New here-intro and looking for ideas

[gg142]

Hello,

 

I am new to this forum, I found it through another online support group and I must say it is really amazing.

I have 2 children age 5 and 1/2 and almost 4. My youngest girl has displayed mild global delays all her life. we know she has low muscle tone and hypermobility, she also has a severe speech delay that is now being tentatively diagnosed as "language processing disorder" or specific language impairment (SLI).

We are living in the UK at the moment and the lack of diagnostic services as well as therapies has been appaling, we are trying to move back to the US as soon as possible to find a good school for her and her sister (who is typical but also not challenged at all in the school she is attending over here).

 

We should be moving, if all goes well with my husband's jobs, in the NW Philly area and I would love to connect with anyone from there, more specifically Chester County.

 

Additionally I am looking for more therapies ideas I can implement with her while still in the UK.

 

She is almost 48 months, her speech is at the 30 months level, mostly the issue is lack of sentence forming abilities.

She learns mostly visually and tactile, she does not learn very easily as a typical child just being exposed to the enviroment.

 

Speech therapy here has been a failure, the improvements, while there, are very slow, and they failed to identify a receptive speech delay until I pointed it out and asked for more formal evaluations. I saw the program called TALKIES from Lindamood-bell and would love feedback.

 

I just recently started looking into the integrative listening system, more OT, and also the ABA technique of verbal behavior. We don't have a lot of funds to pay for all these private therapies and the early intervention here is only speech therapy every other week or less with periodical breaks.

The ABA/VB is for now only implemented for 4 hr a week with a young tutor under my direction (I am a clinician and I have started studying more and more of this trying to figure out what si wrong with our child).

 

I would love to connect with parents that have children with processing disorders and find out about approaches and ideas.

We are positive we are not in the autistic spectrum, she is very social and play/social skills are age appropriate.

She is now showing some mild cognitive delays as well, which would be expected I think if you have very immature speech and processing issues. I want to make sure we offer the right support now rather than wait for the school system to point out faliures that I am sure will happen with the current status.

 

I will write more another time, if you made it this far...thank you for reading!!

GG

[AliR]

At age 4, DD was presenting much the same, although her language scores were even lower (I think at 4yrs 5 mths her language was around 18 mths-2yrs). She was assumed to be ASD, but it has become obvious that she misses out on some of the key factors for this just like your daughter. I would agree that the UK can be very poor at providing any services, and you will usually find they are keen to diagnose but not so keen to provide remedial services after diagnosis.

 

The biggest thing we have found to help was learning to read. I suppose it makes sense that if you can 'see' good language as a model, then this can carry over into life. She was reading basic material just before her 5th birthday, and starting to read little books by her 6th birthday by which time we had ditched the school system altogether.

 

The other things that helped were the 'More Than Words' and 'Talkability' books from the Hanen organisation. If you can find a Hanen course for parents - often run in the UK - that would be useful for you. Videos with modelling simple language were also good. We used Maisie Mouse a lot, and UK tv programmes with the presenter Justin (sorry can't remember his surname, but the programmes are often targeted at a special needs audience).

 

Just to give you an idea of where we are on our journey, DD is now just 11. She has just finished 5th grade successfully, is half way through 6th grade math, but oral and written language are still troublesome but functional. The language issues meant that she presented as having cognitive issues, but none have been found.There is no school setting that would work for her at the moment, as her learning relies on a lot of work one-to-one and using multisensory techniques which are unlikely to be found in a school setting.

 

Hope this helps.

[geodob]

Something that can be helpful for 4 year olds with severe speech delay, is learning Sign Language as an interim measure?

This provides an alternative way for them to practice sentence formation and expression.

Where a crucial issue that often occurs around 4 years of age, is that children becoming increasingly frustrated with difficulty with expressing themselves.

So that sign language provides a way to avoid this frustration, to some degree.

Typically children have to teach other children and their teachers some basic sign language, as most don't know it?

Where this turns the situation around, as it is the other people that have the difficulty.

