I have a child with motor dyspraxia

amother

Peach

Sun, May 27 2018, 6:12 am

Has significant language delay about a year behind. Social difficulties, being bullied. Dd is 4. Just had her birthday.

I did an general evaluation. By a bcba.

I did not speak to her about details yet, though she gave me some info on the phone.

I'm scared and nervous, though she is super bright in other areas I'm really scared.

I will repeat her nursery because for all intents and purposes she's a 3 year old. Even though she's tall and be a little advanced her speech is not up to par at all.

Can anyone tell me if they had a child like this and have you seen succes with ot, put and speech? She is currently getting ot, and speech and I still see her struggling mightily socially and speech wise.

I definitely have to wait and see what the evaluation will give . She can definitely be in a regular school program. Only thing is that this is so new to me. I wanto to help her I feel so out of control and want to grieve now that my child is going to struggle for so long. That this doesn't just go away.

I know this is minimal compared to the other stuff out there. I have a child with severe ADHD and another one with issues I would rather not even go into. I need chizuk, I know Hashem gave me all these challenges for a good reason. But I'm sad and it's hard to accept.

I do know that the evaluator told me according to what I described she thought she was seeing a very disabled child and she was so surprised that it wasn't nearly as bad.

That she can attend a regular school and that her issues are mild. Even so I don't really know yet how this will affect her. I do know she might have learning difficulties I don't know yet about.

Sorry for rambling.

She's a Yiddish speaking child and in my area I don't know all the Yiddish speaking therapists as I recently moved.

It's through word of mouth. And that is quite difficult. I know there are but I don't know who they are.

amother

Denim

Sun, May 27 2018, 7:00 am

Hugs. I don't know a thing. I can share my sad story that has nothing to do but I want to stress out to you what I was told when my "child" 21+ years snapped: always get 2nd opinion and after a while restart evaluation. Again and again. Repeat. My child started speaking late had bathroom issues years. Was socially a bit off all years and more years basically a whole child and teenage and begining of adult life. Started reading very late. Stuborn. Liked and likes to try things. Ended up learning late to read and was smarter than the whole class. Still socially a disaster. Went a lot to play therapy. I did something very wrong for sure since he/she snapped at age 21+ . Go for 2nd and third opinion when chosing school. Keep on reevaluating lets say yearly with highly recomended people even if you lose your head asking close friends for maaser like me. (But im doing this too late) Sometimes I wonder if a non regular school would have prevented this. I did take him/her to a psychiatrist who we thought was top at age 14-15. And he said no need for meds. I think he misdiagnosed. My new psychiatrist now thinks he was bipolarish even as a child although I think they don't name it bipollar as a child. Maybe didn't need then. His/her play therapists did not send to a psichiarrist. So get 2nd and third opinions even if they cost you a mint. ( now I have a chesed campain on the web) Sorry really sorry to scare you. I think im more venting than advising. So a good psychiatrist would have said at age 14 that child needs follow up in a year or so. Or I should have asked when should we reevaluate.....? Then went for support to a coach who didn't say needs meds. Then after 21 refused to see coaches or psychologists. Then "child" wanted some very expensive treat so I said only if you go for therapy.so therapy started but I chose a non licensed person who did not sense the need for meds and this was a very short time before snapping on the street. Many symptoms were there already and this not licensed therapist did not know the basics that these are symptoms of snapping. So 2nd opinion and third and redo every year

amother

Scarlet

Sun, May 27 2018, 7:11 am

If you live near Brooklyn area, you should consider sending to strivright. They specialize in speech and language delays and have classrooms set up to be language rich environments. They get booked fast though and probably have nothing available unless you really push. I've seen many strivright kids go on to mainstream schools after the preschool (they are only preschool).

amother

Mustard

Sun, May 27 2018, 7:42 am

I have had a child with some issues. I don't know if it was motor dyspraxia specifically, but I can say that early intervention is HUGE! There has been tons of research done on all kinds of delays, and they have found that the right intervention can really make a huge difference. It's important to get the best therapists you can, a good therapist can really make a difference!

amother

Denim

Sun, May 27 2018, 8:04 am

I read about grieving. Its important. About saying good bye to our first child and welcome our new child. That helped me a lot. Im not complacent. Im killing myself and even my teenager complains that everything is around xyz's needs but I think grieving was healthy for me.

amother

Blue

Sun, May 27 2018, 8:12 am

Just posting to give you some chizzuk-my child is hearing impaired and when he was a baby he was diagnosed with an additional diagnosis that was devastating, he was behind in so many areas - bathroom, speech, socially... I devoted my life to him, running to the best therapists, sitting for hours working with him, everything I could. Today he is in a regular school, doing beautifully, he is literally a different person. He is still hearing impaired but Bh excels in school and in life. You can only do your best and daven, there is so much these kids can do, given the chance at success!

