t put into words how good it feels to know I’m not alone, and that there are other kids just like my little girl. Thank you for sharing, because I’ve never been able to put what I go through on a daily basis into words. It’s like you just turn into this robot, and you just do for your child. You almost feel guilty for even being honest with yourself, on how hard it really is. I always try to tell myself there are others who have it worse so I blessed. But I got to tell you it doesn’t make it any easier. As a parent it’s hard because you go through everything you could have done differently. Maybe if I did this or that…Maybe she would be normal. I sometimes catch myself comparing her to kids who aren’t delayed, and it kills me. I feel awful that I do, but it just happens. But I love that little girl, and I wouldn’t trade her for the world. Thank you for sharing this I really feel like I needed to hear this.