Though it just provides an alternative method of communication, while she develops her speech abilities.

 

It is also something that she could return to in later years of schooling, where she will probably be required to do a second language?

Where sign language can often be used as an alternative.

[gg142]

thank you! Actually we are bi-lingual. She can understand Italian as well as English, her difficulties with longer commands are the same in both languages, her spoken Italian is very little, but mostly because we are trying to only use English for her and all her therapy is in English.

 

Justin or Mr Tumble is a loved show, we watch it a lot. I am glad to hear that my findings (diagnostic is somewhat happening, therapy is non-existant) are realistic.

 

I also ahve More than Words! yes I have implemented stuff from the book

 

and the idea about learning to read I can try, she is recognizing several letters at the moment.

 

How did you go about school? I am not happy they want me to put her in reception in Sept (she will be 4 and 1 month!) and I am considering to send her to her old preschool for social interactions, do home education and lots of therapy.

 

I am also looking into more sensory itnegration and auditory processing remediation.

I am trying out 4 h a week an ABA tutor specialized in verbal behavior and so far it actually seems to help more than speech therapy...

 

THANK YOU for your replies

[AliR]

DD was happy at pre-school (in the UK system). Reception at 4 yrs 3 mths was simply awful. The class size was bigger at just under 30 children, and there were 4 adults in the room as well. The school was committed to full integration of special needs children.

 

Reception usually involves some sort of structured learning in the morning. DD was capable of this, but being labelled special needs meant that the expectations of the teacher were very low. If you are struggling to understand the teaching due to a language disorder, then the class had moved on before you have absorbed the material. The sheer chaos of a 'child-centred learning' classroom is very difficult if you don't understand what is going on.

 

Surprisingly, the worst part of reception was the unstructured activities such as playtime, art and music which are supposed to be fun.

 

We went on to part time reception, part time homeschool in the second term (she was not yet 5 so not of compulsory school age). She came out totally during year 1, when it was obvious the amount of strain the whole family was under. I got so frustrated dealing with the system.

 

If I could change anything, it would be to have ditched the school system after preschool and not listened to all the education experts who know best. I think your idea of preschool plus homeschool and therapy sounds just wonderful.

[Lecka]

Skipping to the bottom: my younger son is doing VB/ABA also. He gets about 4-6 hours/week now.

 

I do a lot in the day with him, I don't do ITT (at present).

 

Have you been able to evaluate with ABLLS or VB-MAPP? That is the thing here.

 

Two books I really like are The Verbal Behavioral Approach by Mary Lynch Barbera, and a book about doing the Early Start Denver method. They are both great.

 

My older son has auditory processing issues (mostly remediated or grown out of) and has visual processing issues. He also has suspected slow processing. He also has delays in motor coordination.

 

We are fairly new to VB but Iove the emphasis on Manding. My son is at a high level 2/low level 3 level right now (like a 2- or 3-year-old level -- level 3 is 30-48 months). He is 4 and making steady progress.

 

 

 

[gg142]

AliR I have pretty much decided to ditch school thank you for supporting my thinking as everyone else is against it. Actually not true, the old preschool has been wornderful and offering to look into free funded hrs so I can spend more money on PM therapists (this is the people I like! they care about the child not the rules!)

 

Lecka wow it is great to find others that have non autistic children doing VB, I am totally new to this, I read The Verbal Behavioral Approach by Mary Lynch Barbera only and just hired a young tutor last week (4 hr a week), my plan being to find a consultant and other tutors both in the UK and hopefully as soon as we move to the US.

 

what is this below? no we did not do any evaluation, this only started because I finally got fed up with fruitless speech therapy and started approaching the problem on my own!

Have you been able to evaluate with ABLLS or VB-MAPP? That is the thing here.

 

thanks for the help and this is validating I am going in the right direction.

We are seeing a sensory integration OT tomorrow and learning about the listening system as well...