cuties' mom

Sun, May 27 2018, 8:16 am

I have a child with global apraxia. He started getting therapy at 15 months since he still wasn't crawling, bearing weight on feet, lifting up his head when lying on his stomach, tolerating solid food, or babbling. He started eating at 19 months, crawling at 22 months, walking at 24 months, and talking at 33 months. I sent him to a special preschool for 2 years where he received speech, OT, PT, and counseling. After that, he went to regular ed pre-1A with the same related services, despite being the youngest in the class. (His birthday is the end of November.) He is now in 6th grade. All his teachers love him. He is considered a serious learner, enjoys reading, is very good at math, has friends, loves sports, and in general is your typical 6th grader. He does still get therapy since he only eats soft foods, messes up words that have two consonant clusters, has poor fine motor skills, and isn't very coordinated, but if you look at him or talk to him, you would never guess how he used to be.

amother

Orchid

Sun, May 27 2018, 8:45 am

It not something to be scared about. Usually you need an OT involved. The child will be ok. You can send the child to a school that is for regular children with therapy like Yeled vyalda or Bais Simcha for a year or two and then the child will Iyh mainstream. I have had students like that and they were ok after a year or two. Baruch Hashem we have frum schools that deal with children that need a bit of help. You're a good mother and you appear to be on top of it.
Good luck

tweety1

Sun, May 27 2018, 8:52 am

I was in the same boat as you. Bh past tense. You can pm with any questions you have. I prefer to speak in private.

amother

Peach

Sun, May 27 2018, 10:53 am

thank you to all the good, ugly and the positive. the positive definitely made me feel so much better. I live in lakewood so for the yiddish speaking community its quite hard if you dont know too much. baruhc hashem I found a yiddish speaking evaluator.

I would love for the lakewood chasidish yiddish evaluators and therapists to advertise or at least reach out to the yiddish speaking schools. the principles are really looking out for you. as far thhe parents they are hoping that the principles and teachers have some infoormation so they can turn to the professionals and get help for their kids. I know there are yiddish speaking therapists out there. please make yourself be heard. we need you desperately.

so now that this is off my chest. I can relax a bit. just kidding. its hard to type so much.

amother

Peach

Sun, May 27 2018, 11:15 am

tweety1 wrote:

I was in the same boat as you. Bh past tense. You can pm with any questions you have. I prefer to speak in private.

I set up an email in case you have any info you want to share or I can ask you anything. its luvmydyspraxicchild@gmail.com

thank you to anyone with your replies. its so much to not feel alone. and to be able to communicate is really special. thank you!

amother

Peach

Sun, May 27 2018, 11:21 am

amother wrote:

I dont live there. I know of the schools your are talking about. I live in lakwood and the oppportunities like that is not existent here. because dd is yiddish speaking. if she was a english speaking child/family it would be a totally different story.

so back to reality there is nothing like this here. I cant do what I cant, right? I have to do the best I can. so in the meantime I will wait and hear what the evaluator has to say. she definitely did say that dd is not the weakest on the diagnosis and she does have some delays.

its pretty sad that, if she would have gotten help earlier she would do better now. I do think shes still young and will be ok.

amother

Peach

Sun, May 27 2018, 11:25 am

the thing that scares me is the fact that she struggles socially and she doesnt learn things quick. so I do see she will have difficulty in learning. I also struggled as a kid. but back then noone got evaluated. and my parents did the best they could. I failed high school throughout. but I do see that if dd gets help she will do better.

I also hope dh will see and understand it. right now both him and I are angry at the teachers she had this year, they were not really helpfull at all. one of them was a totally absent type and the other was too loud and not at all what my dd would have to benefit. she got lost in a class of 25 children.

amother

Mistyrose

Sun, May 27 2018, 1:14 pm

I have dyspraxia, and I have a child in the process of being evaluated.

Please feel free to ask me anything.

A few things:
- A BCBA is not usually professionally trained in these kinds of diagnoses. Please, please, please see a pediatric neurologist / developmental neurologist for an accurate evaluation. It could be accurate, but you want to make sure you are treating the right thing in order to treat it effectively. I have a child who they thought had dyspraxia (especially because of the family history), but after evaluation the neurologist said it wasn't dyspraxia and that she really has low muscle tone and hypermobile joints - although it looks very similar, treating it like dyspraxia was really the wrong approach to helping her actual issues, so if your daughter doesn't have dyspraxia, it is important to know it to optimize her treatment. Speech problems are also not the usually the main problem in dyspraxia, although they sometimes occur (if speech is the only issue, it is probably not dyspraxia), so definitely make sure you get her appropriate evaluations (including evaluations for hearing and language processing if you haven't done so)
- You should definitely do as much PT, OT, and speech for her as soon as possible, with or without a diagnosis. They help so much! All 3 should be done.
- Leaving a kid behind in school is not always the right approach, so please consult some other professionals on this to see whether it is really warranted here. Sometimes it is right, sometimes it isn't, it very much depends on the school and the child. Sometimes, moving schools (also regular education, not special ed) is needed because the school can't handle the situation well. If there is bullying going on in a nursery classroom and the staff can't even control that in a group of 3 year olds, you should seriously consider another school, whether or not you have her repeat nursery there.

