Early Intervention evaluation today--speech delays

[4theluvofpenn]

Hi all,

I would like to start by saying today was an emotional day for me so I hope everyone can be sensitive to that when responding. I know that her condition is not as serious as many of your children's conditions, and I am thankful for that, but I would like to ask any support you all can offer.

I have a 13 month old who was referred to EI by her pediatrician. At today's evaluation she scored a 61 in language (77 is passing), 69 in gross motor and 70 in self care. She is not yet talking or walking. She can pull herself to stand. She used to say mama but for some reason stopped and no longer makes sounds like da, ca, ba etc. She is only grunting, growling, laughing or squealing. Also, she has metatarsus abductus and is getting reverse last shoes to correct it. Does anyone have experience with reverse last shoes? I am ordering them from a orthopedic shoe maker locally, but has anyone found any online for order to the US?

Personally, I'm ashamed to admit that I am ashamed and sad. How can I explain to my parents that she is delayed but going to be okay hopefully? People always ask can she talk or walk and I say no and the looks of pity they give us are heartbreaking. My dad actually asked me one day, "Well what did YOU do to her? She should be talking by now." And for some reason I feel guilty that she is behind, even though I know that this is irrational, I cannot help feeling it.

Anyway just looking for some support. Thank you all in advance for your wisdom.

[QueenOfTheMeadow]

  Welcome to MDC and the special needs parenting forum.  This is truly one of the most supportive forums I've ever been on.  Please do not feel badly about the way you are feeling.  You don't need that extra pressure.  I think many of us with kids with special needs have been at the point during the journey.  You are not alone in that.  Mommy guilt is the gift that keeps on giving! 

I know when a solid diagnosis comes in, it's like a blow to the stomach.  You lose focus and start focusing on only the problems.  Just remember, your little girl is exactly the same little girl she was before you were given numbers and results.  The only thing that has truly changed is that now you have the information to help her!  That's a good thing to know and the first step on this journey.

 Dealing with the expectations of families can be really tough.  Can you print out any information regarding your child's special needs?  Sometimes being able to hand someone a paper and let them read it and think about it can help with that conversation.  I know it hurts right now, but you will develop a thicker skin as time goes on.  I want you to take a gander at this thread. 

I hope someone who has experience dealing with metatarsus abductus will respond as well. 

[Veronica Valdez]

Hello! I'm no professionally but it seems to me your baby is still young. My daughter didn't walk until a year and 2 1/2 months.. Every child learns differently.. My son is 3 and 4 months and doesn't speak. At the age of 12 months he wasnt doing the things he should of been doing for his age. Not even waiving bye or responding to his name. Im sure your daughter will be fine. Give it a few months. Hope all is well!!

[Linda on the move]

  A lot of us go through a series of emotions when discovering that our child has delays or special needs. There isn't a right or wrong way to feel or to process this. Dealing with the reactions of others, especially grandparents, can be difficult.

I'm not familiar with the scoring used in the screening test that were done for your DD, but I gently suggest re-framing how you think about the results. There is no "pass" and "fail." There is just where your child is right now, and the question of whether some extra help would benefit her. There is a measure of what is typical for children her age, but it's pretty meaningless. Every child is different.

At 13 months my DD was not yet walking or speaking. She's nearly 16 now and she volunteers at the library in the summer, takes college prep classes at school, and is learning to drive. A lot of things are more difficult for her than they are for other people, but she did not stay stuck where she was when she was 13 months old, and neither will your DD. We've done lots of different kids of therapies and schooling options, but it's all worked out.

It's OK to grieve that your child is currently struggling. But don't loose hope. She is on a path and she is learning and growing every day. As far as people looking at you with pity, it may be that you are projecting your fear, concern and guilt and they pick up on that. Responding with "not yet!" with a big smile might get you a different response.

Peace
 

[EarthRootsStarSoul]

My son was delayed with pointing (huge red flag for autism), but he just started Kindergarten and is perfectly fine.  I'm sure your pediatrician already said this, but get her hearing tested right away.  Even if she passed the newborn hearing screen, do it again.  A partial hearing loss might not be something you'd notice day-to-day, but could slow down her learning to speak. 

Your parents are not reacting the way they are supposed to, don't take it personally.  Try to find other mom friends at playgroups and look for support there.  If people are giving you a hard time, cop a sassy but playful attitude and tell them, "She will walk when she damn well pleases!"  LOL 

[fizgig]

Oh my goodness I had to reply to this!  I'm sorry I don't have any experience with metatarsus abductus but I have lots of experience with EI, evaluations, and that feeling you have when your child is not reaching their milestones.  There are few worse feelings than someone telling you how far behind you child is and it is very difficult to not sometimes feel sad or very, very worried, and yes, guilty.  These are 100% normal emotions and you should give yourself permission to feel them. 

My first reaction is that your little one is SOOOOO young.  I'm not saying that you shouldn't pursue evaluations, therapy, etc - but my goodness there is such a huge range of development at that age I am sort of surprised that EI and your ped are pursuing things so soon.  I guess at 13 months I'm not even sure what self help skills they are looking for beyond self feeding a bit?  EI can be great but please also take everything they say with a grain of salt.  Unless there are medical issues, no one can accurately diagnose a child at 13 months. 

I'm certainly not able to say things will be fine, but I do think you are at such an early stage with your DS that you just can't really know how things will evolve over the next few weeks, months, and years :) 

Finally it sounds to me like you need to ignore your father and anyone else pressuring you and your DD.  There is nothing you have done and anyone implying this is your fault does not have you or your child's best interests in mind and should be promptly dismissed.  You can't make a child walk or talk and the hardest part of this journey for me has been celebrating DS's achievements and victories when they happen and stop thinking about when they should have happened.

[Emmeline II]

I'm not saying that you shouldn't pursue evaluations, therapy, etc - but my goodness there is such a huge range of development at that age I am sort of surprised that EI and your ped are pursuing things so soon.  I guess at 13 months I'm not even sure what self help skills they are looking for beyond self feeding a bit?

I've seen posts about referrals to EI virtually from birth, so 13mo doesn't surprise me; from what I read it seems like metatarsus abductus will require physical therapy.

Though I agree about not regarding EI as infallible; if you aren't satisfied with "diagnoses" or services you don't have to stick with it just because EI (or anyone else) says so.  I also think it would be a good idea to have her hearing reevaluated.

As for your dad...I don't know what he is normally like but sometimes concern just comes out as really stupid statements; dads tend to be more blunt--it may help to point this out to him, "wow dad; do you realize you just blamed me for dd's delays/condition!?" As a pp said, sometimes education helps; here is a simple article from pub med on metatarsus abductus. If your mom is more understanding you could primarily convey information to her and have her pass it on to your dad. It can also be helpful to refer to authorities, "the doctor said..."

As for strangers, just do what is comfortable for you. Sometimes a "just the facts" approach works well; for the "is she walking questions" you could say "she has metatarsus abductus and is getting reverse last shoes to correct it." For "is she talking yet" you could say "she has a speech delay." If they give you "puss in boots" eyes just shrug and look away.

Diagnoses, even expected ones, can take some time to work through emotionally; and when your child is so young it can feel worse because you can't see what things will be like for them in the future. When my ds was 4 and 5 things were so bad I couldn't imagine how well he'd be doing today at 8.5yo (ADHD/Asperger's).