We are going all out as before she has struggled far too much due to the crappy diagnosis (or lack of)...I did not realize she has processing issues as the sensory ones are fairly mild and mostly are under-responding so more difficult to detect in a non very verbal child

[Lecka]

On, he does have autism.

 

His biggest problem is just not having a natural grasp of language, though. He has good imitation skills, play skills are coming along, matching is coming along, etc.

 

ABLLS and VB-MAPP are written by the same person. VB-MAPP is more in developmental order, but ABLLS has more tasks (or something).

 

It is a list of developmental goals, either way.

 

Most is language.

 

Language is broken down into functions of language: mands are asking for things, tacts are labelling, intraverbals are back-and-forth, echoics is articulation... They just have these names for these categories.

 

So for a child to "know" a word, they can use it in each of those ways. What we have had with my son -- he can know a word to label something but not to ask for it. Bc his Manding was lower than tacting. But when you know he knows a word, it seems like -- he knows that word, why won't he use it?

 

Here the things the therapist works on are partly determined by obviously needed things for daily life, and then by looking at the VB-MAPP and seeing what comes next.

 

Edit: I have my son's copy of VB-MAPP and it is basically just a list of goals, and as they are mastered, he goes to the next skill.

 

He has some gaps that we go back to, even though he has many skills higher, but those are some things where he is impacted by autism. The main one is responding to his name. In that category he has many "higher" skills but we keep going with responding to his name also.

[Lecka]

Oh, I see why I am not clear. I have an older son who is 8, he has suspected processing issues, has been in speech therapy with poor auditory discrimination (so different sounds same like the same sound, and some words will sound alike), maybe some sensory issues. Slow processing has been mentioned, he can't think of things sometimes if you ask him point blank.

 

I have not had him fully evaluated. He has a speech/language battery when he started private speech. He has had some OT evaluations. I did major dyslexia-style reading intervention with him all through 1st grade and the summers on either side.

 

My younger son is 4 and has autism.

 

Maybe you can find out a little about vision processing from OT. That is where I have gotten info with my older son (though there are more options, just since you have it scheduled).

 

My younger son -- it is just early to get into with him. I am happy with his therapy -- and to some extent I think since he is doing well with VB-MAPP, that is where time and energy is best spent for him right now.

 

For him, he has minor sensory issues, but they are not causing problems, so I don't worry about them (besides the little accomodations I make).

[gg142]

thank you, we have met with the OT, my child is definitely not autistic, by now everyone has said that, but this OT (who is American trained and REALLY good) found her sensory integration is very poor. She is convinced this is the problem for the speech, we are at risk of learning disabilities big time!

 

I have started my own personal therapy experiment, at least for the time we are in the UK where it is almost impossible to find a program in preschool for children like her. I am hiring a VB tutor and a supervisor and will use my OT and SLT as our "consultants". Amazingly all this people loved the idea and are up for the challenge, we will also collect data so that we know best what and how it is working.

 

We started also 30 min of iLS, she barely tolerates it, and several other sensory programs. We are doing time on a pony once a week.

 

I know it seems a lot, but, she is tolerating it and this past 2 weeks have been amazing! she went from only set phrases (what's that? where is that gone?) to say "my socks are wet", "my horse called taffy, my horse is brown" and she has been singing non stop songs that I did not even knew she remembered!

I am trying to stay realistic and trying to think it might plateau quickly...but I am writing this pretty much in tears of joy.

 

Any suggestion any of you might have I will take it seriously. I am a scientist, I have been study neurobiology of child development for a while now and I am trying to select only those techniques that seem promising and implement them with the help of expert therapist to overcome the sensory overload and then the speech.

 

Wish me luck

love to everyone (especially the LO's)

GG

[Lecka]

If she is making progress I don't think you need to worry too too much about plateau. It sounds like she is responding to what she is doing.

 

When you look at her data you will be able to see.

 

My son has not had a plateau yet but he has had slower progress. So far there has always been an area where he is ready to move forward, though.

[gg142]

thank you, as you well know this is a roughly rough road to be on