The nice thing about dyspraxia is that it just keeps improving as you get older. At some point, most kids catch up enough to have an age-appropriate level of motor functioning, even if not exactly on par with their peers. Also, therapies help so much. Your child may never be a star athlete or a world-champion cross-stitcher, but can definitely become a normally functioning person.

I won't lie to yo and tell you that my physical abilities are the same as yours, they are not the same, but that doesn't mean I have to be less functional than you. I didn't learn to tie my shoes until I was 9, but it made no difference because so many kids' shoes have velcro or buckles; I learned to swim very late, but within 2 years I became the faster swimmer in my age group; I learned to ride a bike without training wheels late, but I did learn how to ride eventually, so it made no difference; writing is kind of hard and my handwriting is kind of messy, so I just type most things instead, which is what most people do anyway; I can't crochet, so I just buy my husband kippahs; zumba isn't something I can really do well and I was never very good at sports, but I do running, power walking, and martial arts for exercise. When I have to learn a new physical skill, it will take me much longer than you, but I already know that and know how to practice more to get where I need to be, and the older I got, the less of an issue this became. Sometimes I tire out more quickly, so I've learned to take more breaks, and my husband peels the vegetables when my hands are too tired, but I can do it too if I need to. I am still a little clumsy, but so be it, it also has improved a lot as I grew up. You probably know plenty of people with dyspraxia and never noticed.

The most important thing is to get therapies as soon as possible, and do as much as you can before first grade (writing is a killer for kids with dyspraxia if you don't get PT and OT in advance), though also continue after first grade. OT and PT are both needed for dyspraxia, so please make sure to get both, they are so helpful. Speech therapy too!

In terms of social skills, you may also want to explore if there are social skills groups or therapies, but I don't know what is available for that age. But improving her language skills will also help her socially.

amother

Peach

Sun, May 27 2018, 2:05 pm

mistryrose, if you do a little research as I did you would see that speech and language is a major factor in dyspraxia. not just obviiously but also. and dd has a delay. she is seeing an ot, and speech therapist. I am quite confident the evaluator knows what shes talking about. dd has the symptoms of dyspraxia. and this bcba has knowledge in many areas. so im quite confident.

amother

Mistyrose

Sun, May 27 2018, 2:42 pm

Please don't feel like I am trying to doubt the BCBA you know, I'm sure she is very experienced, and she may very well be correct. But many BCBAs, while wonderful at what they do, are not professionally trained or qualified to give a diagnosis - getting a formal diagnosis is so useful for getting the best treatment and in getting services. Our child was mislabeled with dyspraxia by one of the top PTs with decades of experience in certain kinds of evaluations and treatment, but the incorrect label set back her treatment and progress so much, and when the neurologist confirmed it wasn't dyspraxia, we were able to switch gears and treat our child better and it made such a difference in her advancing. The PT was even so excellent that we stayed with her - because she is extremely knowledgeable and a great therapist; but I wouldn't rely solely on her diagnosis because she is not professionally trained and qualified like a pediatric neurologist is.

Also, as mentioned, I know that language issues can come with dyspraxia, as a result of the motor planning needed to articulate speech, I just wanted to make sure it wasn't the only symptom, since you didn't mention any other motor difficulties/delays at all in your post, so I didn't know what else was there. It was a just-in-case scenario, as it is impossible for me to get all the info from just a post or two of yours, and I wanted to cover the relevant bases in my reply in order to give you the most info I could.

Anyway, the point of my post wasn't to make you feel like I don't believe you, just that it is always good to know what you are up against and to give you some encouragement about the outcome and which therapies are important and that they do help. Good luck.

amother

Peach

Sun, May 27 2018, 3:40 pm

I keep writing an answer to the thread and its not showing up for some reason

amother

Peach

Sun, May 27 2018, 4:15 pm

I really appreciate all your insight mistyrose. its clearly evident that your a nice person and just wants to help. I really appreciate it.

I will take your advice into account. its interesting that you mention a pediatric neurologist. when I was told dd had issues, I wasnt even told who to go to and what type of issue it is. I was really in the dark, because even if there are yiddish professionals in lakewood I dont know who they are.

its extremely frustrating to know you have a problem and dont know whom to turn to. its probably better not to know you have and have no clue where to turn to.
thank you hashem that I found someone. so this is the start. and hopefully she will catch up. I do hear improvement in speech all the time but not enough that it should be age appropriate.

tweety1

Sun, May 27 2018, 4:48 pm

Op I sent an email. My email is shprintzadevosha @gmail.com

amother

Smokey

Sun, May 27 2018, 6:51 pm

Does your dd speak any English?